I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: The Wife on January 28, 2008, 09:07:07 AM
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One of my ways of dealing with what's been dealt, is by writing. I'd like to take this space and post some of my writings. Here is a little piece written on May 7/2007...I share this for others who are just receiving all of the boxes that come when home dialysis becomes a part of your space:
“How many boxes are there?” I asked the deliveryman as he brought boxes filled with dialysis fluid into our one-bedroom apartment.
“Fifty-two.”
“Fifty two?! Our walk-in storage closet is already full of boxes, a few are lined up against one wall in the dining room, and we have to find space for another 52? Why do they keep bringing more?” I asked even though I already knew the answer.
As my partner makes the transition from the way dialysis is administered, we have to have the supplies for both in our apartment. Home dialysis isn’t turning out to be as great as we thought it would be. Sure, some of the symptoms are better but not everything. “It’s a constant adjustment,” I said. “I don’t know why I bothered trying to make this place nice. Let me remove some of the photos from the wall.”
“You don’t have to take them all off. I can’t stack all the way up. When they have confidence that the night-cycler is working, I’ll take the unused boxes of twin bags away. I know, it’s quite overwhelming.”
It was overwhelming. So much that I had to go into the bedroom and have a little cry. I wiped my tears and stepped back into the living room.
“I know it’s stupid to react like this but you know what it is?” I speak to the deliveryman and my partner. “It’s another physical reminder of what’s going on. The only thing I have control of anymore is how I keep our home.” I took a breath. “I have to look at my reactions and see what they’re really telling me. See what I need to release. It’s another reminder to let go.”
Sometimes, something comes into our lives and messes up our space. It may be items we’d rather not have, something someone said to us, emotions we’d rather not feel, or an event we’d rather not have staring us in the face. As I continue to downsize and let go of personal items to make room for medical supplies, I realize something else. As I release my need to have control over the state of our apartment, a space opens and compassion toward myself takes place.
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May 19/2007
While observing all of the boxes stacked in our dining room this morning, a thought crossed my mind. What if they were filled with chocolate kisses? Oh my, that would be a lot, so much, that one would have to give them away. At first, I thought how great it would be to walk outside and give one chocolate kiss to everyone that crossed my path. But let’s get honest here. When one kiss melts in your mouth, you have to have a least a couple more.
My thoughts expanded and I imagined handing out a handful of kisses to each person I met. I imagined the sweetness and the smile it would bring to their lips. I imagined the joy. Of course not everyone can have, or even likes chocolate, but since this is my imagination, everyone gets kissed by sweetness.
What is in these kisses that bring a song to our heart? The best way to answer that question is to remember the times I’ve been given a chocolate kiss. When chocolate melts in my mouth, I feel blessed to be alive and to have the opportunity of tasting something sweet.
The boxes in the dining room represent life, are life giving, and life expanding. We are life. As I observe the boxes stacked on top of each other, extending out into the room, I imagine they’re filled with sweetness and I'm passing it on.
We’ve all been given a box called our body. We fill it, empty it, and experience it. We experience the contents of others who come into our lives. We exchange the contents of our box with the contents of others. We taste the many flavours of life.
Let us all remember to taste life fully and completely. Let its sweetness touch our lips and melt into our hearts. Let us taste gratitude and joy, and give thanks for the box we have to open. Let us pass the contents of sweetness on.
Kiss Kiss
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Wow! I like the way you express yourself.
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Thank you for sharing those wonderful thoughts with all of us. We can live several weeks without food, days without water,and only minutes without oxygen, but without hope - forget it.
Mimi
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I wish I could look at MY boxes the way you do. :-\
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I enjoyed reading what you wrote. :)
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I am a technical writer with a dream to someday write a book. Trouble is I have too many ideas and need focus. I truly enjoyed what you wrote. You have a nice way of showing your thoughts, observations, and using verbal dialog. Seriously, you could turn your notes into a book. (or maybe even a movie) :popcorn;
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Wow. Thanks for the replies.
Odat, I am writing a book. It's basically finished...just need to edit.
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I had a good friend who used to work here. He has written two books since he left. I have an autographed copy of the first book of which I assisted with the editing process. The book is called 'When Vapors Vanish' by Robert Steven Calvert. You can get a copy online at amazon.com. Very interesting and I believe, biblically correct. The second book I haven't had time to read yet - 'The Son of Medusa.'
Not that I'm asking to edit your book... just saying that's the closest I've been to writing a book. lol
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You know Odat, I was just in the kitchen preparing breakfast when a thought crossed my mind. Actually a couple of thoughts. One being, I need help editing. The second...can you guess?
This book is a true story that is told in an imaginative way. I write backwards, upside down, yet somehow, end up standing in the direction I'm supposed to. Or so I think. Sometimes, I just can't read it anymore and you just never know Odat. I just might be saying, "Please, can you take a read and help me with the editing?"
I won't be on the board again for probably a couple of days but would like to continue this conversation. Please feel free to pm me.
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I wish I could look at MY boxes the way you do. :-\
Maybe it's easier for me to turn the boxes into something else because they're not mine. They're in my space and I have my own emotions to deal with in regards to my partner being on dialysis, but I can escape from it while he or anyone who is 'doing' it, can't.
I appreciate the feedback on what I've written. It helps propel me forward with a "yes, you need to finish what you started." After LL started peritoneal dialyisis, I stopped wriiting my book. Mostly, it was finished and I needed to step back for awhile. After 'awhile' dragged on for longer than I wished, I couldn't seem to get back to it. And then I wondered if what I had written was just a waste of time. Or something to keep me from crawling into a hole myself.
And then there was the crashing computer or lack of money to buy the ink for the printer. It seemed that everytime I tried to move forward, something stopped me or left me questioning why I even bothered trying to do anything at all. Whenever I couldn't move forward, I sat. I observed, wrote a little without even thinking of the book, cocked my head to gain a different perspective of the boxes that overtake our space, and imagined.
And thanks to those who said something nice about my way of writing, I'm feeling inspired to move forward again. Feeling the words flow from wherever they come from as they find themselves in a space on this forum. Or into the new chapter I wrote this morning.
Perhaps, my imagination is what keeps me sane - especially now that I am a dialyisis wife. It's strange but admitting that I am a dialysis wife makes me feel like I've stepped into one of those twelve-step programs I've seen in movies.
I imagine this movie and in this scene, I see a box. Inside, it's filled with chocolate hugs. And I'm giving one to all of you.
Thank you for this space.
And thank you Epoman for creating this site. May you rest in peace.
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:cuddle; Feeling your hug and sending one back. So glad you are part of the family. I, also, enjoy your writings :thumbup; Keep going forward.
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Thanks Paris.
Well, I'm back to working on the book and it feels good. Don't know how long it'll take to finish but that's okay. The main thing is that I'm in process again. It's interesting how when we open up to others, something opens up inside ourselves. Thanks everyone for inspiring me and welcoming me into this family.
The comment about the twelve-step program comment I made came back to me this morning. I realized how much I needed to be in a place where I could talk about dialysis or my feelings as a caregiver/spouse, freely. Don't get me wrong. There have been a few wonderful people whom I've met on another forum that have been open to listening, learning, and simply being there for the days I need someone to talk to. The other forum just doesn't work for me any longer but I have collected a few email addresses.
I like writing on a forum. Helps me get the flow moving. You know, talking to someone beside myself? Email is a great way to converse with others but not everyone writes as much as I like or their schedules just don't allow them to email as much as they may like. I could chat with others a lot but sometimes, I have to do housework, my own work, rest, cook, and those things we as caregivers and women do. Of course there are the times when I go into the closet, pull everything out, try on what I see, and think. Or have conversations with myself.
I have to admit, I do like to talk to myself. Love to answer too. I usually get along with myself but occassionaly I have to disagree. I find it makes for interesting conversation. Don't you think? When my partner was bed-ridden for several months, I had to do something to keep myself company. He slept a lot. I think this period of time started a habit that I've come to enjoy quite a bit. So much, that one time I caught myself talking out loud to myself in a grocery store. When I discovered what I was doing, I had to laugh. And no, I didn't laugh silently.
I even talk to myself while I'm walking down the street and when I do, I sometimes notice people looking at me like I'm a bit strange. You know, if they'd just come up to me, I'd happily have a conversation with them. But you know how some people can be. They like to judge without really knowing a person.
Just recently, my partner caught me whispering to myself. Can you believe this? I've had so many conversations with myself that now I'm telling myself secrets. I'd love to share but you know, a secret is a secret. And I, for one, will sew my mouth shut if someone asks me not to tell. As I write these words, I can't help but wonder what secret I told myself. Ummm, too bad I can't ask. My mouth is sewn together. Maybe I'll write a note later and see if I get a response.
Anyway, I just wanted to pop in and say hello.
May joy reach into your hearts and bring laughter to your souls.
Hugs...
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You must be reading my mind and putting my thoughts on this forum.
I so love your writing and the fact that you are expressing my actions is unusual but maybe there are other caregivers that are experiencing the same thing. Since we are all in the same boat.
It's the talking to myself thing that is especially weird but maybe not if others in this position are also holding conversations and telling secrets to themselves.
Do you find your self singing out loud to the muzak when shopping?
Please keep on posting and I'd definitely buy your book.
Joannie
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I'm trying to remember if there's muzak in any of the shops here. I don't shop much. Well, except for groceries, and at the thrift store. There definitely isn't music there.
In regards to the talking to ourselves thing - perhaps what we're really doing is talking to our hearts. Who else truly knows what our deepest feelings are, especially when some of them can't be fully expressed by words?
When we watch our loved ones go through suffering, we want to talk to them about how we really feel. But then we stop ourselves. How can we add what we feel to the intensity of what they're going through? Somehow, it just doesn't seem right.
Unless we lose it. You know, those moments when you're so sick and tired of him being sick and tired. So fed up of him not being able to do anything, go anywhere, or resemble the man he once was. We end up saying something we wish we hadn't and then we have to apologize, explain that sometimes we also get frustrated. That this just doesn't affect them, know what I mean? We want to say more but we don't. That's when we get into the deeper conversations with ourselves, open closets, pull out our clothing, stare into the corners of darkness.
There have been times when I have asked myself why I put up with this. Why I stay when others have left. And then there are the moments I've asked what I did to deserve this, to deserve a partner that can't be a partner anymore. At least not in the way I used to describe partnership. When I stopped asking, I started to listen. I listened to the sorrow and followed the tears that led me into my own loneliness, my fears, and all I had lost. And then I found my very own heart, and the reason why I stay.
Whether we sing to muzak in a shopping mall, or to the music that others cannot hear, the song that is played is felt in the rhythm of our beating hearts.
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You have a way with words Lady The Wife!
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I think your words are helping all of us TW. Some days I feel so bad for my husband. He has to deal with my moods, pain, disruptive schedule, financial situation --he didn't ask for any of this. He always says that if it were him, he would be whining and crying all the time and that I never complain. Not true--just try not to do it around him too much! He thinks I am brave! I deal silently with everything and that isn't the best thing to do. Keep sharing your words. They are beautiful and we all need beauty in our lives.
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I wish the informational videos gave a more realistic view of living with kidney disease. Felt that way watching them with mom. Sure, they don't want to scare people away from a life-saving treatment, but it's not fair to depict it in such a light. Then when you start down the road, you are scared because you run into so many issues you never thought about. I feel so responsible to inform mom of everything, yet scared because I don't want her to change her mind and not do dialysis. Yes, it is her decision and making sure she is informed in a balanced way is so hard. Honesty here on the boards is so much appreciated. Having a window into your world helps others immensely. thank you all
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The Wife, Thank you so much for your words. First, the way you picture the boxes as boxes of chocolate kisses is wonderful...I had a mental picture of walking down the street with a purse full of kisses to hand out to everyone. What a great picture! Second, for voicing what you, as a caregiver, think and feel. I got put back on dialysis two days after our honeymoon, and my husband has never once complained about any of it (except not being able to park in the garage because of all the dialysis supplies). Because he's been so stoic about it, I sometimes forget that this affects him, too. Thank you for reminding me, and helping me to see what he won't tell me. Please keep posting, and I would absolutely buy your book!!
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"If you had known what this was going to be like, would you have chosen dialysis?" I asked my partner.
"Yes. I thought it was going to be worse. Thought I'd have to be wheeled around and spoon-fed."
I'm glad I asked.
My experiences are not the same as someone on dialysis but I've had more than my share of heartache and hardship. I have found that even in the harshest of times, there is always a gift.
These gifts live in the tulips that open in spring or in conversations where strangers become friends. They come when love from another outweighs the pain, and in the smiling face of a child learning to walk. We open these gifts when robins sing us into a new day and taste it in the fruit we bring to our lips. We feel it when a warm summer breeze drifts in through an opened window or touch it when our hands reach out to caress.
Our lives may not be exactly what we wish but if we take a moment to reflect, we can always find a gift.
In this moment, I am feeling the gift of your hearts.
Thank you!
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You know, I didn't come here to promote my book. If it weren't for ODAT's comments, I wouldn't have said anything. BUT I have, and with your encouragement, I'm starting to see that I need to finish it, that it might be worth publishing afterall.
That's what I love about this forum. People pull together and lift each other out of darkness - out of the painful moments. I started writing my book after three major losses and just when we thought things were going to pick up, my partner became ill. If anyone is having a hard time dealing with what they've been handed, I suggest starting a journal.
Mind you, coming here, is just as good. :)
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Okay, so this is my third post in a row. Does that mean I'm now talking to myself? :rofl; I really need to get out and talk to other women and I had the opportunity to meet with a friend this afternoon but it's cold. And my sciatica is acting up.
You bring up silence Paris, and you KT bring up how your husband is stoic in what you're going through. I'm often silent or appear other than what I feel. When my partner nearly died from the gut bleed caused from one of the drugs they were giving him for his hep c, his friend told me I was a rock. Inside, I was falling apart.
We all suffer in silence during certain times but when we come together and share what we are really feeling, the gap we place ourselves in closes, and we walk this journey together, instead of alone.
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They tell me I am a rock. Hah! I am not a rock. Inside I am a screaming meame with all the crazies to boot. I just sit there and take it. What choice do we have? Running and screaming in circles will not change the facts that are presented to you.
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You're right Kitkatz, we take what we're given. Sometimes I'd like to run around and scream. Could be fun. Instead, and when the moment is right, I observe my emotions.
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When crisis strikes, especially when it is someone else, hysterics is not needed nor appreciated. They need immediate help/support, whatever
it is.
I've always been so irritated when someone needs them. We know who I'm talking about. Those who want the attention for themselves
instead of the person in need, or the person who over exaggerates their symptoms to appear more ill/in need of help than is really needed.
Those of us who fall apart in genuine crises, I can understand. Those I sympathize with! That being said, I'd rather have the hysterics
later on, in the privacy of my room/car, away from other people. That person needs me, I need to be there for them, to give them
my support.
It's hard sometimes though. I'll say that. It's very hard to be the strong person when you're physically not as strong as you used to be.
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When crisis strikes for the one who is ill, we do find our strength. I think most caregivers do, but afterward, we need to deal with our own emotions in order to support the one who is sick at home or in a hospital bed. I think that's why it's so important for caregivers/spouses to take time for themselves.
When my mom was dying, my dad refused to leave the hospital. We tried to get him to do something other than sitting with her for twelve hours every day but then again, it was his wife of nearly fifty years, not mine. There wasn't much I could do for my mom but I could help my dad by spending time in the hospital alongside him. Whenever I couldn't stand it any longer, I'd go for a walk, have a cry, come back in, and find myself in a better position to be there for the both of them.
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So many times I wished I could trade places with Jenna and take on her illness. I am not that I am all that tough, it's just that I wish so much for her life, that I would gladly swap my health for hers if it would give her a break from feeling bad. Caring for her, helping her, encouraging her, it's the least I can do given what she has to face. I don't know where this path will lead us, but I hope to make it a good trip, regardless of the obstacles thrown in front of us.
I think journaling is a good thing. I write on Jenna's caringbridge site and it helps. When I look back and read what I wrote at the beginning, I realize how far she has come, and that hope springs eternal!
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I can't imagine what it would be like to have a daughter with kidney disease Okarol. When my daughter broke her arm or had the flu, I was like you, wishing it were me instead of her. To see our children in pain is worse than anything. When I used to get into that place of feeling sorry for the life that has become my partners and myself, I think of the kids that go through this. Bless their hearts. And their mother's too! Can I read Jenna's site?
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Thanks Wife.
Yes - her story ---> http://www.caringbridge.org/visit/jennafranks
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I know in many ways my ESRD is harder on my partner than on myself. Still, I get solid support all the time, and whenever something new happens, my partner will make sure I have the space to have my own reactions and not have to become the caregiver myself in a time of crisis. So when there are the occasional melt downs, I'm very happy to be there -- my partner is my rock, 23/7, so whatever support is needed in return is my pleasure to give.
Thank you for sharing all you have, Wife -- your writing is wonderful!
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My husband and I were talking about this just this morning. His mother had many physical and psychological problems, and started showing most of them about the time he was 10 years old, so as he pointed out, he had an early introduction to stress. This has served him well over the years, and he was drawn to his career because of it - he's in law enforcement. He does not get stressed out and worried about things that are out of his control. He simply looks at the situation, assesses what needs to be done, and goes in and does it. He said the hardest thing for him over the last year and a half, was essentially being a single parent (and he's my son, by a previous marriage). I told him that things were going to be better from now on, and his reaction was, "When you're ready." He truly is my rock, and I thank God for him everyday.
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That's one thing I miss. I live alone, and don't have that daily rock to lean on. My fiancee and I talk every day, of course, and when we can,
(or when I am in distress), we see each other. But the daily grind, the every day chores, that's what's the hardest for me. I can't even take
my trash out to the back yard, I have to leave it on the porch for my son to come over from Indy once a week or so. It's just too much for
me to handle. Just doing the cycler and the cats is sometimes too much. But that has to be done! That and getting ready for work. Every thing
else goes by the wayside, including, a lot of times, making my own meals. A lot of times I just don't eat. I'm too tired. Or I'm hooked up.
Value your caregivers. It may be your spouse/loved one, but they really do make a difference.
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I have my rock here at home. It is my husband. No matter how much the seas of life pound on me, I know when I come home there he will be to hold onto me.
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... No matter how much the seas of life pound on me, I know when I come home there he will be to hold onto me.
kitkatz, what a beautiful thing to say. It gave me chills. I just pictured abandoning myself to the sea waves standing strong and unafraid. Fortunately, I've actually been in the sea. Some have not. It is an awesome feeling. It just goes to show how strong you are to withstand those waves. :cuddle;
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I was going to write something to express how much all of you touch my heart but the words disappeared. Instead, I sit here and wonder what it is I can do to make my partner's life easier. What I can do to take away the pain and suffering he goes through on a daily basis. I think of all who have to endure this - the patients, the caregivers, the daughters and sons. Through kidney failure, something beautiful appears. It weaves from one heart to another, lifting, holding, bringing comfort in times of need. As I write these words, a song of many takes place outside my window. We are like the song on the tree.
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I was quite concerned the past few days. We weren't sure if my partner caught the flu or if it was peritonitis. If things didn't improve by this morning, he was to do an exchange using the twin bags. The nurse wanted this taken to the hospital for testing...but, he had a better night. The flu is moving out of his system and he's eating again.
A breath of gratitude is released...
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No matter how much the seas of life pound on me, I know when I come home there he will be to hold onto me.
Kitkatz, this sounds like a beautiful line in a song.
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Good to hear he's doing better!
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Glad to hear he's better!!
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Me too! The other night he was having a hard time breathing, the chills, and other symptoms. I almost called an ambulance but he said he didn't need me to....so I took his word on it. Thankfully, the nurse confirmed that there is a flu going around. This of course eased my mind but still, we needed to be sure it was the flu. Well, good things sometimes happen and in this case, the flu was the good.
There are questions I still want answered. Like, what is the pain in his body about, why does he never have energy, those sorts of things. When I told the nurse about this during another earlier conversation, she said, "Oh, he should have energy." I then thought of the posts I read here. I've brought concerns to their attention a few times and it seems they forget as soon as they close his book, or are just to busy to follow through. One time after I took my concerns to them, they checked his pth levels. They were high. The doc told him to cut back on his tums and take a new prescription. BUT, he experienced some of the side effects of the prescription (I forget what it was.) And now, nothing has been said. No follow up whatsoever and he's still on one tum a meal instead of two. Is anyone even concerned about his pth levels?
I'd better stop myself before I go off on a rant and need to borrow kitkatz's big stick.
By the way, I pulled up your website Okaral. Big hugs to all of you!
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I know I'm releasing the stress of the past couple of days. And so, I sit here and return to my breath.
Slow...
Acknowledge that it's okay to feel all of my feelings, okay to be afraid sometimes.
Return to the song of the morning...
Surrender...
Trust...
Gratitude...
I am so grateful for this space and for all of you.
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That's the scary thing, TW, you gotta figure out, is it the renal problem or is it really just a flu? Which is not always 'just' a flu by the way..that can lead to complications too, which I am sure you are well aware of!
It's a scary thing for both patient and families. Hang in there, you're doing a wonderful job with him!!!
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Thanks MyssAnne. I just finished telling someone that everything from the simplest cold or flu has to be taken seriously with someone on dialysis. Sometimes my head is turning in too many directions from all the stuff I'm trying to figure out. Good Lord, what a balancing act this is and it just never seems to quit. One thing settles, then something else pops us. That takes a back seat and another new thing appears. Does it ever end?
There is one good thing that took place. I called the nurse again. They're going to get sick of me but I'm determined to help give my partner a better quality of life. I reminded them that his PTH levels are still high and what are they going to do about it? She said they'll look at it at the end of the month when he goes in for his clinic day. Well, that's still a couple of weeks away. Perhaps, I'll spend the time writing up something...like a list with all of my concerns.
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This is the first time I've read through this thread. I really enjoyed the writing wife. I am a wife too. My hubby has been on diaysis for almost 11 years now. First pd then in center hemo now home hemo nocturnal. He is one of the lucky ones that have no other health problems and has loads of energy. We do everything that we always did except for hooking up to a dialysis machine 5 nights a week. There are times though when he gets fit up with everything and a little depressed and I have to be the strong one then. Our dialysis nurse is really good. We do monthly blood work. I call the next day and get all the results to write in our files. If somethings not quite right we do things to try to correct it. I will definitely buy a copy of your book when you publish it!!!
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The lack of energy can be just because of the ESRD. Remember, dialysis only replaces 10-15% of normal kidney function, and so not all the toxins are being removed. No dialysis patient will have as much energy as a healthy person. As for PTH levels, my clinic would check them on every patient every 3 months, and more often (I believe), if it was above a certain level. Make sure they're monitoring it on a regular basis.
As for what you can do for your partner....keep being there for him. Know that you won't be able to take away his pain or suffering, but by accepting that he's not able to do everything he used to be able to do, and allowing him to do what he feels like doing, you can help a lot. Also, take time for yourself. Find some girlfriends to go out with once in awhile, go shopping, go to a bookstore or library, go get your hair done. Find something that YOU enjoy doing, and do it without feeling bad about it. You can't take care of him if you don't first take care of yourself.
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I knew that dialysis doesn't do the full job healthy kidneys do but no one told me it was only 10 - 15%. No wonder he's so tired. Why do some patients, such as Del's husband have "loads of" energy?
Does this percentage you've given mean that the machine is working like someone with only fifteen percent kidney function?
When I spoke to the nurse about his lack of energy, she talked about medication for depression. If someone is depressed and needs help with this, okay, but what is a drug for depression going to do if he still doesn't have the physical energy and/or is in pain?
MyssAnne, thank you for bringing up how hard it is on you to take out the garbage. It's the same with my partner. This is a perfect example of the things I'm trying to understand. Is he not doing something because of lack of energy or has he lost motivation? I can see how tired he is and I also know he's feeling lost with his purpose in life. He posted this. I'm thinking, if you start with small things (like taking out the garbage), maybe you'll get stronger and then you'll be able to do some of the things you miss doing. (Like going for walks with your wife:) Is my thinking wrong?
Now I'm wondering what complications colds or flu's have - the things I haven't been told about.
Don't worry about me. I definitely take care of myself. I've already learned the importance of filling my own cup before I can pass it onto another.
I really appreciate the knowledge you are passing along. :grouphug;
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TW, that's a good way to start, start small, small accomplishments DO mean a lot! This week, for instance, I cooked my meals.
It had been a LONG time since I had really cooked a meal, fresh ingredients, and all. I not only had the motivation, I had the energy.
That's the problem, having both, the energy AND the motivation. One nice thing about cooking when you feel good, you can cook ahead
so you have several meals (or entrees) for the nights you are tired. When I am tired, really tired, my limbs are heavy. I literally drag myself
out of bed, and those are the days I do the bare minimum.
I'm sure others will chime in with their experiences, so I'll stop here!
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I'm glad to hear you were able to cook your meals MyssAnne. Sometimes I wonder how my partner would manage if he were on his own. How anyone manages. I'm not planning on leaving him and that is one thing I had to tell him. He was afraid I would and I understand. Sometimes I wondered if I had what what it took to do this, especially if 'this' meant many years.
One great thing that is helping the both of us comes through the form of an x-box. My partner's daughter's friend gave him her old one when she received a new one for Christmas. This gives him something to do and I can already see his spirits pick up. He said it keeps his mind active. I see it as something that takes his mind away from how crappy he feels. For me, it frees up the computer so that I can write. A perfect solution for the two of us. This has been a positive start to a new year.
When my partner has a bit of energy, he'll cook the things he eats and I don't, and if he's having a really good day, he'll wash the dishes. For the first year, I was terrified he wouldn't make it. Now, because of those who come here, I see that he can live for many years. I also see that some things will never return to how they were, so now, I'm looking at how to create the best life possible considering the circumstances. In regards to having the kind of energy that leaves one barely able to drag themselves out of bed, I can relate. When I think back to the times I've had a terrible flu, I think I understand. I guess this is kind of like the serenity prayer. Know what can be changed, what can't, and have the wisdom to see the difference.
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When I spoke to the nurse about his lack of energy, she talked about medication for depression.
I'm a bit surprised she jumped right to depression without talking about lack of energy as a common physical symptom first.
Here are some IHD threads on fatigue:
http://ihatedialysis.com/forum/index.php?topic=6422.0
http://ihatedialysis.com/forum/index.php?topic=466.0
http://ihatedialysis.com/forum/index.php?topic=4210.0
http://ihatedialysis.com/forum/index.php?topic=5600.0
And one on depression
http://ihatedialysis.com/forum/index.php?topic=2572.0
I don't know why some people have more energy than others. My neph says it's just one of the many things that really varies from person to person with this disease. Good luck to you both figuring it all out.
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My understanding is yes, being on dialysis is like having only 15% of a functioning kidney. I could be wrong, since it was never really explained to me, but I have been quoted that 10-15% by people on this board, my dialysis nurses, and my neph.
Like one other person said, I think the reason some people have "loads of energy" and others have almost none just has to do with the individual. It could be partially emotional, but it could also have to do with how well their body deals with those extra toxins.
As for starting with small things and building up, I say yes and no. Yes, ask him to do small things around the house, but don't expect it to necessarily lead to more. The energy can come and go, and cannot always be built up. In the 15 months I was on dialysis, I had about three or four weekends when I really felt physically and emotionally well enough to get a lot accomplished. Those weekends were GREAT! But then there would have been many more weekends when I wouldn't get out of bed until noon, wouldn't get out of my pajamas until 3:00 or 4:00, and it would be a huge accomplishment to make a very simple meal for dinner.
Medication for depression will not help with physical pain - though there's one being marketed now that claims to - but could help some with the energy. Unfortunately, there's no way to know for sure if it's truly depression or simply a short-term motivation problem. Though depression is extremely common in people with chronic illness. I was lucky, I saw my neph once a month, and after about 9 months on dialysis, he looked at me and said, "How's the depression?" My husband was there that visit, and between the three of us - me reluctantly - we agreed I needed a prescription for it. It helped some, but it certainly wasn't a magic bullet.
Sorry this post seems a bit down, but I wanted to try and answer your questions as honestly as possible. I hope there's some useful information, anyway.
Good for you for taking care of yourself, for educating yourself and sticking with your partner through all this. He's lucky to have you!
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You're absolutely right Katie, especially when LL is already suffering from so many issues (physical) already. He just most likely is NOT gonna
gain energy. You don't. You grab it when you have it, and go with it. I have 'energy' because I am a naturally hyperactive person, and the
hyperactivity comes out as 'energy.'
So...encourage him, but don't be surprised, disappointed if it doesn't go far. It may not. What you really want is LL to be motivated, interested,
aware of what is going on. As long as he has that, he's on the right path, so that when he gets a burst of energy, he wants to use it!
Hang in there TW. :cuddle;
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The lack of energy can be just because of the ESRD. Remember, dialysis only replaces 10-15% of normal kidney function, and so not all the toxins are being removed. No dialysis patient will have as much energy as a healthy person. As for PTH levels, my clinic would check them on every patient every 3 months, and more often (I believe), if it was above a certain level. Make sure they're monitoring it on a regular basis.
I too was not aware of the percentage of kidney function that is left while on dialysis. Actually I am shocked but this explains a great deal as to why my husband's energy level is so low.
Although , he is not getting around at all right now and are hoping for home PT next week to help him get back on his feet again.
He had a bout of peritonitis last week but it seems like he is clear now.
I don't know if this is the right forum but since there was talk of TW's partner receiving an X-box for Christmas and how this has helped his spirits was wondering if anyone has any suggestions for my husband who is blind?
He listens to TV all day ( when he is awake) and usually we will listen to music on the weekends, just for a break from TV. We've tried the books on tape from the blind but he can't get into them.
Thanks
Joannie
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My experiences are not the same as someone on dialysis but I've had more than my share of heartache and hardship. I have found that even in the harshest of times, there is always a gift.
"when God closes a door, he opens a window"
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Regular books on tape? There are downloadable media available from most libraries on their website, does he have an IPOD?
I THINK there are some games he could do, I've heard of blind people playing computer games. What does he like to do?
Can he do it still?
I hope someone else has some better suggestions for you.
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MyssAnne, we have tried regular books on tape and also the ones that are provided by the Library for the Blind.
I have an Ipod and will look into the downloadable info.
Some kind of computer game would be great but he can't use a regular computer because he has no vision at all, but I wonder if they make some kind of hand held games where he can feel for the buttons the way he does with the TV remote? I'll try to check into that. Thank for the idea.
Joannie
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This is such an excellent thread! My neph also told me that dialysis is equal to about 15% function, which is the number I am at now. MyssAnne did a great job of explaining the fatigue---heavy limbs, walking in a fog, feeling flu-like all the time. It has taken me awhile to realize that it is ok to do what I can, when I can and to stop and do nothing when I need to. My house isn't as clean as it use to be, home-cooked meals happen less frequently, laundry may pile up some days. I have learned that sleep pants are a gift from God!! I allow myself to get comfortable and rest when in the past, I would have pushed myself to the brink. Dr. finally convinced me to try an anti-depressent and I think it has helped me to be less critical of myself and to help me just appreciate a simpler life. It is just the everyday things that changes so much. Use to be, I could clean, grocery shop, cook and raise 4 kids without blinking. Now, I plan carefully how to get through the grocery store in the least amount of time and then figure out how many meals can be cooked in the crock pot! To all of you who live with ESRD partners, we know it is hard on you, too. Watching someone you love deal with such a disease and having them change so much must be extremely difficult. I feel very quilty some days that our retirement won't be what my husband expected, our finances get pushed to the limit because of me and I know he misses doing so many things we have always done. So, thanks for hanging in there with us. I know there are many spouses who couldn't handle it and left.
I know this is thread is for spouses and caregivers, but it is giving the ones with the disease a view from the opposite side. Thank you for sharing.
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You're right Paris, this is an excellent thread! I, for one, am so grateful for those of you who are sharing what it's like on dialysis. You have no idea how helpful you are. Learning that dialysis is like having 15% functioning kidneys sheds a lot of light. I don't want to push or nag, but do want to support and encourage, and knowing where to start from is a great starting point. Why don't doctors tell us more details? Unless we ask specifics, we don't get answers and I didn't even think to ask about the percentage.
MyssAnne, I don't know how you manage. If I were closer, I'd be bringing you a few made up meals to pop in the oven.
Joannie - A silly thought crossed my mind. Well, maybe it's not silly but here goes - the photo of the two of you is in a sailboat. Is that correct? Anyway, my mind started thinking - rope, hands, ummm....how about macrame? You could probably check on the net to get ideas and who knows, this might be something your husband can get into and make for gifts. I asked LL if he wanted me to teach him how to knit but got a big no for that idea. :rofl;
Psim - I agree. Why do they always jump to the anti-depression conversation? If he's in pain or doesn't have energy, is this type of medication going to change these problems? I can almost hear the conversation. "Thanks Doc, I'm so happy with my low energy and I tell you, the joy I feel when my body hurts all over is just beautiful." Okay, so I'm being a little bit sarcastic but you get my point. However, Paris makes a really good point about not being so critical of herself.
KT - your post wasn't down at all. It had the kind of information I need to know about.
I seriously think they need to take his PTH levels into consideration. They say his other readings that go with this (calcium and ?) are good, and that's why they're not concerned. but I am. It keeps getting higher. Somewhere on the web is a site that talks about how PTH is a problem even if the other factors or whatever they're called, are okay. It said to print it off and take it to your doctor because doctors don't know everything. I think I need to find it again.
Finances are another issue for us as well. If I had a car, I could take him for a nice drive along the water. We could go to the park, or other places where he wouldn't have to walk much. He could sit at the beach and play his drum, but....
So, the next thing I need to do is get the ball rolling in regards to getting into co-op housing. If our rent is less, we'd actually have money to do a few little things. I might not be able to get a car but on the days he is up to riding a bus, I could afford to jump on myself. We could get into a better area - somewhere that's closer to a park, which I know would pick up his spirits. I've already spoken to the social worker at the hospital about this and she's willing to write up a letter. The wait list is really long here, something like two or three years, but the social worker said there is a chance we could get a place quicker. Not only would this free up a bit of money, we could also get a second bedroom which would be extremely benificial.
Even though LL might never have much energy, there are other ways to bring joy into his life. To me, health is more than body. It's body, mind, and spirit. He's an incredible musician who doesn't have a place to bang his drum. If he had a piece of grass that was really really close, like a little yard attached to a townhouse, he could step outside and do as much tai chi as he was able. He's also mentioned carving....he needs tools and a little space to sit outside with the birds singing nearby. You know, just writing this makes me feel hopeful. There may not be much I can do in regards to his physical health but there are other things I can move forward with.
Thanks so much everyone. Keep sharing!
:grouphug;
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TW,
You are something and someone special!! I so wish I knew you two, you two just sound so wonderful!
Thank you for the kind thoughts. I actually had this conversation with my fiancee, who lives 2 hours away.
He was disgruntled because I am NOT being taken care of by my family who live closer to me. I end up
doing things for THEM instead! That really made him mad!
Joannie, I like that idea of macrame!! There may be some handheld games available. What is the
association for the blind? They may have a website with ideas.
On another note, I am very pleased with myself! I worked ALL week!!! FIrst in a a long time!
Yay for me!
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MyssAnne..good job on getting through a whole week of work. It must be very difficult for you and with the added burden of not having much help from your family and them maybe taking advantage of your good nature. Seems like possibly your fiancee has a good point..you think?
TW you have given me a great idea! When you mentioned that LL likes to play the drums, I thought of a musical keyboard, you know like a piano. He told me years ago that he always regretted not ever learning how to play the piano. I have been looking online for a keyboard for the blind. He doesn't read braille but if the keyboard had some indents, like the phone and the computer keyboard( phone has it on the #5 and the computer has it on the j & f) then this might be something that he can enjoy and with Valentines day next week it will be a great gift.
Once again, this board is the best with the best people ever.
Thanks,
Joannie
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MyssAnne,
Why are you doing things for your family instead of them doing for you? Do they realize what you are going through on a daily basis or do they think that because you're able to get out and work that you are able to take care of yourself? There are family members who don't live with the person, such as dear Odat ,who is making the effort to help her mom. (Your mom is lucky to have you Odat.) Unfortunately, not all family members understand and from what I've witnessed, don't ask. It seems that dialysis is something that is swept under the carpet, or something 'we'd rather not discuss.'
I visited with my family for the first time in five years. Not one person asked me how my partner was, anything about dialysis (which they knew about) how we were managing, nothing. And so, I pulled out the photos of him hooked up to the machine and put it on the table. "So," I said. "This is his kidney. You see this?" I said pointing. "This was the thing they stuck in his neck so they could hook him up to the machine." Maybe they were afraid to ask but I sure wasn't afraid to tell. I'm such a brat sometimes when it comes to the way I relate to my family.
I don't know what type of relationship you have with your family members or how much you tell them about what you go through but if you're anything like LL, you suffer in silence and don't tell them how you really feel. I'm also going to take a guess that you don't want to complain or bother them, or say something that may lead them to worry about you. You know what, they worry anyway. I could be way off base here but someone who is reading this is saying, "Yep, that's me." LL doesn't make any demands on me and if I didn't ask, he would suffer in silence. He would go without food when he doesn't have the strength to stand long enough and make it but since I know him too well, I make sure he eats.
Let's talk about this, let's tell people how it really is, and lets not feel ashamed or less than others because of illness, or the financial challenges, or both. Let's not feel like we no longer matter in society because we can't go out when we're invited somewhere because someone in our home has to hook up to a machine half an hour before they expect us to leave.
I'd like to keep talking. And I'd like to ask questions. Lots of them. My first would be really simple. "Why is someone put on a machine to stay alive but not helped with meals when they don't have energy to cook it themselves, especially when diet is so important? What about housework? Should these things not be a part of the overall treatment?
Oh, I could go on...
MyssAnne, I don't know how you do it but YAY for you for working a whole week through!
Joannie - That's an awsome idea! If you can't find one with indents, don't worry. You don't need them. When someone knows how to play, they're not supposed to look at the keys. He'll hear the difference in octaves. He'll be able to feel the black keys from the white. The black are raised, plus, if you look, you'll see a group of two and then three. The first white key in front of the first group of two black note is a C. Start there. It's the scale without sharps or flats. Count only the white and go up - C,D,E,F,G,A,B....or sing do, rae, me...you know the song...and then you're back to C. Oh, I'm so excited for him! Tell him his first lesson is sent with lots of love. Happy Valentines!
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TW, I'm glad you said that about the keyboard, I had thought of that too, he CAN do it on
a regular keyboard, what a wonderful idea!! I say go for it JB! It's not going to feel like
'disabled' busywork. Oooo I hate that.
TW, you asked about my family. My father is severely depressed, and in the midst of bankruptcy and losing his house, very dependent emotionally on my and my sisters. He knows, but doesn't recognize that I have
difficuty. He really doesn't care. I don't get upset about it, that's who he is, and has been all my life. I just
love him for being my father, and do what I can.
My sister is also depressed, and has an alcoholic husband. She runs away by attending church several times
a week, meetings, choir, etc. She has no time to help me. I know. I have my thoughts on that, but
I'm not gonna say anything.
My other sister lives an hour away, but works in this town, so I see her at erratic hours. She really can't help me, but tries the hardest. She is the one who is starting procedures to see if she is compoatible for a donor kidney.
My son lives with my sister in another town, I see him maybe once a week, sometimes every other week. He puts my trash in the bin for me, arranges my boxes, picks up trash, and gets on the computer til I get home from work!
I have a dear friend at work who brings in the boxes every other week, her father is dying, and liives 90 minutes away, so her free time such as it is, is devoted to bering thre with him.
I guess I need 'better' friends and family, eh? You ARE right about one thing, I do need to be more
vocal about my life and how it is. I AM uncomplaining, hate to whine, was raised to not whine!
My mamma would be so proud of me!
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MyssAnne,
I'm sorry to hear about your family and their challenges. I used to do for every one in need until I could barely do for myself. Finally, I had to say, "enough." I learned the importance of setting boundaries and now it's much easier to take care of my household. When I can be there for others, I am, and when I can't, I can say so. I've lost a few friends because I no longer could be there everytime they needed someone but you know what, they weren't really friends anyway.
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Anne, I'm so sorry you have such problems with your family. I can't imagine trying to go through the last two years without my husband here with me and my parents only an hour away and willing to help with my son whenever I needed it. I also was raised to not be a burden to other people, but sometimes we have to let people know when we can't do everything they're asking us to. It's all part of the mind, body, and spirit healing that TW spoke of.
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Sometimes whining is the only thing you can do.
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And sometimes, you just have to crawl into bed and catch your breath.
I was so exhausted today from the worry of yesterday. My partner took a quinine and became really really sick. At one point, I had to help him sit up in bed so that he could drink water. Being a Sunday, I didn't know who to call or what to do. What are we supposed to do when the home dialysis clinic is closed? I asked if he wanted me to call an ambulance but he said he'd be okay...so I paced, I walked in circles, I nearly passed out from the anxiety of it all. I just wanted to know what to do. If he went to the ER, he would have had to sit in emergency for eight or more hours only to be sent home. Or he needed to be there.
I knew I needed to calm down so that I could think clearly and so I sat and focused on my breath. I don't know what caused me to pick up the bottle of quinine but when I did I noticed the phone number of the pharmacy. I didn't expect anyone to answer but it was worth a try. On the second ring, a kind and helpful man picked up the phone. I told him all of the symptoms, he verified that yes it was a reaction to the drug, and of course to stop taking it. I then asked him if I needed to get him to the hospital and he said no but to contact my partners doctor.
The flu we thought he had might not have been the flu. Somehow, I think his symptoms of last week were from the first dose of quinine he took. I didn't even clue in as I was concerned about peritonitis, as was the nurse when I called last week.
Oh, it was scary. So scary, all I could this morning was lie in bed until noon. Good thing I didn't have anything booked and an even better thing that I was planning to go for a walk with my friend this afternoon. After I told her what happened, I couldn't help but tell her I needed a bit of nurturing. She took me for coffee and a nice ginger cookie, and when I asked her if she'd mind driving to the beach so I could listen to the waves for a bit, she obliged me. The waves always have a way of calming me down and picking up my energy. Fortunately, my partner was okay to leave alone for a little while today so that I could heal my nerves, which by the way, aren't fully recovered.
Whenever a crisis situation comes up, I do my best to stay in the moment, but sometimes, the moment itself is stressful, especially when it comes in the form of making the right decision. I don't want to go against my partner's wishes but sometimes I don't know if he really knows what to do as he always says he's going to be fine. Or he says he's ready to go home. I know how hard this is on him and if he's conscious, it's not really my decision. Is it?
I don't know what they're going to do for the cramps now. I am really careful with the foods I buy and the meals I cook. In fact, the latest blood tests were looking really good, except for the PTH levels of course.
How do you know what to do when you just don't know what to do?
Breathe!
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When I laid in bed last night, I contemplated my anxiety. On the surface, it was easy to see that I was worried. Who wouldn’t be? But when I looked deeper into my emotions, I realized I was not accepting what was taking place. In other words, I was not in control. As a spouse and caregiver, I want to know exactly what is going on, understand, and fix whatever problem comes up. Contemplating this recent event also brought me to a place of looking at how true my acceptance of having a partner on dialysis is. At times, I feel I have accepted this, but during stressful moments, I realize accepting the suffering of my loved one is something I have to constantly work on.
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When I laid in bed last night, I contemplated my anxiety. On the surface, it was easy to see that I was worried. Who wouldn’t be? But when I looked deeper into my emotions, I realized I was not accepting what was taking place. In other words, I was not in control. As a spouse and caregiver, I want to know exactly what is going on, understand, and fix whatever problem comes up. Contemplating this recent event also brought me to a place of looking at how true my acceptance of having a partner on dialysis is. At times, I feel I have accepted this, but during stressful moments, I realize accepting the suffering of my loved one is something I have to constantly work on.
You may have accepted the idea and the reality of dialysis, but accepting the suffering of a loved one when there's nothing you can do to ease it is something I don't think any of us could do. Do not expect miracles from yourself, you're not God. You can expect ups and downs like this. It's part of life whether you have a sick partner, you're sick, or if you live a semi-charmed life and no one you love is sick. What you can expect is that tomorrow will be better, and you'll learn and grow from your experience and be better prepared for the next challenge. You can also expect us to be here for you whenever you need to let off some steam. :grouphug;
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It's the letting go of needing to control I'm talking about. Like Accepting what I cannot change. The more I can accept that I'm not in control, the more peace I feel. When I can remain peaceful and calm, I am more helpful to my partner. I don't know about anyone else but when I'm around someone who is in a panic mode, I get stressed.
Remaining calm is also important for my own health. I can get myself so worried that I worry about my own heart. I've had so much stress over the past few years that a few years ago, my doctor prescribed me pills for anxiety attacks. Instead, I started a form of meditation. It did wonders and now if I overstress, I can usually bring myself out of it by reminding myself to breathe. Focusing on one's breath can bring you back into a place of calm, and when there is a crisis situation at hand, calm is what is needed. Well, it is for me. Hope I'm making sense.
It'is good to be able to come here and share. It's another way of calming myself after these stressful times. Thank you KT. You're sweet. :grouphug;
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It's interesting how another good night's sleep helps. You mentioned about accepting the suffering of a loved one KT, and I know my sentence didn't make sense. When I wrote that, maybe what I was trying to tell myself is this: I need to remember that it's okay to accept the emotional suffering I go through at times. Thank you for this reminder. I do my best to be strong, to be there 100%, but I'm only human. It's okay to get scared sometimes. Yes, I get scared sometimes. :grouphug; to me.
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TW, how is LL doing? Has the quinine residue left? Is he feeling better?
I'm glad you took time out for you, giving yourself some time away. We all need that, dont always
do it unfortunately.
As for the cramps, that is so odd. I take gatorade for mine. If his numbers are good, then
there's not much more as to the diet part you can do. I hope it settles down for him. They
can be so painful.
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The effects of the reaction to the quinine are gone but the cramps continue. He had another bad night last night and is completely exhausted today again. I haven't heard anything about gatorade. I guess the best thing to do is bring this up at his next visit with the dialysis team at the end of the month, and keep up the potassium and fluid as the nurse suggested. It seems he is quite sensitive to a few of the drugs he prescribes. I'm wondering if it's his hep C.
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yeah, not only are the cramps painful, it wears you out the next day, completely. Daggone it.
I'm glad the quinine is now out of his system, that should help, somewhat. Um. heating pads?
Sometimes that helped me, to put something warm on that spot. Just where is he cramping?
is it all over, or is it his legs, arms, hands? One specific spot? With me, it was my right leg/foot.
I always knew, I could tell when it was coming. Oh man. I do swear by gatorade though. Even
a small glass would help, it's certainly worth a try.
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His cramping is in his shins and calfs but mostly his calfs. The nurse told him to drink tonic water because of the quinine and he can do that but still, it's just not working. A heating pad, eh? Oh man, it's buried behind all those boxes. I once tried to put my hand on his leg when it was cramping but he said not to touch! Wonder if the weight of a heating pad would hurt? When he was hospitalized before they discovered the shape of his kidneys, all of his skin came off his legs from the 60 pounds of fluid needing to come out. I don't ever want to see that again! Anyway, he never regained the muscles from too many months of being bed ridden, the vasculitis, and infection that took over. Now, he seems to cramp every few days, can't walk for the next few, then cramps again. It just never ends.
I think I'll look at the pile of boxes and see if I can extend my arm long enough to reach the box I hope the heating pad is in.
Thanks MyssAnne.
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Shins and calves, eh?
Another trick might help: Hot towels. Moist heat. Since he's had so much trouble already, I'm really
hesitant to suggest much, not knowing what would help, and what would not.
I do understand his not wanting you to touch it though, I was/am the same way, DO NOT TOUCH!!!!
It's extremely sensitive to touch for some reason!
TW, hang in there. I have a lot of admiration and respect for you, I sure wish I had one of you!!!
I do, actually...but he's in 2 hours away, doggone it!!
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Thanks for all the suggestions MyssAnne. I found the heating pad! That's a start. I can understand the sensitivity, well not really, but when I saw how his toes lift up as though his muscles are shortening, oh boy, I can't even imagine how painful this must be.
I cannot thank you enough for your support. In fact, I feel kind of bad. Here you are, living with this, helping me!
As I reflect on the love on this site, I am deeply moved. How people, who in their own suffering, come together to help and support others makes me sit back in my chair. There are so many posts I want to respond to but in the end, I just sit in silence and exhale love.
I may not be able to physically help you MyssAnne but I am with you and sending you lots of love.
May everything you need come to you on love's wings.
:grouphug;
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TW, you deserve all the support in the world! In some ways it can be harder for the caregivers -- doing all they can, and feeling helpless to really change things. Hope that heating pad helps.
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TW, when I got cramps in my calves and shins, it would sometimes help to get up and walk around the bedroom. I realize if he's hooked up to the cycler that range is somewhat impaired, but even just a few steps in each direction, back and forth might help.
Sorry he had such problems with the quinine. My nurse also suggested a spoonful of vinegar - I think she said apple cider vinegar? - might help. I never tried it, but it's worth a shot!
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LL has an extension on his cathetar and is able to walk around but sometimes, even that doesn't help. One time, this happened in the day he wasn't hooked up. I was out and he was trying to catch up on his sleep when he cramped again. He said it was so bad he couldn't get up for fifteen minutes. It's hard to hear when these things happen and I'm not here to help him.
I'll get some apple cider vinegar the next time I go shopping. Thanks ladies. You are so awesome. I tell ya, this site is a life saver for me. Instead of walking in circles wondering what to do, I'll just walk to the computer and sign on here.
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TW,
Please keep us up to date, not only on LL, but you! How YOU are doing! I made dinner for my dad
today, he was thrilled to say the least! I was tired, but it was a good tired. I'm glad I did it.
I may be physically sick, but he's severely depressed, and doesn't cook for himself, nor take
good care all around.
Tomorrow I see my son!! Yay!!! I get him all day, it's a holiday for me too!!! Yay again!!!!
And yes, I'll be cooking for him too!!!
Annie
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You made dinner for you Dad? Wow, Annie, that's great. I hope this means you're also eating well. Sounds like you're having better days.
Me? I'm okay but last night at 11 pm we received a knock on the door. Oh oh, it was the manager. There was a leak and they had to knock holes in our bathroom wall to find it. Only, it wasn't coming from our suite. They said they thought someone upstairs spilled a pail of water. Great.
The problem with this suprise visit comes in the form of letting the cat out of the bag. Literally. Well, almost. She wasn't in a bag but she did appear and now the manager knows we have her. We left her on the smaller island when we had to rush back to this one when my partner started dialysis. But when our friend couldn't keep her, we brought her back. The problem is this: It's a non-pet building but it was the only apartment left in the city when we arrived. A lot of people here have cats, including the manager, but they changed the rules a couple of years back. In order to keep our cat, we need a doctor's note. For those who don't know this, the tenancy branch in Canada states that if someone needs a pet (to bring down high-blood pressure for example) they can have one. The catch is that you have to pay a damage deposit. We don't have that kind of cash. Anyway, the manager didn't say too much because the plumber was here and it was late, but...today is another day.
I don't know what will happen from here but since we've already gone through so much and have learned that what we need always comes when we need it, I'm going to do the thing I've had to learn. Trust.
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Hope you get to keep your cat! Maybe the landlord will just let it go, considering all you're going through.
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Oh, TW!!!!
I so hope it goes well with the cat. I know exactly what you mean, they ARE needed
for stress relief, AND!! they're our babies!!! (In my case literally!!).
Let us know how it works out with the landlord and what she has to say. Would there be
another apartment available by now? But the packing....ugh!!!!
I think about you, and how you're doing. Darn it all. You need some good news in
your life!!
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TW, good luck with the kittie cat and keep us posted.
Maybe we can start a petition or something.
I have 2 that are my babies so I know how you feel.
Hang in there!
Joannie
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TW, so sorry to hear about your surprise visit! My cats, before they both passed several years ago, were my babies. They're absolutely irreplaceable! Hope this works out well for you.
Anne, great job making dinner for your dad! How was your day with your son?
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Katie, my day with my son was great....until my sister picked him up after she got off work (she lives in one town, works in my town!),
and he had my car keys!!!! The bum!!! My sister called and said she'd bring them by that night...this was at 9!! I was already hooked up on
the cycler, so I got off after my fill, turned on the porch light, opened the door for her, hooked up and fell asleep! That was really soo nice
of her.
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Well, there hasn't been any word about the cat. So, I'm going to assume, and hope, that she is letting this go. It wouldn't be good for her to come to us with this today anyway, especially if it was something I didn't want to hear. But, I'm going to take a breath and release unnecessary fear. Our cat has been with us for ten years and she is going to remain with us for the rest of her life. Period.
:rant;
Oh boy, I'm charged this morning. LL had another horrible night with the cramps. All night long. I found him sitting up this morning on the couch, asleep. He said he only managed about an hour AGAIN.
So...I called the nurse. Since we always get someone different, I told her about his reaction to quinine, the cramps, how he's changed the last bag to a 2.5 instead of a 7.5, etc. He's now doing a twin bag exchange to get rid of the 2.5 by putting in a 1.5. And he's to do all 1.5's tonight.
What is pissing me off is this: When she asked why he didn't go to the hospital when he had his reaction to quinine, I told her. I told her I called the pharmacist and he said he didn't have to go. I told her that getting him to the hospital is not an easy task and to sit in ER for eight to twelve hours when you're sick, just to be sent home, is the reason he didn't want to go. And then there's his weakened immune system and how he always seems to catch something whenever he goes to the hospital by catching something. There's all the flu's and stuff, plus MRSA is rampant in the hospital and if he gets that, he won't survive. So &*)&(*7 them!
It sounded like she was mad at me for not forcing him to go. And then she told me I should have called the Renal unit at the hospital. Well, we've done that before and all they said is,"if you're concerned, bring him to the hospital.' Of course I'm concerned, that's why I'm calling for your advice." Their advice isn't something I didn't think of myself.
Can't they for once put themselves in our position. Can they imagine what it's like when you don't have the money to call a cab or pay for the ambulance, or put him over your shoulder to get him in the cab, or sit in the ER to catch their bugs, just to be sent home to deal with on your own AGAIN!
Okay, I'm done ranting. And I'm tired of being gentle with them so that they give him proper care. ARGH...
Breathing.....
Sorry to hear your sister showed up after you hooked up Annie.
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Oh TW.
Darn darn darn. There HAS to be something to alleviate LL's cramping. Darn it. I know exactly what you mean about the medical profession
not understanding what it takes to haul someone sick to the hospital, only to sit there. For hours. Exposed to other people's infections and
germs. THEY don't get it. Grrrrr... You did the very best you could do with what you had at hand. Quite frankly, it would have made it a
lot worse if you had taken LL to the hospital, he would have been so uncomfortable as well as being in pain.
I'm crossing my fingers that the landlady says nothing about the cat.....
As for my sister, well, she was returning my key that my son had taken with him. I NEEDED that key!!! It was my car key AND my house key!!!
Gotta have those!!!! I don't normally leave a light on outside, unless I know someone is coming. I'm weird about that, I like it pitch black when
I sleep, and I can see (or THINK I can see) the porch light from my bedroom, which bugs me otherwise!
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Exactly! They seem to not have a clue in regards to certain things. You're right, going to the hospital would have been hard on LL, not to mention all the germs going around. Do I need to remind them that he has Hep C and what that means? Honestly, sometimes I don't know about these people. I recognize they have a job to do, and that's just it, it's a job. This is our life! I responded on Petey's post and what I said is that we know our hubby's better than anyone, we have our intuition, we live with this, and even though the medical team may think we're complete idiots, we as caregivers and spouses are THEIR lifeline to their patients. Oh, get me my sword. The warrior has come out!
In regards to your keys, darn it, you do need to have those, especially when you have to get in to hook up!
Oh, I think a few of us need to rant today. Goofynina is laid to rest today and even though I've never spoken with her, I can almost here joining us in this rant.
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Ya know what? I had a feeling almost of anger all day today. That's why. Because of GoofyNina. I'm still angry she's gone.
Thanks for saying something TW, so I could recognize it. I hate that, when I have feelings and I can't place just why I have them,
or really, what they are.
I'm cooking (crockpot!) for a friend here at work, her dad is dying, 2 hours away (close to my fiance's house), and she is leaving Thursday to
take family there from the airport. I told her I'd make a simple dish, since there would be so many people coming and going. Me, I was
indulgent and bought some crab. REAL crab (at a discount store!), and will have that tonight. I need some cuddling, darn it, and good,
tasty food will do that for me.
Oh man....if I had not had the keys to get in..not good!!! It's hard enough waiting til I get off work to do my exchange, I can't imagine not being able to do it at all!!!
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I think it's important for all of us to recognize the stages of grief, whether we spoke with Goofynina or not. Everyone here is personally touched by kidney disease and dialysis, and to hear that someone in this dialysis community passed away is going to affect each and every one of us. I know it has me.
I'm sorry to hear about your friend's dad. You are so wonderful for cooking and helping out, giving the hug they need.
Here's one back to you...oh heck...take a few....
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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TW!!!
I needed those!! I didn't realize it til I saw this, but I really needed those hugs! Thank you!!!
And back at ya....
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Glad I could be of help. And thanks for the hugs back. :)
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Okay, MyssAnne and The Wife, send me some hugs, too! Here's mine to you ... :grouphug;
I get frustrated with MOST of the medical profession -- they don't listen to me, the caregiver. They don't listen to Marvin, the man who knows his body the best! Damn it! (Marvin's vascular surgeon, however, does NOT fit in this category. He always listens. He always asks for our input. He's great, and we love him.)
I'm missing Goofynina, too. Even though I've only been posting for a couple of months (lurked around for a few months before that), I really liked that chick. She was one-of-a-kind. What are we going to do without her?
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Here we go Petey, these are for you:
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
What are we going to do, you ask? We're going to remember the vibrancy of Goofynina, we're going to carry on and make the best out of the worst, and we're going to be there for each other.
Last night, while in the grocery store, I noticed the colour red on different items. They were from Valentines Day. As I stood there, I thought of Susie, of her passing on Valentines Day, and of the boa around her neck. I've always wanted one of those boa's and remembered the red one I saw in the store when I was hanging out with my daughter as she shopped last week. My mind started to swirl and all of a sudden, a thought came to me. BUY ONE! Wear it for Goofynina, pass the word to the other women at IHD, and when we need to, put it on, laugh, celebrate life, and honour all we go through, all who have been given an extended life because of a machine, and those who have passed on.
As soon as I can, I am going to buy one. I'm going to wear it to the community center when I attend the woman's group that has been set up for women to nurture each other through difficult times. When they ask what it's for, I'm going to tell them about a woman who lost her battle to kidney disease, and how, no matter how she felt, always brought love, laughter, and inspiration into the lives of others.
I hate dialysis, dealing with the medical staff, the boxes, and this illness, but without all of it, my partner wouldn't be here today. When I get angry, frustrated, or just plain sick and tired of it all, I remind myself that every day my partner is alive, is a gift.
We ARE going to carry on, and we're going to do whatever the day calls us to do. And somewhere, a beautiful woman with an angel white boa is cheering us on.
:grouphug;
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And Petey, you're not alone with your frustrations. Ummm...maybe we should wear our red boa's when dealing with them. Hold our heads up high, flick one end of the boa behind us, and let them know,we will do whatever it takes to get their attention!
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I gotta get me a boa! Do you think Goofynina would understand if I wear a pink one (pink's my fav color)?
Sluff -- can you get us an icon with a boa?
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I think Goofynina would want us to wear whatever colour we choose! Gosh, I'm wishing I was closer to where everyone is having the walk. Can you imagine everyone wearing boa's? :rofl;
I second the motion to have Sluff find us an icon of a boa. :)
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FIrst of all. Petey:
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
TW, I LOVE the idea of boas!! Purple for me. I'm a purple kinda gal!!!
I thnk Goofy would be so tickled to know we were carrying on her attitude towards life!
It's a wonderful way to remember her, and her impact on us.
And some more
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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You girls are the greatest! :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; that's why I love this site!!
Now, do we need a "name" for all boa-wearing women from IHD ? (and let's not restrict it to just females -- I think that Sluff or Boxman could possibly be awfully "cute" in a boa!)
What do you think?
...Goofy's Girls
...BiBs (Broads in Boas)
...The Queen's Chicks
Help me, here.......
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Let me throw in some :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; for you also.
Can't get too many hugs.
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How about Goofy's Gang? That way Sluff and all the boys can join in. I'm now imagining Sluff riding his motorcycle with a boa around his neck.
You know, I keep thinking that something more has to be done to increase awareness. I'm thinking that maybe we can take this idea about the boa's to the Kidney Foundation, the renal wards, clinics, wherever there is a dialysis machine or related information about this disease. Okay, I’m just going to let my mind go…get stores involved, sell boa's, raise money to put into the pot that the Kidney Foundation dishes out for whatever is needed or create something ourselves. Whether we like it or not, this is a part of our lives, so why not do something that can do some good?
I could be thinking out of my hat but hey, great things have been created by a thought. Just look at this website.
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Oh, Wife, that's a great idea for awareness!!! You are too smart! When I see a pink ribbon, I think "Breast Cancer Awareness" -- no words are necessary. Wouldn't it just be the bomb if the sight of a purple boa made people everywhere think "Kidney Disease Awareness"? The boa is a flashy, makes-you-look kind of thing (kind of like the name "I Hate Dialysis" -- makes you pay attention and want to find out more). The boa is a different kind of symbol, and it will get attention.
Let's think this thing through seriously. We'd have to know how to get started with it and if we wanted to raise funds (if so, where do they go?) or just awareness. We have to plan like this will take off like a rocket and exceed even our expectations.
I thought I wanted a pink boa -- but, no, it has to be purple. That was Goofynina's color. Like you said, "When they ask what it's for, I'm going to tell them about a woman who lost her battle to kidney disease, and how, no matter how she felt, she always brought love, laughter, and inspiration into the lives of others." Using her as our inspiration for this, we can make Goofynina "live" on earth forever. "Goofy's Gang" -- that's the perfect name!
Sluff, on his motorcycle, with a purple boa flapping along behind him is a sight I must see!
Okay, where do we start?
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I don't know about smart but I do have a creative mind. Purple eh? I was thinking Red because of Valentines Day, in memory of....but if purple was Goofynina's colour, well....
IMAGINE
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One of those weird computer things just happened. After I wrote IMAGINE, my post posted. Don't know what I did but there you go....so that's where we start. Sit and imagine, let ideas come to us, then come here and share.
Goofynina, you will always be an inspiration. Thank you for touching my heart.
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Hey, red's fine, too. I just thought I remembered reading somewhere that Goofy showed up in Vegas wearing a purple boa and a tiara. Help! Someone who was in Vegas in October -- what color boa did Goofynina wear?
Wife, my mind's running. I'm thinking, thinking, thinking. This could be BIG.
Here's a big ole hug for Goofynina :grouphug; love ya, girl!
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I also love purple but I'm thinking about red again - in memory of for all who have passed, Valentine's for Goofynina, heart as in love, blood representing hemo, passion for life...
It is big. Kidney Foundation. Local TV stations. Interviews. Walks or motorcycle runs. Oprah :)
:grouphug; to you Petey. Good luck tomorrow. I have a busy day and am not sure when I'll be back on.
Sweet dreams :-*
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I wasn't there, but purple was the color of the boa. There are photos somewhere on the site. :)
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It was a purple boa. I will buy mine as soon as I find one. March is kidney disease/organ donation month. I am going to wear my boa all month! I do not think color should matter, just the fact that the boa is there in memory of her.
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Wow. What a great idea. Boas for all!
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Don't know how I've missed this one but I LOVE the idea. I had a colour consultation once and was told that purple is one of those colours that suit everyone so I VOTE FOR PURPLE BOAS! :2thumbsup;
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In literature, we teach color symbolism.
Purple is symbolic for royalty -- how fitting is that? Goofynina was the "Queen" (both self-proclaimed and IHD acknowledged)
Red is symbolic for love / lust, pink for passion / friendship, white for innocence /purity , black for evil / sometimes also power, yellow for cowardice, green for life / sometimes also jealousy, etc.
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I was thinking about the royalty thing too in regards to the colour purple. Sounds like purple boa's all around...
Now onto something else:
For the first time in a long time, my hubby slept all night last night! Which means, I slept too! The second night of 1.5 did the trick with the cramping issue. Let's hope this continues.
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FINALLY!!!!
I'm so happy LL AND you got a good night's sleep!!! Man, it feels good, doesn't it?
So the answer seems to be not as much taken out? Makes sense!!! Now, let's shoot for
another night of sleep!!!
:grouphug; :grouphug; :grouphug; :grouphug;
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Ok ladies, I have been gone so couldn't jump in sooner. What you all don't even know is that while Alohabeth has been organinzing the kidney team "walking for Nana and Nina" she had decided the girls would walk wearing tiaras and purple boas!! I was able to tell Susie's family about the Walk and the tiaras and boas and they loved it. They want pictures, too. I am so proud of how my family has pulled this together to honor Susie. AlohaBeth's team in now #1 in money raised in our area (over $4000 since the 15th!) and three of my children are in the top four fundraisers. While I was gone, the team swelled from 5 to 11 with 4 more joining. Get your purple boas and wear them on March 29th and walk in spirit with our team to honor Susie. It is just a start, but we can make the purple boa a real movement!! Also, the area newsletter is going to have a feature article about our team--so more people will read about our Susie. If you want to have some good laughs, go to the thread about "brits on dialysis" and you will learn more about the tiara. You will see why she showed up in Vegas with her tiara and boa looking like the queen she was. It is one of the funniest threads on the boards.
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Sleep is definately good. I slept in a bit this morning and our cat starting pulling my hair with her teeth to get me out of bed! I got up, looked at her food and water dish, shook my head at her when I realized both of her bowls were full, gave her a couple of pats, turned over and went back to sleep. And then I heard LL get up. (He sleeps in the living room with his machine and tv.) I could instantly tell that he had a good night sleep by the funny things he was saying as I was making the coffee, and of course, that I didn't get woken up by the sounds he makes when he's cramping.
His hands were cramping a bit after breakfast and he went back to bed after a few hours. He was really tired, but all in all he had a good day. Me, well, I cooked up a storm to put in the freezer. Two boxes of veggies and high potassium fruits were given to us. And when I say two boxes, I mean two boxes! My fridge is so full that I had to put a box outside, plus a large bowl of apples and pears. I wasn't expecting either one of these boxes but when I pulled everything out, I was doing the yippee, lots of food, and oh my god, what am I going to do with everything, dance. But it's good. It'll cover us for the long month ahead.
These foods are from a program that supports local growers. You order once a month at community centres, it's cheaper than the grocery store so you get more, and mostly organic. Unless you get the all organic box. Our city is working on sustainability and pulling together as a community, and since we live on an island, it could come in handy if there were ever a crisis. Anyway, the regular box was given to me for some volunteer work I did awhile back, and the all organic box was sent as a gift by an old friend who tracked me down. Holy smokes! Talk about a lot of veggies and fruit. You know the saying, when it rains, it pours? Well, it poured an abundance of healthy and fresh grown foods. Good thing I love to cook and create recipes, and good thing everything in the box is good for LL. The nurse said to keep up his potassium and I think with everything we now have, that shouldn't be a problem. :)
I am so grateful for all of this and for the fact that I had enough sleep to wash, sort, peel, cook, and create aromas that I'm sure the whole neighbourhood could smell. :2thumbsup;
It was a beautiful day. :yahoo;
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Ok ladies, I have been gone so couldn't jump in sooner. What you all don't even know is that while Alohabeth has been organinzing the kidney team "walking for Nana and Nina" she had decided the girls would walk wearing tiaras and purple boas!! I was able to tell Susie's family about the Walk and the tiaras and boas and they loved it. They want pictures, too. I am so proud of how my family has pulled this together to honor Susie. AlohaBeth's team in now #1 in money raised in our area (over $4000 since the 15th!) and three of my children are in the top four fundraisers. While I was gone, the team swelled from 5 to 11 with 4 more joining. Get your purple boas and wear them on March 29th and walk in spirit with our team to honor Susie. It is just a start, but we can make the purple boa a real movement!! Also, the area newsletter is going to have a feature article about our team--so more people will read about our Susie. If you want to have some good laughs, go to the thread about "brits on dialysis" and you will learn more about the tiara. You will see why she showed up in Vegas with her tiara and boa looking like the queen she was. It is one of the funniest threads on the boards.
You were posting at the same time as I was Paris.
Oh wow, this is great to hear. I need to find out if there is a walk here. I'm on Vancouver Island, Canada. When I looked it up on the net, the only walk I could find isn't until September and it's up island.
If there isn't a walk, I might just join in by putting a purple boa around my neck and walking around by myself. :)
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I think every area has their walk at a different time. We can't all walk together, but we can walk in spirit--so I will remind you to put on your boa on March 29th and you walk right where you are. You'll be part of the invisible team walking beside us (well, maybe not me! 5k might be more than I can handle, but I'll be there!) Isn't wonderful how we all came up with similar idea?
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Isn't wonderful how we all came up with similar idea?
Paris, we were all inspired by the same beautiful lady -- a laughing lady in a purple boa! It must be that Susie sent several of us the same idea because she was afraid one of us wouldn't get it (probably me -- but, hey, Goofy, I got it!)
I love it! I love it! I love it!
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hey there ladies, what a great thread! I just had my morning coffee and read through it all. Can I jump in? I love your writings TW! And I too will be wearing a purple boa!! LOVE IT! You all are so creative.... TW - I don't know much about PD, but when I feel tired and cramp up is when I get too dry. Sounds like you are lightening up on how much fluid you remove by taking about the 1.5 two nights in a row? By keeping some fluid on it does help - our bodies need water and the oxygen in the water for our cells to be healthy and able to refresh themselves. I understand the process of dialysis, but really think we as pts do better when we don't get so dry. I remember in clinic they stress it so much to get to your dry weight. At home I can control it so much better and feel better now too. Too much fluid is bad, and it is a tough balance. Kudos to you for taking such a big role in helping your husband.
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Wonderful ideas!!!! I love the idea of purple boas, we ought to let everyone else know where we get them if we find any, so
others can get them as well!!
TW, I am thinking of you, how did last night go with the exchanges for LL? Cramp free? Oh I hope so.
And congratulations on your 2 boxes of healthy foods!!! What a wonderful treat to have!!!!
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MW, glad you and LL have had a better night and so glad about the fresh groceries sound great.
re: purple boas Oriental Trading.com has them. Fabric and craft stores usually carry them (JoAnn's, ACMoore, Michaels) and party supply stores. Can you tell AlohaBeth has been researching??
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I was about to post earlier this morning when I heard him. Cramping. Again. Another bad one. Just a few minutes before, he was sleeping, soundly. A few hours earlier, at four A.M, I was awoken by the light turned on in the living room. Why was he up? Could he not sleep? Was it another cramp?
"My legs are aching," he said. "The start of another cramp. It woke me up."
All I could do was sit beside him for awhile before heading back into bed. I don't know what to do to help him. He's now using the lightest bag of fluid and there's plenty of potassium rich foods for him to eat. Maybe it is his dry weight. He has been eating better this past week and even though his dry weight is slightly above what's written on the top of his record sheet, he might have gained a bit more. Two weeks previously, his appetite was poor, so this would make sense. A balancing act is an understatement. I'm beginning to wish I knew how to juggle. Maybe the act itself would bring me the answer I need.
So how does one decrease the amount of fluid removed when there might be weight gain, and you're using the lowest percentage available?
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Oh no. This is a very delicate balancing act. In order to pull fluids off you need to use either a stronger dose OR more 1.5s.
I wish I knew what to tell you. You're doing what you can, both of you, but unfortunately you don't always know if it will work
until it doesn't.
All I can do is offer hugs and my best wishes.
:grouphug; :grouphug; :grouphug; :cuddle;
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His ankles are skinny, so this is a problem of having too much fluid pulled out. The higher dosages left him dealing with more cramping. 1.5's had decreased the amount of time during the day and night where he cramps, and he's using all 1.5 bags. At least he has his meeting with the Kidney Care Team at the hospital on Tuesday. Maybe there's another solution they haven't thought of.
At least he's not cramping at this moment. And in this moment, the sun is shining outside my window. A fresh breeze blows the curtains toward me.
Ahh...
I sit and take in a breath of fresh air. Sometimes, it's the only thing I can do.
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I wish I knew - with Nxstage I can program it to pretty much take off any fluid amount I need. I don't know with PD. Do you have to use the 1.5? Maybe have him drink more during the day to increase his fluid for the next day or so and still take off as little as possible. As long as he isn't having problems breathing or feeling nauseous. ??
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Paris -- I found some purple boas online at haloheaven.com . (these were the cheapest I could find) They come by the dozen ($11 for a dozen of the 42-inch purple ones, and $24 for a dozen of the 6-foot purple ones). I think I might order a dozen of the 42-inch ones just to see what they look like. Online, they look pretty good. When I get them, I'll let you know.
P.S. It was strictly selfish reasons why I thought about the 42-inch ones...I'm kind of short (5'5"), and I didn't want to step on the ends of the boa and trip. That would be a sight!
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$11 for a dozen? Wow, that's cheap. I saw the red ones at Michael's and I think I'll check there for mine. They must have purple ones.
This is so great, everyone getting boa's...and Petey, it does seem like we were all given the idea to wear these. Purple boa's will definately draw attention, which in turn, will help in bringing awareness to kidney disease.
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...
Ahh...
I sit and take in a breath of fresh air. Sometimes, it's the only thing I can do.
I don't know why, but this image gave me empathy chills and makes me want to cry. Not a sad cry. Just a small cry out to all those who are in this together. The simplest things, so much ignored by most who rush about their life - who don't realize how special just a breath of fresh air is. I just remember wishing my dad could get one really nice whiff of the wind in his last days. I was able to take him out a few times thankfully.
Thanks for bringing me to this place again, one that I suppress so I can get through the day. It is good to feel this emotion though.
So you see, you really should finish that book because your words MOVE people inside. I hope LL finds relief from cramping. :cuddle;
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MW, glad you and LL have had a better night and so glad about the fresh groceries sound great.
re: purple boas Oriental Trading.com has them. Fabric and craft stores usually carry them (JoAnn's, ACMoore, Michaels) and party supply stores. Can you tell AlohaBeth has been researching??
I brought the one to Susie that she wore in Las Vegas - it was in the Halloween stuff - I either got it at Big Lots or at Walmart, not sure, but it was very inexpensive, as could be seen by the trail of feathers she left in Vegas!
Susie's mom said she searched everywhere for a tiara to take to Vegas, I think they finally got hers at The Party Store.
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...
Ahh...
I sit and take in a breath of fresh air. Sometimes, it's the only thing I can do.
I don't know why, but this image gave me empathy chills and makes me want to cry. Not a sad cry. Just a small cry out to all those who are in this together. The simplest things, so much ignored by most who rush about their life - who don't realize how special just a breath of fresh air is. I just remember wishing my dad could get one really nice whiff of the wind in his last days. I was able to take him out a few times thankfully.
Thanks for bringing me to this place again, one that I suppress so I can get through the day. It is good to feel this emotion though.
So you see, you really should finish that book because your words MOVE people inside. I hope LL finds relief from cramping. :cuddle;
:grouphug; to you Odat. I was thinking about you and your mom this morning. How is she? Sorry to make you cry but glad to know you're releasing that which you suppress. I think of everyone who is also going through this and how everone supports each other. The suffering is hard for those who are ill, and hard on their caregivers, but together, something beautiful takes place. This is such a great community. Even though I don't post much around the board, I think of all of you.
Odat, thanks for the encouragement in regards to my book. I'm working on it and will let you know when it's finished.
Sorry about the edits...phone always seems to ring whenever I try to post.
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I have my purple boa sitting on my dresser in the bedroom. I am wearing it to speak about organ donation on Tuesday at Toastmasters. Wish me luck.
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A woman can do anything when she is wearing a purple boa! Rock the house, Kit!
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So how does one decrease the amount of fluid removed when there might be weight gain, and you're using the lowest percentage available?
Just a thought. Is LL drinking enough during the day? When I have a problem with cramping it is usually because I haven't had enough to drink during the day. I also use all 1.5 bags. The amount of fluid removal depends on his transfer rate and dwell times.
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I love it Kitkatz! You wil be great! Post a picture of it! :clap;
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TW - How did it go last night? Did you try more fluids during the day? Just thinking of you.
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I'm pretty sure he's getting enough fluid Wattle, but still, the cramps continue. Something's not right here. Last night he had pressure in his stomach, went to bed again during the day, was REALLY tired and went to bed at 8pm...then awoke from another cramp. I don't know what's going on but I'm worried. Did he catch a flu a couple of weeks back that's still affecting him, is there a hernia, leakage, or did the quinine do something to him? His dry weight is now higher than what it says on the sheet, his blood pressure went quite low, then high again. I'm really glad he has to go into clinic on Tuesday where he will see his neph. I wish I could go with him but Baxter is delivering and someone has to be here. I've got that feeling that tells me something is off.
If I had a purple boa, I'd wrap it around my neck right this very minute. Somehow, just thinking about wearing one gives me strength. It makes me stand up tall and march through the fire of this dreadful disease. Kitkatz, you're going to do great. Here's to you're wonderful speech. :beer1;
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He just got up and said he didn't have any more cramps after he went back to bed last night. We'll see how the rest of the day goes. Maybe I'm worrying too much but in the past, when I've seen him in his low points, he ended up in the hospital.
Taking a deep breath, releasing the fear that grasps, and giving thanks for another day.
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Just a thought - check out this link...
http://www.ncbi.nlm.nih.gov/pubmed/1457907
Quinine is toxic ,and you may consider asking about vitamin E.
Also, when my bp starts to spike at the end of treatment that is when I get too dry. If I control the fluid better, I feel better.
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We got rid of the quinine after we thought he had a reaction to it. After talking with the nurse, she said he must have had the flu because the prescription was prescribed two days after our first call. Still, when he took the second pill, he took a dive. The nurse said he should try it again but I don't think he should. Not when I saw what it did to him. It could have been part flu/part quinine reaction and I don't want to have him go through this again. Vitamen E sounds a lot safer so I'll get him to bring this up on Tuesday. In the meantime, he's still so exhausted, more so than normally.
MyssAnne, in a previous post of yours, you mentioned the complications that a flu can have. No one has ever told me anything about this and if you or anyone else could share what I need to watch for, I'd appreciate it.
Thanks everyone. I appreciate this site and all of you!
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TW,
There's an epidemic, apparently, of flu. I don't know how widespread it is in Canada, but it's
bad here in Indiana.
The one time I am so grateful we are required to have the flu shot. Someone else can jump in here
with more expertise, I'd be grateful if they did, but my experience with the side effects of flu were
the vomiting and the diarrhea, which left me weakened and which also skewed the effects of dialysis.
I do think perhaps LL might need more liquid, as suggested, it's so easy to get dehydrated without
realizing it. Does he have a bottle of water with him at all times? I've tried that, and that seems to
work, I'll drink from it if it's right there, and a lot of times, I drink half the bottle in one gulp. Thirstier
than I'd realized!
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Thanks MyssAnne. I understand the normal effects of the flu but what do you mean by "skewed the effects of dialysis?" The flu's here in Canada are much worse than they used to be and it seems that all he has do is go outside for half a second and he catches whatever is going around. No wonder he doesn't want to go out - even if he could walk mroe than a block or two without wanting to lie down on the sidewalk.
He also always has a glass of water on the go so I know he drinks a lot. For awhile, I thought maybe he was drinking too much but no, it was the other way around. Oh yeah, last night he said his entire body hurt and that doesn't include the cramping or the after-effects. Does anyone else have this problem?
Just when you think you're getting it figured out, someone throws in a wrench and you have to open a whole new section of the book. I just wish he could have one really good day again...you know, a day where we could walk in the park, go for coffee, be NORMAL. Ohhh...what we used to take for granted.
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I'm sorry, I'm not feeling good today, so I'm not as coherent as usual. Today is not a good day for
me. I'm not as bad as LL, but bad enough I had to stay home this weekend and not see my honey.
Too tired for the drive.
What happens is the drain will not be as effective as it could be. Or, it might take too much off,
which also adds to the misery, since it causes the cramping. I'm starting to think LL really needs more
liquids overall.
What is his blood pressure like? Normal, for him? Lower than usual? Higher than usual? If it is lower than usual, have him eat something salty as well as drinking extra fluids. Wierd, I know, but it does get the blood pressure back up. If it's higher, the extra fluid will help, somewhat. If it's normal, for him, have him drink a little more extra fluids. I guess the bottom line is now, have him drink extra fluids. There's always the watery
foods too, watermelon, jello, popsicles, etc.
I'm sorry, TW. It's just not a good day for me to hand out advcie. It's there, it's just in a fog right now.
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Oh Annie, I'm sorry to hear you're also having a bad day. Come and lie down. Let's just be in silence for awhile and feel the fresh air as it blows through the window. Ah, that's it.
Take care sweet one. We'll get back to the conversation when you're feeling more up to it. And by the way, your writing is not as foggy as you think.
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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TW,
There's an epidemic, apparently, of flu. I don't know how widespread it is in Canada, but it's
bad here in Indiana.
The one time I am so grateful we are required to have the flu shot.
From what I've heard and read, there's a terrible flu epidemic all over the US (except in Florida). It's a new strand, and the flu shots from last fall don't touch it. This past Monday when I took Marvin to get his staples out, our family physician told me to keep Marvin out of every crowd -- no public places (not even church). She told him, "Mr. Marvin, this flu is wicked, and it will take someone like you out of here." We have listened to her -- the only places he's been in the last week and a half are her office and the dialysis clinic (where, unfortunately, lots of the patients there have ... you guessed it ... the flu -- those that aren't in the hospital with it anyway).
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The flu is really bad here in Raleigh. Schools have classrooms have empty. Duke hospital isn't allowing extra visitors. My daughter, Melissa and her two are sick this week. Upper respiratory with high fevers. My sweet little Zeke, has had a fever of 103.5 and just keeps sleeping. We all had flu shots, but this is a different strain than what the shot was for. We usually spend time together on the week-ends, but everyone is staying at their homes until they get better.
Marvin, stay away from everyone!!
MissAnne, I hope you are having a better day. I've been thinking about you all day.
TW, how are you and LL doing today? Keep taking deep breaths of that fresh air and feel the calm. :cuddle;
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OK, somebody opened the vaccine issue so I must speak up... Do you know what's in a vaccine? Formaldehyde (used in embalming), thimerosal (50% mercury used for perserving), aluminum phosphate (toxic and cargenogenic) antibiotics, phenols (corresive to skin), live and killed viruses, monkey viruses, methanol (toxic), aluminum (nuerotoxic) and a host of other unknown substances that are unknown trade secrets. Each one has an adverse effect on children, elderly and immune compromised. However, they push the flu shot every year, and yet it never has the stand that it going around. And every year it gets worse and worse, but more and more people get the flu shot. ??
Even worse, a vaccination stimulates the wrong immune system. When you get a shot of vaccine, it stimulates a Th2 response, which is your emergency response where your body releases antibodies. This is why you have to get booster shots every few years. There is no permanant immunity. When you get the childhood sickeness, you stimulate the Th1 response, which is a cell response, and it lasts a lifetime.
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I'm really concerned about LL. I haven't seen him this exhausted in a long time. Sure he's tired all of the time, but now like now. He's spending most of the time in bed and says he doesn't have the energy to sit up for long. I don't know what it is and I don't know how he's going to go for blood tests on Monday and then to the hospital on Tuesday. It sucks not having a car to take him somewhere when he doesn't have the energy to catch the bus. I wish cab fare would fall from the sky or a ride would appear for both days. It would make it so much easier.
The way he's sleeping reminds me of when he was bedridden when he first became ill. That was hard on the both of us and I don't know how we pulled through. Especially him. Actually, I don't know how we pulled through a lot of stuff. But we did, and we will again.
The sun has set and the birds have all gone to sleep but my window is open and I'm taking deep breaths. I've said it before, and I'll say it again. To have this space and all of you to talk to, means so much. Paris, when you said, "Welcome home" on my intro, I cried. This journey has felt so isolating at times, I didn't realize how much I needed a space and people who really understand what it's like.
You are all so precious.
May safety from the flu surround all of you, and may a bird sing its beautiful song when you awake in the morning.
:grouphug;
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That's scary Traci. LL didn't have a flu shot this year but last year he had no other choice because he was doing hemo. My daughter tried to talk me into it but I refused. Now that you've shared what's in it, there's no way in hell I'll ever get a shot.
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I'm on hemo and I refuse it every year. They make me sign a waiver. Ha. Anyway, I am sorry to hear he is so weak. It must be hard to watch and not know what to do. My heart goes out to you tonight. I pray y'all get some sleep - without cramps!
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The way he's sleeping reminds me of when he was bedridden when he first became ill. That was hard on the both of us and I don't know how we pulled through. Especially him. Actually, I don't know how we pulled through a lot of stuff. But we did, and we will again.
Wife -- Through all of Marvin's years on dialysis, I have decided that he and I are the strongest people I know. I would have to expand that to include all ESRD, dialysis, and transplant folks in the "strongest" category. We have all been dealt some pretty tough hands...but, we are survivors. And, we will get through this. Keep your attitude up. Hope LL gets to feeling better.
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kidney4traci, you have expressed an issue which most people assumed that if the Dr's say its OK then most people don't question the effectiveness or the possible disastrous side effects.
Chuck had a kidney transplant less than 5 years ( from his daughter) and for 5 years I made him refuse to get the shot, then, we were in the Dr's office last year and they assured us that there was no live virus and convinced us to get the shot. Now I don't know if this is a coincidence or not but shortly after the flu shot his transplanted kidney began to reject which is why he is on PD today. He had not had any signs of rejection until that time.
If I had to do it over I would have continued to refuse the shot, but thats just me.
Thanks kidney4traci for this info.
Very enlightening!
Joannie
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TW
I am so concerned for the two of you. You have such a burden on your shoulders, a willing one,
of course, but I so wish I could be there, or nearby to take LL to the hospital for his testing
and clnics.
I think of you daily, and feel hlepless that I cannot DO anything for you All I can do is love both
of you as sister and brother, and hope that it turns out well for the two of you.
Love,
Annie
:grouphug; :grouphug; :grouphug; :grouphug;
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Joannie
I am sorry that happened to you. Unfortunately doctors offices around the country do and say the same thing. I believe the pharmacudical rep tells them what they want to hear. Like there is no mercury in shots anymore. But that's not true either. It was for awhile about 3 years ago when the topic came up. But since 2004 mercury has made a comeback when the CDC decided to refuse to give mercury free flu shots to infants and women. THe government's stand on this has allowed mercury to come back into other vaccines as well.
Better off not getting the shot in my opinion. And doctors are not always right. (Except my husband of course! But he's a chiropractor and he doesn't give shots)
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Joannie, I am so sorry to hear the flu shot caused your husband's kidney to reject. When they gave LL the flu shot last year, he caught the flu. Sometimes I wonder if the medical proffession really cares about their patients, or do they just do what they do to make money and support the pharmaceutical companies, which in turn, support them.
But here we all are, supporting each other, doing the best we can in our own homes. LL didn't cramp last night but he's not in good shape. He was moaning off and on through the night and I was jumping out of bed every couple of hours to check on him. He complained of stomach pain and had the chills. For awhile, I thought that maybe he's so weak because he's using all 1.5's but I'm thinking differently now.
I know he doesn't want to go the hospital and I don't blame him but something has to be done. He says he's going in on Tuesday but what if Tuesday is too late? Oh, the worry sometimes.
He's now up. We'll see how the day unfolds. When I told him my concerns, he said "it's just dialysis." I don't know about him but I'm certainly looking forward to Tuesday when his doc will see him. Do I worry too much?
Thank you Annie for your hugs and love, and to all of you. I don't feel so alone as we go through this.
Yes, we're all strong. We have to be.
:grouphug;
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TW, we were up last night as well with problems with fibrin in the tubing. I finally took him off the machine and just did a manual drain and called it a night. I saved the drain fluid just in case they want to check it for infection. He just got over a bout with peritonitis.
Have you checked LL's temperature? You know for possible signs of infection. With the stomach pains, it could be peritonitis. Not to get you nuts or anything but for Chuck, although he didn't have any stomach pain which could be because of his neuropathy all thru his body, usually stomach pain is a symptom. Chuck didn't have to go in the hospital for the treatment. I was able to do it at home. But, I wouldn't hesitate to get him there if the pain continues.
Chuck also is too weak to walk and has been for a little over a month, but try and get the PD nurse to understand that, is not easy. Was going to call the nurse put have decided to call the DR.
Hope all goes well for you and LL.
Keep us posted, and try to rest whenever you can. I know it's hard, but it is so important for you to stay healthy and strong.
Joannie
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LL had pain in his stomach last night and the chills. When I told him I need to take fluid to the hospital so they can check if it's an infection, he told me it was pain from filling. I placed my hand on his forehead last night and he was warm but today, he's picked up a little. He says he'll be fine while I pace around at night.
Do the symptoms of an infection come and go? He's been having a harder time during the past couple or so weeks, and last night wasn't the first time I thought about calling the ambulance. It's just so hard to know sometimes. Going to the hospital is not only a difficult task, it's a worry. There are so many germs going around. God, I hate this. The place to go to get helped is a place that can make things worse. The ole 'caught between a rock and a hard place.'
I'm doing okay...taking slow deep breaths when I need to and resting when I can. Sorry to hear you also had a bad night. Hope all goes well for you and Chuck, Joanie. All of us caregivers need to stay well.
I'll keep you posted and please do the same.
I think a few of us could use a hug today so here's a bunch for all of us...
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Wife and Joannie -- Bless your hearts, both of you! As a caregiver, too, I know what you're going through. Go with your gut feelings on what to do now -- I've found that mine are usually right. And, when the nurse or doc looks at me like I'm too overprotective of my Marvin, I just shoot back a "what would you do if this were your husband/wife?" look.
You two take care of yourselves, too. You're no good to your husbands unless you're in good shape. Thinking about you both. Worrying about you both. Praying for you both. Let us know. :grouphug; :grouphug; :grouphug; :grouphug;
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WT, our last conversation more than likely just saved Chuck's life.
Let me explain.
When I replied to you and suggested that maybe you should take L's temperature at the same time I told you that I was going to call the DR., because of the problems that we had last night.
So while waiting for the Dr. to call back I thought that I should take his BOP and his temp so that I can try and talk to the DR intelligently.
When I went to take his temp the first time ( he is upstairs sleeping ) I couldn't get him to wake up and the reading I did get I didn't think was really accurate.
So after a little I thought it's really important to take his temp so I went back up and it dawned on me that when I tried to take his BOP, his PK was soaked and his brow was full of perspiration I tried to get him to stay wake for the temp reading , which was normal. DUH, then I thought I'd better take his Blood Sugar and sure enough, he was headding for a coma. His reading was 37.
To make a long story short, I did the whole OJ/Soda/candy etc.etc and his last reading was 59, which is good because it is coming up. But It took forever . Slowly the numbers were 38/47/49 and finally 59.
The Dr. finally called back and just said to wait until tomorrow so they can do culture.
After the BS episode, everything else doesn't seem so terrible.
But I know what you mean about not wanting to be in the hospital and not having a lot of confidence in your loved one's treatment. I'm not really that informed about the symptoms of the infection other than stomach pain, temp and fibrin in the tubes or bags.
Maybe someone else can clarify.
Well, for now, I can her Chuck snoring away upstairs and when he does get up, I'll have to change the sheets, caused they are soaked and get him in the shower and back into dry PJ"S.
I might just do the same thing.
Thanks for the hugs and right back at cha. :grouphug; :-* :-* :-*
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I don't know why but a few of my abbreviations didn't come across so in case you are perplexed, a few corrections.
WT should be TW.
L's should be LL's
BOP should be BP ( Blood pressure)
PK should be PJ ( Pajama)
Guess I was a little kookoo
Joannie
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To the caregivers--a question? Do women caregivers "get it" better than the men caregivers? You are all so caring, full of worry, and spend your days doing what you can to make your spouses days easier. I feel I spend my days (as the one with kidney failure) caring for everyone else; cooking, cleaning, keeping up with every day tasks. There are days I don't even want to get out of my pajamas, but dinner needs to be made, bathrooms cleaned, floors scrubbed. Then when, everyone is at work, I collapse, hurting from head to toe- too tired to move. I know mine worries and he asks everyday how I feel. I would like to scream how I really feel, but know that doesn't help anyone.
It is so good to see the bond you all are forming here. And isn't it amazing how much you can care for someone you have never met? Sending you all peace and calm today and lots of hugs :grouphug; :grouphug; :grouphug;
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Paris, emotionally it sounds like you are were I was just a few weeks ago ( with Chucks peritonitis and his immobility, besides he is blind ) I was really a mess. But you've got the added burden of being the "sick" one.
Is there some way you can get someone in to help with the chores even once a week or every other week ? Maybe a teenager ?
I know that sometimes family, just doesn't get it!
How tired you are...how you just have had it with everything and everyone and how you need a little time for Paris.
Tell the family you need help.
Don't be so strong in front of them. It doesn't do you and your health any good.
I wish you some relief and soon!
We are all here for you only wish I can help you in person.
:grouphug; :grouphug; :grouphug;
Joannie
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TW, I am so sorry to hear about LL, I'm glad there is no cramping, sounds as if it's finally
gonna settle down with it. Unfortunately, yes, we do have our aches and pains. As Paris
says, we sit or lie down and just hurt all over. There are days I come home from work and
just lie down, it hurts so much. This thread has really helped me, not feel so alone as well,
TW, between all of us, we have a hand out to someone else, and others are helped because
of that.
Joannie, I am so glad Chuck is feeling better. That's a scary thing, but what a wonderful example
of how it all works together somehow!!
lAnnie
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Joannie, I got goosebumps reading that our conversation saved Chuck from going into a coma. I'm so glad you were able to turn things around. In regards to your codes, you're not kookoo, just a bit stressed. I do the same thing...make mistakes, then come back and edit.
And Paris, even though I'm sure there are men who are great caregivers, woman are known for their nurturing qualities. We give birth, we breastfeed, we care for our children and homes. I agree with Joannie. Speak up, don't do so much, let others know you need help. LL doesn't like to ask for my help but I always remind him that I need to know the details so that I can do the best I can for him.
Petey, Bless your soul. You know, we know, and we're all together.
Annie, I'm glad you don't feel so alone. It is good to come here, isn't it? And yes, us coming together all works together somehow.
Love to all of you,
Joie
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Paris, please, as TW says, ASK for help. I wish I could. I would love to hire someone, I tired
hiring my niece once, my sister ended up doing the work! I can only do so much housework AND
work 40 hours outside the house AND make sure my Dad is okay. Plus my two cats for some odd
reason DEMAND to be fed and watered. Heck, they even want a clean kitty box. The bums.
And now my girl is pregnant (cat). As TW says, women are nurterers. Doesn't matter if we're
sick or not, we worry and care for others.
Annie :cuddle; :cuddle;
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Sorry I keep butting in - I am not the caregiver but I tend to agree with you Paris. I think I am strong for one part - I have to be! Three kids one in high school and two in elementary and a husband who is running our own business, I don't have time to be sick. My kids do care, they are angels. My little boy and I were just singing on the hammock out back and snuggling. He brought me my tea and book to read. Such a doll! But my hat goes off to you ladies, it sounds like there is alot going on in your lives too. Your men must be very greatful. You are all Superwomen!
Joanie, I am glad Chuck is doing better! TW you too, glad LL is seeing the doctor this week. Petey, glad Marvin is stable now. Bless you all.
Paris, I recommend the help. I have a helper doing cleaning and laundry. It has helped me a great deal. Now if I could only afford someone to cook for me too...
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Oh Paris I do feel for you. I think that as women we are programmed to be the nurturing ones, but have you asked your family to help? They are probably so used to you doing it all that it just doesn't occur to them to offer to help. If they just did little things like running the vac round or making the beds it would be a start. It's hard to ask for help but they love you and I'm sure they will help you if they know how hard it is for you. We love you too, :grouphug; please try to take it a bit easier.
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As Marvin's caregiver, I always feel like I have to be the strong one. I'm still working, physically taking care of the house and the yard, paying the bills on time, feeding and loving the canine baby, maintaining the contact with Marvin's family and with my family, questioning the doctors and nurses, researching kidney disease and everything else that Marvin's going through right now, cooking all the meals, cleaning all the bathrooms, making all the beds, washing all the clothes, and worrying about Marvin every second of every minute of every day.
I have never been the type of woman who could ask for help -- even when I needed it. There are days when my body (and it's healthy) wants to stop, but somehow I keep going. There are days when my brain is tired and I don't think I have the emotional, mental, or spiritual strength to keep going -- but I always do.
Yes, as women, we tend to have an awful lot to do to keep our families going, but we also put a lot on ourselves. I have always believed that women were the stronger sex (don't mean to offend the guys here), and perhaps we were given the stronger urge to nurture and care for our loved ones because we're the ones who can handle it best.
So, ladies, what are we going to do? I can't speak for you, but I'll say this for me. I'm going to keep keeping on. I'm going to do the best I can (best I can -- I'm not living up to anyone else's standards or expectations right now). I'm going to be thankful for what I do have (and not regret what I don't have -- hey, to me, Marvin and all the high-maintenance that he requires is much better than the healthiest husband in the world and I wouldn't trade him for any other man). I'm going to do what I can today (prioritize my list of things I have to do) and put the rest off until tomorrow. I'm going to keep checking my mail box for that purple boa I've ordered...because a woman with a purple boa can do anything!!!
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I don't know how you ladies that aren't the caregivers do it. I really don't and I hope that all of you can get help.
This morning I thought LL was doing better but I was wrong. He was having a hard time staying awake and looks like hell. With all of this going on, there is good news. Two angels recently immigrated to Canada and moved into our building. We met a few months ago and instantly connected . A real sweetheart. Her and her husband. Anyway, when they asked how my hubby was doing, I told them he wasn't doing so great and I was glad he was going in for bloodwork and to the hospital to meet with the Kidney Care team on Tuesday. When the husband asked how he would get there, I told him by bus. Immediately, he told me to take his car, and that he would walk to work. And his wife said she would cancel her plans, "not to worry", and stay to let the Baxter delivery man into our apartment with LL's supplies while we go to the hospital.
When people like this step up, I bow my head in gratitude. Sometimes I don't know how I'm going to manage what has to be managed but the one thing I've learned is to let go and trust. Everything we need really does come when we need it. And angels really do appear.
Bless my neighbours and all of you.
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Wow, TW, That is awesome work of God on your behalf! How cool!
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Thank you sweet ladies for your replies. It seems like when I was first diagnosed, everyone rallied--friends, relatives, etc. Now, people have backed off---I jokingly say that I didn't die soon enough for some! My children are great--they have very busy lives of their own and help when they can. Of course, my sweet Beth is here right now, and she is quick to do things. It is hard to give up the role I have played my entire life. I love taking care of people. The day Susie died, I started cooking everything in the house; cakes, chili, soups--I needed to feed people to make them feel better. Instinct. It is so hard to accept help. I much prefer to give help. It has always been my identity. I have spent my life taking care of others. I hate being the one who needs help. This is becoming a rant---sorry. I do hope your husbands understand how much you are improving their situations. I also applaud you for being by their sides---many in your position have left. You are all heros.
What kind neighbors you have. There really are good people in our world. I am glad Tuesday will be easier now for you.
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Monday and Tuesday!
I have learned that giving and receiving go hand in hand. When we give, we allow the other person to receive. When we receive, we allow another to give. When I think of the word, give, I think, gift. When I give, it comes from my heart. If someone were to refuse my gift, they would be refusing the love attached to the gift. If someone refuses my gift, they would be asking me to close off my heart. If I refuse the gift of another, I am asking them to close their heart.
It took me years to realize this. In fact, I couldn’t accept help from anyone, nor could I ask. I still don’t ask for help. Yet, whatever is in my heart is heard, like a prayer, and I don’t even have to speak a word. Yet, I speak, by sharing or by answering questions asked by another. Or I speak in the silence of my breath. When I do, a solution arrives, a question is answered, and what I need the most arrives in unexpected ways.
The first thing I do each morning is give thanks. I give thanks for another day of breath, another day with my loved one, and for everything I have. I even give thanks for the challenges because without them, I wouldn’t have discovered how letting go and trusting brings what I need. By trusting, I allow life to unfold as it needs.
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TW, what angels!!! I am just thrilled you have them, that will be so much easerer on LL to get to
the hospital via car than by bus. Bless them!!!! Seriously, I am just trhilled!!!
I know what you ladies mean, about not asking for help. I can't. I have such a hard tme. I have NO
problem offering help, feeding people (LOVE to do that!), but I can't ask someone to take my trash
to the bin in the alley, to come to my house and move the boxes into my house (I work 40 hours
and am at work when they come). I AM working on it though.
Paris, you have a wonderful daughter there with Beth!!! Obviously she takes after you!!!
Ladies, I gotta go back to work.. fill is almost done. I just wanna commend you for being so strong
and nurturing.
I love you all!!
:grouphug; :grouphug; :grouphug;
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Oooo...was it ever nice to drive again. So much easier on LL too. They drew seven viles of blood today and tomorrow we'll both head to the hospital. It was more than they usually draw but this is a good sign. The nurse must have gotten ahold of the doc and they're checking whatever needs to be checked. Tomorrow we'll find out more. And yes, my neighbours are angels!
When someone asks me to help with something, I feel honoured that they feel comfortable asking me. There's a woman's group at the community centre and the leader hates cooking. Because she said something, I offered to do the cooking. I'm happy to do this and in turn she's grateful. All around, there is joy.
Because this group was larger than anticipated, I asked for help with the cooking. In turn, I was granted a cooking assistant that just happens to be a student social worker. It was great. She plans on working in the hospital once she gets her degree. While we cooked, I told her about some of the things we've had to deal with - the social workers that weren't helpful, and the ones that were. In the end, she thanked me because she was learning from my experiences. So you see, one person asks another, another receives what they need, this passes on to another, which in turn helps others.
If I hadn't had come here to ask for help in regards to LL, Joannie wouldn't have thought to take Chuck's temperature. As Annie says, somehow it all works together. Yep, giving and receiving go hand in hand.
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If I hadn't had come here to ask for help in regards to LL, Joannie wouldn't have thought to take Chuck's temperature. As Annie says, somehow it all works together. Yep, giving and receiving go hand in hand.
As we say here - what goes around comes around. Glad things are going in the right direction for you. :thumbup;
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TW, so glad to hear that you and LL had a good day.
About time yeah!
Hope that tomorrow is fruitful and that LL can soon get some relief. ( You too)
Have a great night!
Joannie
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TW, 7 vials? Dang!!! I'm really glad you had the car today! I agree, they must be finally taking this seriously. Let us know how it goes
tomorrow at clinic!
I so hope your evening is quiet and uneventful, and very peaceful. We need that, don't we? That sense of peace and relaxation.
:grouphug; :grouphug;
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Well, the doc is changing some meds, having him take in more fluids, and as far as the chills and the off and on fever, and extreme weakness, they don't know. By the time they took the bloodwork, he had his last episode of fever and chills, and nothing showed.
At least he slept well last night and isn't cramping.
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The sleep is GOOD! Apparently whatver he had (flu?) is gone. More fluid, eh?
Will he stay on 1.5 though? I was told to do another exchange, so I'm ding 5 on hte cycler,
which of course adds to the length of time. They upped it to 10,000 mls of fluid, two bags
worht.
Any word on the PTH? DId they have any ideas/suggestions for his cramping if it happens in the
furutre? Is that why the extra fluid?
And TW, you're doing a wonderful job taking care of him, now take care of YOU!!!
:grouphug; :grouphug; :grouphug;
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He'll stay on 1.5's and there was nothing said about what to do about the cramps, except to make sure he increases and keeps up the amount of fluid he drinks. So I guess it's fluid that will keep the cramps away. First they say, drink this much, then they say, no, drink this much. I can't keep up! One of the changes in meds was to double the iron. That should pick up his energy level. Or at least I'm hoping. In regards to the pth, they're FINALLYgoing to give him a new prescription to replace the other one that he couldn't take. What was that, two months ago?
Honestly, if I don't call and nag, call back and nag some more, nothing gets done. And still it seems to take forever for them to make changes. ARGH...
I'm in a bit of an agitated mood today. Guess it's from all the stress and finally having a day to deal with my emotions. Just change meds and drink more. Why didn't they try this two weeks ago? No, instead, they said to wait until yesterday's blood tests and today's meeting. Like he likes to suffer and I like to worry, plus get no sleep.
Growl....
The rest of the day is for me. Well, not really. Yesterday was LL's birthday and today I'm cooking a nice dinner for when his daughter comes over. Yesterday I cooked up a feast when his other daughter came over.
My neighbour poured a glass of wine into a jar and gave it to me to use in a recipe but surprise, there's an extra cup. I'm not much of a drinker but what the heck, every now and then I deserve a cocktail. It's probably a good thing I don't have a bottle because the mood I'm in would leave LL having to take care of me and a burnt dinner. :rofl;
Thanks MyssAnne for all of your concern. Now you go and take care of you while I pound back my drink.
:grouphug;
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Sounds like you are having some fun over LLs birthday at least, even though you had to cook.
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I ma glad to hear that it wasn't anything serious at least. And that he has such a good caretaker in you! Sorry you seem to have to fight for everything, but at least you take an interest. Wish him a belated happy birthday and hope you get some rest tonight yourself! :wine;
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We don't do anything exciting for birthdays, especially with LL's energy level, but I love cooking and doing fancy things. Having all those veggies really helped, plus all the other food I have in the freezer. It's always great to see his girls. I love them like they're my own and always have a great time just being together.
Now that we have the lastest blood test results, and the doc is changing and adding prescriptions, I feel the stress I didn't even realize I was holding move out of my body. One glass of wine kind of helps too. :rofl; But seriously, I'm exhausted and know I need some 'fun' time. Well, tomorrow I will have the best fun. I get to see my fifteen month old grandson and when we get together, all we do is play, play, play. Oh yeah, and laugh. That boy is my joy and if the weather is nice, we're going to go to the park. He's started walking not too long ago and is hilarious and oh so cute to watch. When he walks, he says, 'go, go, go...' And of course, his grandma, walks alongside him saying the same thing. Ah, bless his little heart. All I have to do is think of him and my heart warms.
Thank You Everyone. You've all been such a great help.
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TW!!!!
Amd no pictures??? ANd you call youself a grandma??? Shame!!!! You cannot promise a baby and not have pictures!!!!!
You have a DUTY, no, a responsiblity to give us upates, and pictures!!!!
Now, enjoy your evening, feel the stress leave your body (wine always helps!!) :wine; :wine;
and rest up for tomorrow's go go go baby!!
:grouphug; :grouphug; :grouphug;
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Oh...pictures? I don't know how to post. If someone can help me, I'll post one but you have to promise not to steal him. He's soooooooo cute! He's got big blue eys, and well, really fine hair that just started to grow. But the laugh and smile, and the hugs he gives, not to mention some of the other things he does. One day, when I went to leave, he wanted to hug me. So, I did what most grandma's would do. Picked him up and let him wrap his little arms around me. Everytime I tried to give him back to my daughter, he hung on harder. It was precious. He ended up hugging me for ten minutes! But then again, I played with him for five hours that day. Well, almost five. We had lunch and a snack.
He was born shortly after LL started dialysis. In fact, we was overdue by ten days. What an amazing time that was, life being extended for LL, a new life coming into the world, a new place to live, etc. We finally moved into our apartment but had problems with the phone line for a week. Once it was hooked up, he arrived in this world. I always tell everyone he was waiting for his grandma to get everything in order.
Can you tell I adore him?
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I sure can!!!
I can't wait for my son to get married and have grandkis! Of course he's only 19 right now....
I love babies, my mama cat is pregnant, and I am just trhilled!!!
Wha a wonderful experience, to have him come at such a time, he sounds so spiceal.
Give him a hug from me, and extra kisses!! I loove that fresh baby smell too!!!
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TW, I am so glad that things worked out for you and LL today and hopefully he will be feeling better soon and you can relax a bit.
Wishing LL a belated birthday wish and hope that you and your family enjoyed the birthday dinner.
Have a great night!
Joannie
PS... How did the recipe turn out with one less cup of wine?
Cheers :wine;
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Oh I love that age! Too young for grandkids, but I always grab em and hug them at the office! Have a great day and I am sure he will be the tonic you need! :)
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I'm not old enough to be a grandma either but here I am, miss gramma. The go go go baby was a bit low on energy himself yesterday but we still played. Just not as hard. That was okay though because I was tired. One thing that is great with children at this age is you can do simple things and still get them to laugh. The sound of a young child's laughter is beautiful medicine. And books. A gentle time together, reading, pointing to our nose, or teeth, or toes.
The time spent with LL's kids was also gentle. With a good meal to eat on both nights and sitcoms to watch on TV, our night resembled that of a normal family. Just hanging out, being together, and quietly celebrating, what LL calls, another year around the sun.
The recipe with the wine was great. The wine I drank wasn't taken from the recipe. Nope, there was one extra cup. Lucky me.
I do feel lucky. Kids and a grandkid, a partner who has once again pulled through a difficult period, and nurses who heard me and took my concerns to the doctor. An x-ray, an EKG, changes in meds, and a new day with robins singing outside my window.
Yes, it's another day and it looks like it's going to be a beautiful one.
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May all your coming days be beautiful ones too. :grouphug;
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You have the greatest attitude, TW. You're a tiger when things are going wrong, but so ready to open up and enjoy the good times to the fullest. Your neighbours are great too -- how did they know you needed 2 cups?
I have a four year old niece who is just the light of my life, but she lives 8 hours and 3 ferry-rides away, so I don't get to see her nearly enough. Last year one of my neighbours' kids basically adopted me as her auntie and now I look after her one afternoon a week. I still miss my niece, but it's lovely to have that sweet, exhausting kid energy in my life.
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I have a tigger coffee mug that I purchased at Disneyland when LL's younger daughter was four. Brings back memories of all of us riding scary rides, then deciding to split it up a bit when the younger child was too scared to go on the roller coaster. How many times can you ride It's A Small World? Well, that's easy to answer. As many times as the other two want to ride the roller coaster. Not a problem. Happy to oblige. Happy to not have to get on a ride you know is going to scare the beegeesus out of you. Good thing there's a small sensitive one around.
And good thing my sensitive self roared when the guy at Subway tried to squeeze oil on top of my sandwich. "Whoa, what's that?" I asked. "Are you serious? NO, I don't want oil!"
Oil, wine...how did my neighbour know a glass of wine would be appreciated? And the car? When I told her I wanted to make her something, she placed her hand on my shoulder. "No obligation," she said with a smile. Ah yes, I heard those same words coming from my mouth when I helped her with her English. Okay, I will accept without feeling the need to return your generosity. But I will return it, not out of obligation, but rather, out of appreciation. Giving, not to give back, but to give joy.
Ahhh, memories - scary times, happy times, roller coaster rides, and the moment when you see tigger on a cup, and you just have to have it.
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TW,
what a wonderful week it has been for you!! Babies, family, friends, acknowledgement, and the hope of another year for your loved ones.
:grouphug; :grouphug; :grouphug;
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You guys had to go and mention, "It's a Small World". I won't get that tune out of my head for days now. :rofl;
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Hubby's energy is better now that they've doubled the iron but he still gets the leg cramps. They don't seem to come as often but they still hit. What can you do?
After those few exhausting weeks in February, I became completely drained myself. It just hit me. And hit me hard. For days I just couldn't seem to move and so I cancelled everything off my plate, took care of what had to be done, and rested.
Sometimes I just need to sit in silence, or stare at the ceiling and breathe. And sometimes I just need a friend. When my daughter called and told me she was cancelling her plans, I knew it was the perfect answer. Her stomach was bothering her, and I was ready to step out into the world again.
"Do you want to come over and just hang out?" she asked.
"You bet and I'm bringing the ingredients to make grandma's apple crisp."
It was the best few hours I've had in awhile. My grandson's got the walking thing down pretty good. Walking and laughing. Back and forth. "Boo!" Touching us with pure joy, laughter, and innocence.
Once he wore himself out a bit, my daughter read about the different programs she found in the community guide as I laid on the floor. Of course, this called for my grandson to sit on my stomach, jump up and down and say, "nay, nay." Does he really think I'm a horse?
"What's for lunch?" I asked as I got up to check on the crisp.
"Apple crisp," she replied. "What else do we need?"
She was right. It really was all we needed but just as I was ready to pull out the bowls for the crisp with peanut butter in the topping, she remembered the soup she made the day before.
"You have to taste this. It's the best tomatoe soup I've ever had. I found the recipe on the internet."
She was right again. OH MY GOD, it was good, the best I've ever tasted. I don't know how many times we both said how good it was. We said it so many times we started laughing. And then we had the crisp.
Things can get pretty rough sometimes but when there is a daughter, a grandson, the most amazing tomatoe soup you've ever tasted, and grandma's apple crisp, you know that no matter what happens, everything is going to be okay.
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You are so right, TW.
I'm so glad you had a wonderful day with your daughter and grandson!!! He sounds so adorable!!!
I'm glad LL is feeling better, but the cramping is still going on? dagnabbit.
As you say, breathe....just breathe...
:cuddle; :cuddle;
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My grandson is adorable. Melts my heart.
Yep, the cramping continues. He had another bad night last night. Another thing I'm wondering about is blood pressure. Do you know why his blood pressure is always high in the morning? Sometimes it's high at night too but the mornings seem to be the worst.
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I know you are The Wife...but the little girl in me wants you to be My Mommy.
Your words will see me through.
Thank you!
A.
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Hm. No. I can't think of why he'd have high blood pressure in the morning only, maybe someone else can chime in?
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Ahhh...Annabanana....
For the first while, I couldn't get away from thinking about death. I was always thinking about it, worried about it, scared to wake up and find my partner no longer breathing....but then I realized I was focusing on a future event that has not happened. Changing my focus, I started to see life, and to be grateful for another day. I started to focus on the robin that sings outside my window every morning and the laughter of my grandson. When fear grasped my heart, I would pull out a pen and piece of paper and start writing one-hundred things I was grateful for...and you know what, it helped turn my feelings around.
I still get afraid sometimes, especially when there is a crisis period, but by reminding myself to breathe, I find my centre and remember the moment I am in, instead of the moment that is not here. Find that which brings you joy and in the darkest moments, when fear grasps at your heart, bring that to your attention.
Today, no matter what condition your husband is in, is another day of life. Today the sun is shining, even if it's above the clouds, and today, you have the opportunity to share love once again. :grouphug;
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Thank you!
I have found that "little" things have become very very big...
Every aspect of life.
I'm just learning to grab hold of these life-lines.
It's very surreal.
A.
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You're welcome. It does feel surreal for the first while, and sometimes, after the first while. Another thing I've learned to do for myself is to have compassion, to embrace and honour all of my emotions...and then to let them go. I've learned that if I deny my feelings, they create anxiety but when I accept them, I can then let them go. Think of your emotions like a child that has hurt themself. They come up to you and when you give them a hug, they run away and are happy to play again.
You're not alone Anna.
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Hm. No. I can't think of why he'd have high blood pressure in the morning only, maybe someone else can chime in?
It gets high at night too but it seems to always be high in the morning. Even though you don't know, thanks MyssAnne. Hope you're having a good day.
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Thank you TW! It was a draggy day for me, BUT!! I went to work and stuck it out. For me, that's
an accomplishment, and I am planning on working ALL week!!!
I took blood pressure medications until I started staying in the low 100's. About all I did was make
sure I was draining enough. They also have me doing 5 exchanges now, 10,000MLS a day. That
helps as welll.
LL doesn't need that much right now, I don't think, not with all the cramping going on!! If he isn't on
any medication (which could be why, because of OTHER mediciation?), you might see if there is something
VERY mild he can take.
Good luck!!
OH!! THe sun is out!!!!
:cuddle; :cuddle; :cuddle; :cuddle; :2thumbsup; :2thumbsup; :2thumbsup;
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Contrats on working all day MyssAnne. Let's hope for a great week for you.
LL is on blood pressure meds and heart pills. I guess all we can do is keep learning, adjusting, and doing the best we can.
The sun is shining here too. This morning, I noticed daffodils swaying in the breeze and yesterday on my walk, the cherry blossums on the Japanese Maples were lining the street.
Yippee, spring is here!
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Spring is here as well. I spent this morning raking up tree-trash that the winter storms blew down. Now I'm exhausted but happy, looking out on apple and plum trees and the big horse chestnut, all bursting with buds. No blossoms up here yet, but I'm borrowing the smell of cherry blooms from your walk.
I so hope someone can figure out what's happening with LL's cramping -- either that or it just mysteriously stops. In the meantime, here's to daffodils!
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Tulips, cherry blossums, flowers popping out all over the place. Now we just need some sun and the weather to warm up a bit. I am craving a warm ground to lie on.
LL still cramps on and his legs are a mess...
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It was nice this weekend here in Indiana, now it's not so nice. Oh well. It was nice while it lasted!
I'm ready for Spring. and Summer!
TW, does LL keep his legs warm, when doing the cycler? That might help. I'm really grasping
here, trying to come up with SOMETHING!!!
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The weather is weird. I think it was warmer in Februrary. Oh well, soon it REALLY will be spring. At least it's not windy today and the sun is trying to burst through the clouds. Our winters are rainy and windy, and when there's no rain, it's always cloudy. After awhile, it gets to you but at least we don't have to deal with snow or really cold weather like the rest of Canada gets.
LL keeps his legs warm...and everytime I say he didn't cramp at night, he seems to start cramping again the following night. It really is an on and off thing but as you know, it's hell and you hurt the following day. And then there's the body, hip or toe pain. Gout? It seems there's always something and I guess all we can do is do the best we can. Oh, and you know what his doc said about the quinine that he's no longer taking? He said it's just a placebo anyway. Can you believe this? Why in the world would they prescribe something that is toxic when it's just a placebo?
How are you MyssAnne?
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Tired. Turns out I have an infection somewhere in my body. They've taken blood, pee, and a chest x-ray to see where it is, so they can treat it. It's NOT peritonitis, I KNOW that one.
I did get out Saturday (I saw my sweetie this weekend!!!!), then Sunday we had a viewing to go to, a dear friend's father died Thursday.
I drove back to Muncie this morning so I could do my clinic. That's when my neph said, your white blood count is EXTREMELY high, we're taking some tests!!!
And I am here at work til 6 tonight, to get in some of my hours. It's been a long day.
As for LL WHY the dickens would they give him a placebo???? What a waste!!!! Stupid neph.
I just feel bad, that I can't help with his cramping. I so wish I could come up with an answer for
him. Darn it.
As you say, Spring is coming!!!!! YAY!!!!!
:cuddle; :cuddle;
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Sorry about LL's legs still cramping, wish there was a remedy. Obviously not a toxic brew nor placedbo bs. Still looking for a holistic phos binder, has led me to some interesting chinese medicines though. The weather here is 80 today, but windy still. Going to San Antonio tomorrow for a few days... see ya when I return.
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MyssAnne - Oh dear, I hope they find out what's going on with you. At least you know it's not peritonitis. Take care of yourself and don't work too hard! I honestly don't know how you do it.
Yeah, placebo. I'm beginning to understand more and more why he doesn't like to take his concerns to them. He says they don't know what to do and I think they should figure it out. I'm beginning to think that maybe LL is right. In the beginning of all of this, they did say he had a complicated case...
80 degrees in the sun?! Oh Traci, I could use some of that warmth. Not meaning to complain, but my sciatica is not being nice to me. Once it warms up and the sun shines, I'll feel better. What a whiner, geez, I'd never survive dialysis. Have a great trip.
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Spring brings mixed emotions. Flowers, warm weather, sunny skis. And three years of having an ill spouse who can no longer take part in the things we used to do. Anger sometimes comes up, as does sadness, and no matter how I try to turn the unpleasant emotions away, they rise from within until I acknowledge how deeply his illness has affected me.
We used to walk a lot together, miles in fact. We'd do tai chi in the park, play music on the beach, climb rocks, hike, and stop to grab a coffee on the walk back home. We'd stop for a slice of pizza, stroll through the second hand book stores, or check out flowering yards. We'd walk just to walk.
And now he stays inside. Inside where legs continue to cramp and pain or lack of energy keep him from having a life outside of this apartment.
Sometimes I want to cry. Especially when my friends tell me they're going on a trip, hiking up a mountain or for a long walk around the neighbourhood. Or they're going for dinner, to a movie, or through one of our parks to watch the changing season.
Our season seems to be stuck. It never goes anywhere except from one storm to another. Sure, sometimes, the wind subsides and we can catch our breath but it's still the same season.
Sometimes I wonder why we have this rotten thing called kidney disease in our lives and sometimes I have to remind myself not to let self-pity pull me into a hole. "Focus," I tell myself. "Focus on what is good."
I focus on the tree outside my window and remember the sixty-four acres of park we had our ceremony in, the flowers, the bridges, the day I made a strange sound and my partner rolled on the ground in laughter as a duck stretched out its neck to see what kind of animal I was. I remember the disappointment I felt last year when he couldn't make it to the park, not even once, because he didn't have the energy.
But this spring is going to be different. I'm going to bow my head in gratitude for the neighbours that want to give me a key to their car so that I can use it whenever they're not. This year, I am going to take my partner to the park.
I'm going to make the most awesome picnic, pack up his drum and my guitar. I'm going to find a perfect blanket to place on the grass and load my camera with film. We're going to watch the turtles as they sun themselves at the edge of the ponds, talk to the herons, and say hello to the elders who walk past us on the path. The sun is going to shine, the variety of flowers are going to be the most incredible sight we've seen together in a long time and maybe, just maybe, the duck that somehow turned into a cartoon character those few years back will stretch out its neck and say, "Welcome to the park. We've missed you."
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No daffidols or tulips or any type of plants yet for a while. Still at least 4 feet of snow on the ground and another blizzard warning for tonight and tomorrow!!! At least another 25 -30 cm of snow. That's about a foot. High winds forecasted with that!! Would love to see my flowers coming out in bloom right now. Be at least another 2 months. Was -28 celcius here this morning. About -12 now BRRRRR With the wind chill it feels a lot colder. Id like to turn into a bear and hibernate!!! :sir ken; to the snow!!!!
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The wife, take advantage of the car keys offer and you and your hubby go to the park and enjoy your selves as many times as you can!!! It will really lif your spirits and hubby's too. We all have special things we love to do with our spouses!!!
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Oh, TW. Sciatica is PAINFUL. So whine. You have every right to!!
I agree, though sunshine will really help, I am so anxious for the first full week of good weather,
I know I will feel better!!! Taking LL to the park will help HIS spirits too. There's something about
being outside in good weather, no schedules, no pressures, it's so therapeutic!!!
I'm sitting here on my bed, with my baby mama cat, she's pregnant, and so anxiious, and wants to be
where I am!! I named her after Agatha Christie, and call her Aggie for short.
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No daffodils or tulips or any type of plants yet for a while. Still at least 4 feet of snow on the ground and another blizzard warning for tonight and tomorrow!!! At least another 25 -30 cm of snow. That's about a foot. High winds forecasted with that!! Would love to see my flowers coming out in bloom right now. Be at least another 2 months. Was -28 celcius here this morning. About -12 now BRRRRR With the wind chill it feels a lot colder. Id like to turn into a bear and hibernate!!! :sir ken; to the snow!!!!
Oh man, that hurts. -28C? Jeez. Are you in the prairies? I remember when I went to visit my sister and we sat in her hot tub. I thought she was crazy for even asking but as it turned out, so was I. It was February and -44C. My eyelashes and eyebrows turned white and had ice hanging off of them, and when I stepped out of the hot tub, my feet stuck like your tongue sticks to a pole. (Did that once too.)
I don't think I've even seen snow this year. Oh wait, one little dusting that lasted for an hour. Still, it can get pretty cool with the wind whipping off the water. But it ain't no -28C, that's for sure. If it got that cold here, I'd be doing this :sir ken; too, but with long johns that have a back flap. Hey, you know, you could try to melt some of that snow by lifting the flap and aiming your :sir ken; at the highest snowbank. :rofl; Sorry. I couldn't help myself but I could certainly help melt some of that snow for you. Okay, I'd better change things here or I'll never be allowed on IHD again. Some might be offended by my unladylike behaviour. Don't know why. Gas is a pretty natural thing.
Speaking of gas. We don't really have extra money for such a thing but I'll pull from our food money and take the two of us to the park at least once. I also don't want to take advantage of the extremely kind and generous offer but oh, just to do this once would be such a gift for the two of us.
And MyssAnne - Let us know when you become a kitty gramma. :2thumbsup; Give Aggie a nice pat from me.
Hugs...
ps. I have now fallen in love with an icon. He reminds me of daffodils and I can't help but make a chorus line.
:sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :sir ken;
:mysty:
Yehaa!
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TW you sound punchy - I do love to read your writings! Wish I had words of wisdom, but pray the sun will come out tomorrow. Be well! (When you think of the music to go with that chorus line I wanna hear it!!!)
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I'm not in the praires but I am in Canada. Newfoundland - the most eastern province!!! I really like that icon too :sir ken; and I like your joke about gas. Wish that would work I'd be outside all day :sir ken; - make sure I ate gassy food first - like beans!!! :rofl; :rofl; Now I'm being unladylike!! Who cares :rofl;
It is awful here today, high winds, snow, drifting. lots of snow down already and still lots more to come. I am sooo sick of it!!! :rant; :rant;
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LOL!!! TW and Del, you ladies are FUNNY!!!!! I know what you mean about winter and cold though. :sir ken; :sir ken; :sir ken;
Spring IS coming though!!! I'm hanging on to that thought!!!!
And I agree, I really enjoy reading your postings TW, you are so perceptive, and so thoughtful. I always think, after I read your posts,
which is good for your brain cells, after all!!!
:big hug: :big hug:
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:guitar:
Here's to all the ladies
we're gonna rip em down
we're gonna shake em at the moon
then shake em at the ground
Here's to all the ladies
when you're hurtin'
or you're blue
we're gonna shake shake shake em
and bring the sun to you
Here's to all the ladies
from the east coast to the west
to all the ladies in between
across the border too
here's to all the ladies
shakin' just for you
:bandance;:sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :sir ken; :bandance;
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Most of the time I just speak about Jenna, but your comments The Wife made me think about my hubby. He was injured in a skiing accident 10 years ago and hurt his back. After several surgeries the docs have done all they can, and he is still in terrible pain. Add to this that he has gotten migraines since he was a teenager, and that really knocks him out too. For the first 20 years we were together he played tennis, skiied, played beach volleyball and windsurfed. He had to give all that up. Often he doesn't go anywhere for days. He minimizes his activity so he doesn't have to take narcotics for the pain. I had a hard time accepting that this was the way it had to be. Then Jenna got sick and I put my energy into helping her. I know he suffers and I wish things could be different, but it's been a tough few years. We are lucky he worked hard before he had to quit, so we have been ok financially, but the stress of not being able to do things for our kids really gets him down sometimes. I try to be upbeat, life carries on and I don't want to spend my days feeling sad. However, sometimes it just kicks my ass and I feel lonely and scared with all the responsibility. But today the sun is shining and I feel good, Jenna is healthy, I have great friends, and the future looks good!
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I feel for your hubby Okarol. And for you. I had a spinal fusion in 1990 and have experienced pain pretty much every day since then. As I get older, it gets worse but I carry on and do what I have to do. Sometimes I wish I had a wife. I don't like to take anything for the pain unless I'm at the point where I can no longer stand it. I think I've just gotten used to it or found other ways to cope - like acting silly.
Joy has a way of making things easier. When we can find laughter, it becomes a pleasure just to be alive.
:big hug:
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I have had a few years here too with Victor and his injury, so I now how you all feel. It is funny how we learned to lean on each other through the crisis life brings you.
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kitkatz, you are so right about a crisis bringing people together, leaning on each other.
I've been thinking about the concept of "understanding" --- that it might be close to #1 when in crisis.
Before Karol told me about this website I was a mess. Lost, really. This site is many things, but mostly a beautiful group of people who UNDERSTAND,
which somehow makes all the difference in the world.
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One of the things I have learned through all the different challenges in my life is that we get what we need to help us through. When I had my back surgery, I was a single mom. I had just become friends with my daughter's friend's mother. She invited me to live with her during my surgery and recovery period. I don't know how I would have managed otherwise.
My life has had many twists, turns, and unexpected storms, and when I look back, I don't remember the pain. Instead, I remember the kind and caring hearts that came into my life exactly when I needed them.
Sometimes, we think we are alone, but if just turn our head a little, we will see that someone who understands is right there beside us, holding out a hand.
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I'm not in the praires but I am in Canada. Newfoundland - the most eastern province!!! I really like that icon too :sir ken; and I like your joke about gas. Wish that would work I'd be outside all day :sir ken; - make sure I ate gassy food first - like beans!!! :rofl; :rofl; Now I'm being unladylike!! Who cares :rofl;
It is awful here today, high winds, snow, drifting. lots of snow down already and still lots more to come. I am sooo sick of it!!! :rant; :rant;
Hey del - are you thawing out yet? :waving;
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Where are The Wife and LL?
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I would really like to know where they are, too.
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Before LL started dialysis, I believed he would get better. After he started dialysis, I did everything I could to learn about all of this so I could make him feel better. Or at least try to give him a bit of a better life.
I can cook. I can make meals that taste good, that keep his potassium and all those other levels in check but I can't do a thing to change the constant pain, the lack of energy, the loss of his 'manhood', the one thing after another and all that goes with dialysis.
When LL goes to the monthly clinic meeting at the hospital and his neph say things like "I'm busy. Let's hurry up and get this over," instead of listening to the fact that his patient is suffering in pain on a DAILY basis and is getting worse, I want to scream. When LL gets nose bleeds and he just can't seem to get his blood pressure down even though the doc has told him to increase the amount of pills the doc prescribed, and the doc says, "I'll see you in two weeks at our scheduled clinic date"....
You become silent.
But you're not.
What you are is
PISSED OFF
But speaking out doesn't do a thing. They still won't give you an answer on "what's happened with the Hep C since you've stopped treating it?" and you begin to wonder what they're covering up.
You feel a rage move through you and you know you need to step back and breathe or you're going to get a really bad reputation after you blast them and then they'll never answer even the smallest question again.
And so you crawl into bed and wish you would wake up from this dream.
You wish you could change this dream.
You wish you could just sit down with the medical team and get a few straight answers without them fearing that they're going to be sued, or fearing that they'll have to admit they made a mistake, or that, god help them, they might have to admit they really don't know what to do for certain things.
But you can't.
And you're tired.
You're tired of feeling that nobody really cares anyway. That LL is probably right when he says that they only say what they have to say to cover their ass. That it's just their job while it's his life, your life, the life you can't close after 4 PM.
And then you decide it's time to talk to those who truly understand what it's like. When you turn on the computer you notice that a couple of people have asked about you.
Thanks for caring. :grouphug;
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:cuddle; The Wife I was glad to see your post even if you sounded down. You have been through so much and sometimes you can't be silent when your loved one is going through everything he is going through. I had a terrible fit at clinic onetime and when the doctor and nurse came in, I stood in front of the door so they couldn't leave and let them have it with both barrels. I told them they weren't leaving the room until they answered all my questions (which I had a very long list), I reminded them that we live 27/7 with everything and we deserved the truth from them and were being paid well for what they were doing. They both said down and almost 2 hours later had answered lmost of my never ending list. You are LL's advocate and have every right to expect to be kept up to date on his health. Your in my thoughts and prayers and we are always here for you. :grouphug;
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I care too.
Sometimes it's too hard to come here because everyone is suffering. I want to hug all of you and bring a smile to your face.
Instead, I cry for you. When I feel myself pulled into the sorrow, I have to step back. I need to observe the flowers, the formations of the clouds in the sky, the buds forming on the branches. I need to inhale peace for when I do, I can exhale it back to you.
In this breath...
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Thank you for sharing with us again The Wife.
I have missed you and always looked forward to reading what you wrote.
You have the neatest, most awesome way of expressing yourself.
We do care.
We have missed LL's contributions to the site also.
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If I could, I would lie on a warm piece of grass under a large tree. The branches would be full with beautiful soft leaves. They would caress my skin and whisper words that comfort me. They would tell me that it's okay to admit that I am tired, that it's okay to cry. The birds would jump off the branch and place a seed into my hand. They would sing the most glorious song and I would listen.
Under this glorious tree, I hear a story. It's a story of all who live with disease. It's about those who stay alive by the use of machines, and those who care for them. There are sad parts and parts that make one angry. But the part that stands out the most is the part that speaks of love.
Thank you.
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Thanks for your poetic contributions, they are lovely. You know how you get pulled into the pain and sadness that is of course a part of this site? Well I find myself pulled too by the lack of answers to your questions about LL's situation. I want you to know that I would personally love to come with you to LL's next clinic appointment and read the Royal Riot Act to your neph or whoever can't find the time that you need. I clapped at willieandwinnie's post. Maybe the social worker on LL's team is also next to useless but his/her job is to advocate on your behalf if necessary so that you both can find some peace of mind even if actual solutions are elusive. The SW ought to be able to pry out a few answers and should be able to convey your worry to the team.
Please don't give up on asking your questions. Crazy as it is, we have to teach these medical people how we need to be treated even if downright hissy fits are involved.
Peace back at you, caring person, and now that the weather is getting nicer I'll think of you on the warm grass under that understanding tree.
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Wife --
I know exactly where you are because I'm there, too. There are many of us who feel the same things you're feeling. I wish I could say something that would make it better -- or easier -- for you, but I don't know what that is; if I knew what to say to make it better, I'd tell myself, too.
I get so frustrated with doctors and nurses who see my Marvin, his health, and his medical problems as simply their job. They cover their asses a lot -- and they cover each other's asses, too. They make it obvious that they work from 9 to 5 and don't won't to be bothered if Marvin's problem doesn't happen during their "working" hours. They do things that you know are only so they can charge Marvin's insurance for. They don't want to answer your questions because YOU'RE not the doctor/nurse here -- you're only a patient's wife and just what the hell do you think you know anyway? They see my Marvin (the most precious human being in the world to me) as a body -- a sick and wounded body in a dialysis chair, in a hospital bed, on an operating table, and THAT TOTALLY INFURIATES ME. He's a man, he's a human being, he's the most wonderful person I know -- he's not just a "body." When they don't know something, they will make up some totally unbelievable BS that you know that they know that they are making it up. They do sometimes avoid me, and I know they call me a b*tch behind my back. You can see it in their eyes; they get that "Oh, God, let me look busy so she won't come over here and ask me something" look or that "How does that man live with her?" look or that "I don't care what she asks, I'm going to give her either no answer or one that is so evasive she'll never ask again" look. And, the more you ask, the more you question, the more you insist, then they label you a "troublemaker" and don't want to cooperate with you anymore at all.
Yep, this is frustrated me. This is a part of my role as a caregiver.
I get so tired. My brain is tired, and my body is weary. The stress is unreal. I worry about Marvin, his life, his treatments, his meds, his doctors' appointments, his emotional well-being. I worry about paying the bills and keeping the house running. I worry about keeping my job and my insurance (which also covers Marvin). I worry about the cars (old and wearing out quickly). I worry about what I'll do if the washing machine dies or the hot water heater goes out. I worry about what's going to happen to me when Marvin's gone. I worry what will happen to Marvin if I go first. I worry about the dog. I worry about worrying so much.
Yep, this is tired me. This is a part of my role as a caregiver.
There are days when I simply want to go to bed in the middle of the day, shut my eyes, face the wall, and pray it all goes away. There are mornings when I don't want to get up from the bed. There are days when I scream at the top of my lungs, "Why Marvin? Why me? When is it going to end?" There are days when I cry like my heart is breaking because it really is. There are days when I feel like there's nothing I can do to stop Marvin from hurting, from suffering, from dying, and I feel so useless. Luckily, these days are -- for me -- few and far between.
Yep, this is useless me. And, this, too, is a part of my role as a caregiver.
If there's one thing I've discovered in the last 13 years, it's that it never gets easier -- only easier to bear. It never ends, and we must stay at it. There are no short-cuts. There are no magic wands. There's nothing -- not a damn thing -- about this disease that's fair. But, this is Marvin's disease, and this is the hand he was dealt. There's nothing he -- or I -- can do to change that. The best that we can do is claim it and not let it defeat us, at least not today.
In all the years when Marvin was on in-center hemo, we met lots and lots of dialysis patients -- but very few spouses. I know an awful lot about ESRD, dialysis, transplantation, etc. because I have lived it right along with Marvin (my choice). Believe it or not, there are many, many people who have to face this disease alone. Marvin feels very lucky to have me in his life, and he tells me this often; however, I'm the lucky one because I've done something to make another human being's life easier, better, happier, and, in doing so, I have enriched my own life and fulfilled my purpose. That is a feeling that many spouses never have.
Yep, I'm lucky that I'm a caregiver, too.
I'm a fighter, and I will continue to demand that Marvin gets what he wants, needs, and deserves. I don't care if his doctors and nurses call me a b*tch -- there are worse things they could call me (like "unconcerned, uninterested, absent"). Besides, I'm not doing this for them; I'm doing it for Marvin, and he is all that matters. I will get up in the morning because he needs me, and wants me, and loves me. I will laugh at his jokes (even the ones that aren't funny). I will hold his hand. I will be there. I will do the best I can with what I have to work with. And, when it gets tough, I will dig deep down inside of my very soul for the strength to go on doing what I'm doing...because, that's a part of being a caregiver, too.
In my mind, right now I'm going to put my arms around you :grouphug; and I'm going to say, "Hang in there! We're all with you and we care about you and need you here to help us, too."
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No fair Petey. You made me cry :'(. Good. Probably getting rid of some stress toxins. I'm hugging both you and The wife right now. Two very special women.
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People here understand and care for each other.
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You're right this is a disease that never ends and you never know what tomorrow is going to bring. We try to live one day at a time and treasure every moment. Hubby's dialysis nurse and neph will answer our questions. he would be the one to kick up "hell" if they didn't!!
Weare thawing out here in Newfoundland. Daffidols and crocus are poking through the ground. A lot of the snow has melted thank God!!! :bandance;
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Wow! Sounds like there's a bunch of kick ass women here. Looks like I'm in the right place afterall.
So... I'm sitting here with the purple boa wrapped around my neck as I share a bit more.
We had to go see an investigator last week in regards to the disability that comes in monthly. Apparently, the government has changed things and needed everyone to reapply. They were also missing a couple of pieces of ID from us. Two each just isn't enough. Okay, we'll do what we have to do. Not a problem, except for the fact that he didn't believe we didn't have a penny to pay for them and won't have until payday. We're always completely broke before we get paid again. The guy at the ministry asked me three times. "Oh surely, you must have some money? I'll bet if you checked your pockets, you'd find some."
Already done, several times over, every month, same thing.
Maybe if he looked at my shoes, he'd believe me. We live far below the poverty level and every cent after our rent and utilities goes to food. Every month is the same and every month there's never enough money for our needs. As we all know, there are special diet requirements for someone on PD and food isn't cheap. I've stopped eating certain things so that LL has everything he needs. Protein, especially when you're not supposed to eat lentils or beans, is expensive. Anyway, the fact that he didn't believe me pissed me off. But what really got both myself and LL is that he then made us sign a form that stated we had 90 cents when we didn't. He absolutely refused to believe that we didn't have a cent and he made us lie by writing the 90 cents down himself! If you read the fine print, they EXPECT you to tell the truth, yet they force you to lie because ?????
"Yeah, we have money. It's up your ass." :rofl; (Of course I didn't say this but if we could say anything we wanted, well....I can be poetic in many different ways.)
Another thing that caused a reaction in me was when he asked me why I'm procrastinating in regards to filing our income tax. I wanted to reach over the counter and do what I'd like to do with some of the medical staff. Fortunately, I was too tired. "It's hard being a caregiver," seemed to be the best answer I could muster.
"I know," he responded.
"Your wife is also ill?" I said this to myself but I should have said it out loud. And when I asked if I could please have a bus pass since I have to walk everywhere and run errands for LL, and I'm in pain because of my spinal fusion, sciatica, and the bursitis in my knee, I was told no.
Hey, this is feeling good.
So...since we didn't have the money to pay for the ID and they require it from you, they have to pay. So...I walk back to pick it up only to find it's at the other office. I call, tell them I can't walk anymore that day, and the woman on the other end of the phone tells me they can mail it. It comes the next day and guess what, it's short $5! And this if after the guy tells me we have to do this the day after we see him.
It doesn't matter that LL had a horrible couple of days after this and could barely get out of bed. It doesn't seem to matter that it looked like we were going into a crisis situation with him again and once again I wasn't sure if he was going to wake up the next morning. No, none of that matters. What matters is that we be the good little numbers we are so as not to bring any inconvience to anyone, that we sign forms that are untrue just so they don't have to do whatever they would have to do if we didn't sign saying we had ninety cents when we didn't have a penny. Nope, none of what is really going on matters.
You have money. Sign here. Lunch. Next..........
Thank you for listening and as always, lots and lots of Love to all of you.
PS. The flowers have been in bloom for awhile but along with it - snow, hail, cooler temperatures for this time of year...
At least I have the boa.
Ahhhh..........
Thank you everyone. It feels good to release this.
Oh, and LL is having a bit of better day today.
:grouphug;
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Okay, so now that I've shared some of our challenges, I'd like to share some of the good things. Remember a few posts back when I said we always get what we need. Well....we got what we needed.
Last week, I went to the community centre to speak with one of the workers there. While there, she informed me that she just received an email stating that I would be receiving a box of veggies and a box of fruit the following day. "You must have done something good," she said.
I guess I did because what I brought home was half a green garbage bag filled with a variety of potassium rich fruits and vegetables. You're probably wondering what I did to deserve all of those things. I didn't think I did that much but the help I gave someone was returned when I least expected.
I'm blown away. First you get hassled and then you get a big bag of food and not just any kind of food. Food that is unsprayed, from the local farms and distributors, and food that LL needs.
You know, there are problems with our medical system but I am so grateful we live in Canada. What those of you who live in the states have to deal with amazes me. There are problems with our social structures but once again, we have disability.
And someone that appreciated something I did for them, cared enough to show me in a way that truly does make a difference.
Wow.
What a week it's been.
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Morning thoughts...
Why can't we just speak softly and with calmness when speaking to the professionals about our concerns?
Why do we have to become loud or aggressive to be heard or taken seriously?
If I tell you that I'm in pain, do those words slip by your ears because I haven't shouted at you?
If I have to resort to shouting to get your attention, what will my consequenses be?
Can you just listen? Can you hear me when I tell you how I feel in a softened voice because I don't have the energy to speak any louder? Because I've been up all night due to leg cramps and all the other things that go with being a dialysis patient? Or because I hurt all of the time?
Do I need to take my valuable energy that I need for my body and use it on you before you'll understand or listen?
Anger affects our health. It takes energy away and if we need our energy to heal our bodies or to care for our loved ones, or just to get through a day, we shouldn't have to shout, become angry, or fall into depression until someone notices that something isn't right.
Those who stay alive by the use of a dialysis machine should not have to extert their energy to be heard. Their caregivers/ spouses should not have to extert extra energy either. Instead, they should be able to spend whatever time together they have in gentleness and peace. There are enough things to deal with when dealing with kidney disease and needing to become aggressive or having to spend time repeating yourself over and over again until you are finally heard takes energy away for the times you have to be strong.
For those of us who are caregivers, patients, and family members, the times to be strong never end.
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Mid-morning thoughts....
You have a tube hanging out of your belly and need to use a machine to stay alive. Your energy is so low that sometimes you don't even have the energy to sit up. Yet....you have to catch a bus to have your bloodwork done, or you have to catch a bus after day surgery to repair the cathetar that was inserted incorrectly. It's not easy. In fact, it's hell, but you do what you have to do. Otherwise, you die.
The bus door opens and you step up. It's crowded, filled with students heading to the college or the university. Unfortuantely for you, you have to take the same bus at the same time these students do. It's nice to see the youth so energetic, looking at their future, looking at what they want to become when they grow up.
So why then, does not one of these youths stand up to offer you a seat after they've finished staring at you when you walk onto the bus with a cane?
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Reading the posts from Petey and The Wife makes me feel so sad that
I don't have a caregiver. It is hard to have to go it alone. How nice it would be
to have someone watching out for me, an advocate. When I had my
leg amputated I have been staying at a friend's home and she took care of me when I
couldn't but I should be going back home soon.
LL and Marvin and others are so fortunate to have someone like you Petey and The Wife
that love them so deeply. I was a caregiver for my late husband so I know what
it is like. Oh to have those days back tho.
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Ohio, I'm sorry to hear you're feeling sad but glad to hear you have someone who is looking after you while you recover from your leg amputation. :cuddle; May continued care come to you on the wings of love.
I often wonder why we have a world where stuff and money seems to be more important than a human life.
This morning I watched a news story about cars that were keyed overnight. People are upset. They should be. Someone showed absolutely no respect to other people's property.
But really, does it matter if your car has a scratch on the door? Is this what's important? Is this what matters more than anything else? What if that person was fed up with being ignorned, fed up with being hungry, fed up with being sick and tired? What if they just wanted someone to care?
Shouldn't we think about our neighbours, like someone who just had their leg amputated, or someone who is hungry, or someone who just needs to know they matter in this world?
The society we live in seems to care more about the prettiness of our buildings, the perfection of the paint job on cars, of things that really don't matter at all. In fact, there seems to be more care put toward things that don't have eyes or ears or beating hearts.
You know, I just don't get it. I don't get it at all.
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The Wife, I am so glad you are back! I am so sorry you have had such a hard time with the medical community.
I have missed you, and your postings, they always made me think, and in the end, feel somewhat better.
I so wish there was a transport system just for the medical patients. Darn it. Darn them, for being so businesslike,
this is YOUR life. It's LL's life, darn it!!!!!
OB, I know how you feel. I live alone, and work full time, a lot of times, that is ALL I do. I go home, and crash. The house
falls apart because I have no one to clean it. I get take out because I'm to doggone tired to cook properly. The list can
go on.
But, I have my friends here on IHD. Hopefully, TW, you feel the same.
Annie
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OB -- :grouphug; and :grouphug; and :grouphug; and :grouphug; and :grouphug; . I wish you lived near me and Marvin because we could all help each other out.
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:grouphug; to those here.
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I've been thinking about you MyssAnne...and sending you love. I hope you're managing and taking care of yourself as best you can.
Ohio, I'm with Petey. We can't help you physically but we're here for you.
Let us know how you're doing, okay?
I've also had a busy day and haven't had a chance to come back until now. It's nearly time for me to crawl into bed but before I do, I wanted to add a few hugs for everyone here too.
:grouphug; :grouphug; :grouphug;
Love expands as we drift into the sweet sound of serenity. As a song of gentleness carresses our weariness, sorrow disappears. Together, in one breath, a choir of robins waltz us into the warmth of light.
:cuddle; :cuddle; :cuddle; :cuddle;
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My friend has a young son who has cystic fibrosis. The long term prognosis is not great, and a lung transplant is hopefully an option. Anyway, she told me he was in the hospital having surgery a few years ago, I think he was 7 years old at the time. She got in bed with him to cuddle in his hospital room and they had the TV on. The news coverage on every channel showed the world was in shock over the tragic death of Princess Diana. She watched as the lines of people were shown bringing flowers and leaving cards and crying in England and France and the US. She couldn't help but be overwhelmed with what seemed strange - this outpour of emotion for a woman that most people really didn't know. Yet here next to her was a little boy suffering, and no one paid any attention. Had the world gone mad, she wondered.
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Sad but true we are not to show pain. But pain is a reality of what we go through daily. In some way there is life in pain, a reminder that we are yet as well as we once were. Pain is valid and so many times we have to hide it or not talk about it because others don't understand or jsut don't want to hear about it. ???
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The Wife, I've missed you! Our paths are so hard. But like Petey says, we just find the strength. We just do. We have to. Even when we don't know where the hell it's going to come from. It's so hard fighting the disease, the doctors, the whole system, the hunger, but we have to. Couldn't do it any other way. You have something inside you that I need...maybe it's because you and I are on the same (HepC) path. I don't know. But you speak for me in so many ways and for others on this site, too. Is it possible to gain strength through the understanding of others that are in so much pain? This sounds so very sad...when all I want to do is wave a magic wand over everyone to take away all the pain. Much love and hugs to you and LL.
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You are all so beautiful.
My strength returns as I find the courage to express myself. And because you are all who you are, I would like to share a chapter from the book I am so close to finishing. I wouldn't usually post this anywhere but it expresses what I'm sure so many of us go through.
Love to you all. :grouphug;
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chapter removed ...it was just a peek for those who read it...
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Absolutely 100% " PHENOMENAL" writing.
Thank you for sharing.
Joannie
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Awesome TW. Chills, and sobering thoughts brought to the surface. Hope you are still writing your book. I've been lurking more than posting lately. Been kind of quiet and I was on vacation last week. Mom had her kidney appointment today - I put that in a separate post. Hope LL is doing good today. It's amazing how good sunshine can make you feel in spite of everything. :cuddle;
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Thank you Joannie and Odat. I was also thinking about the two of you and your loved ones.
I haven't been writing. Sunk into a bit of a depression I guess. This spring has been hard on me emotionally and I needed to go within. But here I am again.
I need to finish this book and sometimes need a nudge to push me forward. The feedback all of you are giving is, ummm, wow!
Sometimes I just want to crawl into bed and stay there but the sun is shining, LL's at the hospital and hopefully, they'll listen to him today. I wanted to go with him but I had to stay back and wait for the Baxter delivery.
He's been having a hard time with just about everything and it's time he tells them exactly how he's feeling. Really tell them, perhaps raise his voice so they can truly hear what he has been telling them.
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My friend has a young son who has cystic fibrosis. The long term prognosis is not great, and a lung transplant is hopefully an option. Anyway, she told me he was in the hospital having surgery a few years ago, I think he was 7 years old at the time. She got in bed with him to cuddle in his hospital room and they had the TV on. The news coverage on every channel showed the world was in shock over the tragic death of Princess Diana. She watched as the lines of people were shown bringing flowers and leaving cards and crying in England and France and the US. She couldn't help but be overwhelmed with what seemed strange - this outpour of emotion for a woman that most people really didn't know. Yet here next to her was a little boy suffering, and no one paid any attention. Had the world gone mad, she wondered.
Sending love to this boy and his mom.
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You know your writing touches the soul.
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Thank you for posting part of your book. I cried. It's beautiful and real. Esp. the part about checking on his breathing. I hope you publish this book and let us know about it.
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I have just read all 13 pages of this thread and am tremendously moved by the experiences and expression of those of you who have posted here. TW, I am honoured that someone with your literary talent is part of our family. I am looking forward to reading your book someday. I salute all of you who are caregivers. Just your coming to IHD speaks volumes of your care, concern and commitment to your loved one. May you continue to find daily strength. I love you all. :grouphug;
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TW, your words are always so inspiring, calming and full of compassion. Thank you for sharing.
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I woke up this morning wondering if telling how it really is scares those who are headed for dialysis. It is never my intention to hurt anyone or cause another sadness. And then I came here to read your responses. Thank you.
There are many in this world who suffer with illness, the frustrations of dealing with government agencies, the medical system., and those who just don't get it and say things that are so inappropriate, it feels insensitive. There are many who experience poverty...
my voice is just one voice and if it can bring awareness to what so many can not speak openly about, then I feel that all that I have and continue to go through is for a greater purpose.
When I was nine, I told my mom that I would one day write a book. I didn't know that the journey I had found myself on would be the story. One day I hope to publish my book. In fact, I hope that it's a best seller and brings not only awareness of what many have to endure every day but money so that I can help when others find themselves in need of something.
I know I don't respond on many posts here but even though I don't, please know that I think of all of you.
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The Wife, it's scary NOT knowing.
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I'd have to agree Anna. I'm a person who wants to know as much as possible, what to expect, what everything means, and when I need too call 911.
Just so everyone knows, the visit LL had at his kidney care clinic yesterday went well. I've just gained a lot of respect for his doctor because he admited they really didn't know what a person's blood pressure should be while on dialysis. LL also told him about his state of mind and how he's been thinking about quitting dialysis. From what he told me, his doctor truly heard him and showed compassion. Sometimes there's nothing another person can do but a gentle and loving heart can help move one out of despair and into a place of feeling like others care about what they are going through.
LL suffers a lot of pain and they won't give him anything for it. I think it's because they're afraid of the addiction it can cause. His doc told him he needs to walk more. Here's the catch: Every single joint in his body hurts and walking increases the pain. I guess all he can do is try and he has on the occasion but afterward, he seems to cramp all night. Sometimes, you just don't know what to do. And sometimes you just need someone to listen, even if they can't ever really understand.
As a caregiver, I often feel helpless but as I caregiver, I can show just how much I care.
When I think of what a hero is, I think of all of you have to endure this disease. How some of you work, amazes me, how some of you do it alone, amazes me, and how you continue with life even though it is filled with pain and difficulty, well...I thank you for showing me what the strength of the human spirit is all about.
With love always.
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Oh TW. What a horror for LL. If only. If only you were close to a pool that was accessible AND warm. That would be so much help
to LL's joints.
I AM glad his doctor listened to him. But at this point I would not worry about addiction, for heaven's sake, or rather, for LL's sake.
He NEEDS something. I'm thinking of the two of you, so hoping that more miracles drift your way, to ease your heart, and to ease
LL's pain.
love,
Annie
:grouphug; :grouphug;
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TW if the pain is so bad that its unbearable sometimes why don't the docs give him something. if he gets addicted big deal at least he won't be in pain. Just my :twocents;
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My thoughts exactly. What's worse? Being addicted to pain pills or being in pain all of the time, so much that you remain a shut-in because it's too painful to walk?
Unfortunately, he was told he can't soak in a tub because he has the stomach catether.
I'm okay...just concerned for LL and wishing there was something I could do.
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Wife --
My feelings of helplessness to make Marvin better are some of the toughest emotions I go through. They just have to give LL something for the pain! Don't they understand? Oh, goodness, my heart hurts for LL and for you. Hang in there! I thinking about you two, and I'll say an extra prayer for you both tonight.
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Thanks Petey.
LL's blood results from a few days ago just came back. His PTH levels have increased again! This time, it's by nearly twice...
okay...here's numbers.
On the test it says it needs to be less than 6.4. When I spoke to the nurse last about this it was 18.3 or something like it. I asked them why they weren't concerned about this and she told me it's because his other levels that go with this were in the normal range. Now it's 31.9. I've read up on what high PTH levels do and I am concerned! AND...I'm seeing how the pain has increased for him.
Can someone please explain this to me. I've gone to the link in general disscusion about PTH but I'm still confused. Somewhere on the net, and I wish I had saved the link, I found that it doesn't matter if your calcium and phosphate levels are normal. If your PTH is high, you should be concerned.
I don't understand these numbers but I can see how exhausted LL is in and how much he hurts.
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Wish I had words of wisdom about the PTH for you, but all I have is a :grouphug; Your writing is stunning. I hope today goes better.
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TW
Chuck also had elevated numbers on his PTH tests and the Dr.s put him on hectoral. Recently they increased his dosage. Too high is hyperparathyroidism.
When I did my research on the PTH here's is how I understand it to be:
The PTH hormone is what controls calcium and phosphorous levels and due to dialysis the parathyroid glands produce too much of the parathyroid hormone which increases the amount of calcium in the blood. That calcium is removed from the bones and the intestines and release less calcium in the urine.
SO, the result can be:
constipation...nausea..vomiting...fatigue
Therefore I believe that as far as Chuck is concerned his muscle weakness , which is not improving even with Physical therapy, could be the depletion of calcium in his bones.
Don't know if this helps, but thought that I'd just let you know that maybe with LL's level being high it could explain the pain , weakness
and some other problems????
We go to the dialysis clinic on Wednesday and I am anxious to see his numbers on all his blood tests.
Need to get to the bottom of his problems.
On a lighter note, we are throwing an engagement party for my middle daughter Elise next Sunday at my house. We are expecting over 50 guests.
It's going to be outside so we are praying for nice weather. We are doing everything ourselves. It's kind of exciting. I must be :urcrazy;
Have a great day!
Go Flyer's!!
Go Phillies!!
Joannie
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Thanks Psim and Joannie.
I found the link I believe on general discussion, thanks to the person who posted it on IHD. It's now a part of my desktop.
When I read up on PTH before, I thought it had something to do with LL's pain. I called the nurse at the clinic and told her my concerns but they're not concerned because his calcium level is okay. From what I understand, you don't have to have high calcium levels to be concerned about the PTH levels. The site says most doctors are wrong but try to tell them that, especially when you're not medically trained.
How do I get them to listen and take his pain and everything else seriously if they don't think it's a problem? I live with him and have seen the changes. I also see how hard it is for him to walk just around the apartment on his bad days. If they don't do something about this, he could end up in a wheelchair, have a heart attack or stroke, or worse.
Is there a test that measures bone loss, calcification of the joints, etc, and if so, what are these tests called? I know I would feel better if they could confirm what I suspect. With confirmation, we could then deal with it.
On a better note...
I was hoping for a sunny day but it's cloudy. This is actually a good thing because I can have a puttering Sunday.
Congrats on your daughter's engagement Joannie. Wishing all of your family members lots and lots of joy.
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It's cloudy here too!
For bone loss there is the bone density test. Don't know about calcification of the joints, but I'm with you and also worrying about Chuck getting closer and closer to being confined to a wheelchair , stroke or worse.
What is it that you suspect is causing LL's pain, weakness etc.?
I'd like to ask the Dr's at the clinic on Wed. to explore any and all possibilities for Chucks weakness and immobility.
Well, although the suns not shining and we have to face these challenges I believe that we are given them to restore us, as we struggle in faith.
Joannie
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What is it that you suspect is causing LL's pain, weakness etc.?
Joannie
I suspect the pain is caused from his high PTH levels. The doctor has mentioned, before dialysis, that he did have some osteoperosis. I imagine this was caused by the prednisone they had him on. I also think he has gout because his big toe can become quite painful at times. From what I understand, PD causes more weakness in patients than Hemo, plus, with high PTH levels, a machine that only does 10-14% of what healthy kidneys do, it's no wonder he doesn't have energy.
I think we're given this to make us tired. :rofl; That, and to appreciate the good things in life. To appreciate life itself.
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I really hope you find some answers. Trying to get complete, reliable medical info has got to be one of the most frustrating, difficult and scary things.
I'm really feeling for your struggles with this, maybe in part because my kidney failure was cause by hyperparathyroidism that went undiagnosed for years. Even after it was clear I had ESRD, my neph ignored the slightly high calcium levels on my blood tests. I outright asked him and he said it was nothing to worry about. He even recommended I get eat more dairy products. Three months later I got a 10 pm phone call from the blood lab saying I had dangerously high calcium. So yeah, docs ignore the wrong things sometimes.
So anyway, thinking about LL's situation, I googled hyperparathyroidism and "normal calcium" and the things I read sure sounded like you can have all the symptoms without having really high calcium levels. Here's some of what I found. Best of luck in figuring this out.
http://www.surgicalroundsonline.com/issues/articles/2007-06_03.asp is a very technical site, but might be interesting.
http://parathyroid.com/diagnosis.htm is more plain English. Here are a few quotes from there...
"It is NORMAL for patients with hyperparathyroidism (parathyroid disease) to have calcium levels that are high one time it is checked, and normal the next time it is checked. ALL patients with hyperparathyroidism will have calcium levels that change from day to day, week to week, month to month. MOST patients with hyperparathyroidism have calcium levels that FLUCTUATE from high to slightly high, to high-normal."
<snip>
"In cases where the calcium is normal or intermittently slightly elevated and the PTH is high normal, we rely on lots of other information (for example, do they have significant osteoporosis?, do they have kidney stones?, do they have symptoms of hyperparathyroidism?, do they have excess calcium in their urine?) "
<snip>
"Well it turns out that only 32% of the last 7000 patients we operated on EVER had even ONE calcium level that was 11.5 or higher. So if you are waiting for this "magic" number, your tumor will continue to grow, you will continue to feel bad (see our symptoms page), you will continue to get worsening of your osteoporosis, and you will lose the joy of life. And... while you are feeling bad and your bones, heart, and kidneys slowly get destroyed by the high calcium, chances are that you will never get to the "magic" number of 11.5. Most people will never get calcium levels that high, and if they do, they have more damage done to their bodies. The severity of hyperparathyroidism CANNOT be measured by how high the calcium levels are. The size of the tumor cannot be predicted based upon how high the calcium levels are. You either have parathyroid disease or you do not. How high the calcium is doesn't matter... you have a parathyroid problem or you do not. It is a yes/no question. It is not a question of "mild" or "severe". "
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I'm sorry to hear your doc didn't take you seriously Psim. This is why we need to learn as much as we can and keep at them. Sometimes, their lack of follow-up could be a case of the number of patients they have to deal with and as you know, the doctors in this province are swamped. LL's neph has something like 1500 patients. The other problem could be a pride thing. I know we're not trained like they are but don't they realize that we might just have something to offer sometimes? Good doctors won't allow their pride to come before the health of their patients. The information you provided is exactly the same thing I've been reading. It certainly is a good site! I think I need to be the advocate here and see if I can get LL's doc to read the information on the site. I think I'm going to call his office, get his email, let him know about my concerns and send the link this week.
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When LL first began dialysis, there was an improvement, but then he started to decline. Was it when he switched from hemo to PD, or is it his PTH levels?
Yesterday morning, he woke up with leg cramps AND his feet were sore all day because of the fluid he was holding. He's not had the problem with fluid in his feet since he began dialyisis and I'm wondering how it's possible that he can cramp because too much fluid has been drawn out while having too much fluid in his feet?
Any answers would be appreciated.
Oh, and in regards to the PTH levels...is 3.1 the same as over 300? Since there are different ways of recording these levels, I'm left totally confused.
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TW, I do believe that the 3.1 is the same as being over 300 because one of Chucks PTH levels was 394. Chuck also has had fluid in just one foot for a few months.
Just a thought :
Maybe LL's leg cramps are actually due to the PTH being so high that it's sucking the calcium from his bones.
I don't know, but maybe after Chucks visit at the clinic tomorrow I can pass on some useful info.
Just wondering, did they prescribe anything for LL when they discovered his high PTH levels?
The medication that Chuck has been taking was almost $ 500.00, just for one month supply, at the Pharmacy yesterday. We just fell into the da** gap. I didn't take it because we have enough till Friday and I will discuss it with the Dr. tomorrow. Hopefully, with the recent increased dosage, his PTH levels have come down. If not, they had better find another drug for him, because we can't afford $500.00 a month just for one drug.
Don't mean to complain, actually looking forward to our visit tomorrow.
Have a great day!
Joannie
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Thanks Joannie. I'm also thinking 3. whatever is the same thing as 300. Our system is a bit different since we're in Canada, and as far as LL getting any drugs for his high PTH, the answer is no. They're refusing to recognize that it's even a problem because his calcium numbers are okay. However, he's not and now that you've mentioned that you have to pay $500 per month for one drug, I'm wondering if this is why. We are so fortunate because LL doens't pay for any medications. The kidney foundation covers all of them and the pharmacy delivers. I don't know how anyone can pay that kind of money for one drug. Perhaps, the doc here is refusing to give him something for this because of money. Who knows, maybe that's the true reason they won't give him pain killers either. As far as the system goes, I know they don't always tell the truth.
LL's going to try a 2.5 bag for his last bag tongiht. His feet are still swollen, he's in pain and can barely walk, and hopefully, this will solve the problem and not cause him to have the severe leg cramps tonight. Let me know how your appointment goes and what the doctor says. Good luck and a big hug to the both of you!
ps. I don't think you're complaining-just stating the facts.
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I hate making assumptions about why a doctor does or doesn't do certain things. There may be doctors who are only in it for the money or prestige, and doctors who care. Unfortunately, they're working in a system that often has their hands tied or in a system where there are more patients than they can properly deal with. They have to follow the rules, the budget, and everything else that might go against with what they wish they could do, and the patient and their families get caught in the middle of it.
Sometimes, I become angry with the medical staff, and when I stop and contemplate this, I realize that my anger is toward the illness that has robbed so much from my partner's life. From my life.
But here we are, dealing with what we thought we'd never have to deal with. We do it day after day, month after month, year after year.
How I wish we could return to the time when my partner was still healthy but we can't. This is it, our life, and the only thing I can do is to honour my feelings as they come forth. Mostly, I'm okay and in a state of acceptance of what is. Other times, emotions jump out of nowhere and I find myself asking what in the world we did to deserve this.
When I'm feeling down, I think about the seasons of nature. I listen to the crows as they yell at those who walk too close to their nests. I watch the buds as they begin to blossom, the leaves that fall in autumn, and the waves that crash against the shore.
We are no different than nature, and as nature, experience the different seasons of life. There are summers where sunshine warms us, winters when cold harsh winds seem to knock us over, and springtimes when flowers wave hello in warm and gentle breezes.
As each season expresses itself, a deeper appreciation for those I love and for the experience of life itself, emerges. While the sun brings light into my room, I just want to let you know how much I appreciate all of you.
Thank you.
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TW, you have a delightful way of putting our challenges in perspective.
Today while visiting the PD clinic the Dr. decided that Chuck needed to be hospitalized because of a toe that has not healed properly. He fell a few weeks ago in the shower and his toe had a big blister/bubble and the toe turned black. We had a visiting nurse coming in a few times a week and she said that is was OK and healing . However, the toe turned black where the blister/bubble was and he might need an amputation. We'll know more tomorrow when he is seen by a podiatrist and a vascular surgeon. They might be able to treat him with antibiotics if the necrosis is not too bad.
Anyhow, last month he had a partial penectomy due to necrosis of the penis. I told him that if he was able to handle the penectomy, he can handle anything.
I just hated leaving him in the hospital. He is blind, he can't get around ,if the button slips out of his hand, he has no way of getting anyone to help him. He's in a strange place with surgery hanging over his head. In the past, he'd have a tray of food delivered and noone there to help him eat. Can you imagine a tray of food and not being able to see anything and no one to tell you what or where anything is on your plate?
I am sorry, I just needed to get that off my chest. I feel a little better now.
Of course I'll be there for lunch and dinner and I will gladly feed him and make sure that he gets whatever he needs. It just when I'm not there to help him that makes me crazy.
It's been a long day.
By the way TW, I asked the neph if the high levels of PTH could be sucking the calcium from his bones and she said that's a possiblity, but with Chuck and maybe LL it is that and more.
Gotta go.
Joannie
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Joannie, I so agree with you that TW has a great way of expressing herself that can help even the most down-hearted person feel better.
I wanted to reach out to you about having someone in the hospital that needs help for the simplest things. My dad was in the hospital for two months and during that time he needed so much help just to eat. Thankfully most times someone was helping him eat and I would take over. We have to depend on others in situations where our hearts are out there and our expectations are very high as to what needs to be done. It's very hard to leave. Some days, I didn't. I just called work and told them that there was too much going on, too many tests that were being done. We can all just pass around :grouphug; because a support system is the BEST - and I've found one here in IHD. Take care.
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Oh Joannie, never apologize for sharing what is taking place in your life, or for any feelings you may have about it. I can't imagine what it must be like for Chuck but I do feel for the both of you. I'm exhaling a big breath of love for the two of you.
Have you ever noticed how it's acceptable in this society to speak about a trip you've taken or are planning to take, the house you're buying, or the new car you've purchased? Have you ever noticed how easily people listen when you describe the wonderful meal you've eaten during an evening out, the live show at the theater you attended the night before, or the new pair of shoes you've purchased?
Start talking about dialysis, the details of the illness, or the feelings that go with it, and watch as people walk out of your lives. People ask how our spouse's are but when we start to tell them, they drift away. They give little signals, clues - and you can't help but feel they don't really want to hear. Or are they just afraid? Maybe they only asked because they're curious, or to be polite, like the clerk at the grocery store when she asks you how you are.
Sometimes, we give the standard answer. We say we're fine but we're not exactly telling the truth. We've learned. We've learned who we can talk to and who is willing to listen. Truly listen. And sometimes, we are fine but still, we have things in are lives that aren't.
Why is it okay to share the details of the things that are labeled positive and not with the things labeled negative? When we do share something that is seen as negative, why is it looked upon as venting, instead of simply sharing what is taking place in our lives? And why should we ever feel the need to apologize when we share how much our loved one's are suffering or how our own heart breaks with all we witness? Or how relieved we are that the latest crisis didn't end the life of our loved one?
Do we feel we are burdening others with our pain? Or do we believe that what we say will be seen as complaining?
We don't want to bring anyone down. We don't want them to feel sorry for us either. As far as complaining goes, we're not. We're just stating the facts of what we deal with every single day. If we could, we'd love to talk about a trip, or a fancy meal we had on our evening out, or how we're planning to go for a walk after dinner, but we don't do those things.
Our trip evolves around tubes, blood pressure and dialysis machines. Meals are eaten inside hospital rooms and for some of us, our spouses just don't have the energy to go out for even a simple cup of coffee. We wish they did, just like we wish they could take out the garbage. But we don't want to tell you that. If we do, you might think we're complaining. "Oh, you should see what my husband won't do," someone tells us. But they don't get it. They don't get that our spouses aren't doing something because they don't want to, no, they don't do something because they don't have the energy. Can't see. Can't move without pain.
We try to explain but there's no use. People just don't understand. Sometimes they try but really, how can anyone understand what something is like unless they experience it?
Along with all of the challenges we have to face, there are gifts. Like the time the doctors told us they didn't think our spouses might not make it through the night, and they did. Or the appreciation and peace we found when we sat and observed the tulips in the park after visiting the hospital. Other gifts come in the form of seeing how our lives have impacted the lives of our children, of how, through our experiences, they have come to recognize just how precious life is.
We see the gift with every day our spouse stays alive, the moments they do find laughter, and the way the human spirit picks up whenever someone does come over to visit. We find gratitude in having a meal to eat, the moments when our loved ones do have enough energy to cook it themselves, and the joy we see on their face when they find the strength to step outside and watch a child play.
I can't understand what it's like for someone who lives with ESRD and is blind, someone who lives with ESRD and has a part of their body amputated, nor can I understand what it's like to remain inside for three years because of illness. But I do know what it's like to live with someone who goes through so much and the best thing I can give anyone who is experiencing any kind of suffering, besides a helping hand, is love.
Love - and to truly listen. To listen to what it's like to live with ESRD and to listen to just how much it means to have those who love you and listen without walking away.
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Odat - I was writing at the same time you were.
A big :grouphug; to you.
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And to the moderators of this site - THANK YOU! for allowing me this space to express myself.
This is a gift.
:grouphug;
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Joannie, I can't imagine being in that situation. And I know how hard it is on you. Sending you good thoughts :cuddle;
TW, you give us all comfort and peace. Thank you for sharing your thoughts with all of us. You are good at calming the soul.
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Joanie, I feel so badly that you and Chuck are facing yet another awful challenge. Just as LL is blessed to have The Wife, Chuck is very fortunate indeed to have you in his corner. My thoughts are with all of you and my wishes for less pain and more peaceful times.
Gail
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How very nice to come home from a long tiring day at the hospital, grab a bowl of microwaved leftover food, and sit at my computer and read all the wonderful posts by the most caring , kind and compassionate IHD posters.
You make me fell so good inside that I am at peace with our present situation.
Although, I did just call the nurses station to make sure that they are aware of Chucks needs. I left the hospital as they were changing shifts and I wasn't able to talk to anyone. Michelle ( his nurse) assures me that he is in good hands.
Tomorrow they will do an angiogram to check for any blockages and if so will try and correct the blood flow. If not, probably amputation. But we'll cross that bridge when we get there.
Chuck is in good spirits but I know that he is worrying about the surgery. I tell him that we are going to tackle it and get through it and keep on :boxing; conquering our challenges.
Again, thank you all for your support. It's like you are here with me in this quiet home without Chuck. Not that he makes a lot of noise or anything.
Just a little lonely, but than I think of him in the da** hospital .
Joannie
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Joannie, my friend is always telling me "don't cross that bridge until you come to it. God isn't finished building it yet". You have a good attitude and spirit. After you get the results of the angiogram, you will know what path you will take. The bridge will be built and ready if you need to cross it. Tell John we are all praying for him. And take care of yourself, too. :cuddle;
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I'm thinking good thoughts about you and Chuck and hoping things get better soon. :grouphug;
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Good Morning Everyone,
I hope you all slept well. How was your night alone Joannie?
I'm sitting here with a cup of coffee, thinking of you, and remembering the lonely feeling and all of the other feelings we get when our loved one is in the hospital.
I think we've all become really good at taking things one step and one day at time. This illness has taught us that.
When we stop to think about it, taking one day at a time is a good thing. We could jump ahead into the future and worry about what may or may not happen, but the fact is, we're not there. We're here, now, and this moment is what we have.
In this moment, the robins are singing outside my window. A breeze blows through as a crow caws. I can tell she's sitting near or on her nest of the tree that is now turning green. It's a new nest and one that wasn't there last spring. How I love to see the lushness of all the different trees as they come into full bloom. How I love to be woken by the melodies of the robins nearby. As I sit back in my chair, I drift on their song, into a land of peace and beauty.
I take a breath, inhale life, and join you in this moment. May your day be filled with peace.
:grouphug;
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Odat - I was writing at the same time you were.
A big :grouphug; to you.
Ya know TW, I am just gonna grab a tissue before I open this thread. Your words are so moving and meaningful that you make me cry! A good cry, no worries. Crying is cleansing. I remember a movie with Holly Hunter (not the title though) where she would go somewhere far away from people and SCREAM and cry. Sometimes you just have to grab a pillow though - who has time to run when you need a good cry?
I bow to the word master :bow;. Love ya TW
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Have you ever noticed how the colours of the trees and flowers seem to be more vivid after a good rain? Or how the scent of flowers expand and reach deeper into our senses?
It removes the dust from the leaves and opens petals of softness.
Tears remove the sorrow that weighs us down and after they have fallen, we are lifted into the melodies of an expanded heart.
I love you too Odat and want you to know that you and your mom have a special place in my heart. :grouphug;
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Thank you all for your well wishes and your support.
TW, I slept OK last night and it's just funny how I feel safer and more secure when Chuck is here even though, I know that he would not be able to protect us but I still think of him as the tough, yet gentle, strong man that he was.
Won't know how they are going to treat Chuck until tomorrow. No blockage from the angiogram but they still have to address his toe and a few fingers.
Thanks again.
Joannie
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I'm glad you slept okay Joannie and glad to hear there are no blockages. I know what you mean about feeling safer when our men are at home with us. LL could spend all day in bed and not make a sound but when he's at the hosptial, it's too quiet. Keep us posted about the toe and his fingers. :grouphug;
Lots of love to the both of you.
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Just a quickie..I'm beat
Chuck came home tonight.
The Dr. will be able to treat his toe in his office.
He is absolutely delighted to be home in his own bed.
Sorry for hijacking this tread.
Thanks for all your prayers....They worked!!!
Good Night,
Joannie
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:bandance; Yay! Chuck's home. :clap;
You didn't hijack this thread Joannie. I'm glad you're here. :cuddle;
Here's a gentle song to soothe you while you get some rest. :guitar:
:grouphug;
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Glad you're home Chuck
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So glad he is home. Hope you both get a good nights sleep :grouphug;
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:cuddle; Glad he's home with you Joannie!
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Joannie, I'm glad Chuck's home with you! Hopefully he'll heal a lot better and faster with you around, too!!!
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Thanks Myss Anne for your kind words.
He's is soooo happy to be home!
I don't think he cares how he feels, just as long as he is not in the hospital.
Have a great day!
Joannie
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Where is THEWIFE? I miss your writing. Are you okay?
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Thanks for thinking of my kitkatz. I'm okay....just had a busy time for awhile. I'll be back when I can sit and share again.
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I miss you too, TW. I sure hope LL is okay, that it's easier for you there in Canada lately. Give your grandson a hug for me, next time you see him!!!! :cuddle;
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I miss you calming words, too. Hope you are both doing ok. Come back when you have time. You are missed :grouphug;
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Well, MyssAnne, he'll be getting a hug from you tonight.
LL's about the same...exhausted, body pain...ya know....a dialysis patient.
Me, ummm....what can I say?
Well, to start with, I actually asked the same question kitkatz did. Bare with me as I share a bit of my sorrow with you. Sorry Paris. Not sure if these words will be calming, but I feel the urge to share.
"Where have I been?" I asked myself as I settled into bed, feeling as though I had just returned from a long journey. I hadn't gone anywhere, except deep into my own heart.
Back into the womb of my soul where an embrace holds you, even when you don't realize you're needing to be held. Deep, where thoughts swirl, like leaves that are lifted from the ground as a strong wind blows. Deep and loud, like the cawing of a crow when it senses danger.
I listened to the crow as it cawed. And cawed. And cawed. For three days, it cawed non-stop and for three mornings, just as the sun was about to rise, it started. All I could do was watch as it banged it's beak on the branch where a raccoon settled into a branch, and into sleep. For three mornings, I witnessed the raccoon gracefully climb up the tree, and on the final morning, make its way to the nest for its morning feast.
I have never heard such devastating cries. The crows were inconsolable, and I, removed, yet somehow in the center of it all, thought of the raccoon that sleeps in our house. In the house of illness where a machine keeps somebody alive.
When you witness a raccoon in a tree, sleeping, with it's cute little face, and with its paws wrapped around the branch, your breath deepens. And when you witness the same raccoon destroy life, or hear the cries of those it has left devastated, your breath deepens again.
It seemed that wherever I looked, or whatever I listened to, I was reminded of death.
Death.
"Aunty xxx died last night."
My breath deepened.
"Take out the garbage!" I said to my partner. I tried not to yell, but maybe, just maybe, if he'd get out and walk, he'd get stronger, better, some kind of life - besides sitting inside and doing nothing. Maybe if I gave him a good shake, something would shift, change, become what it can never be.
He took out the garbage.
Exhausted.
Breathing much too hard.
Nearly collapsing when he came inside.
"What the hell I have done?"
A deepening breath - cleansing tears.
"It's OK," I confided in myself. "It's OK to cry."
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Let your tears slide down your face and merge with the earth. Let them merge with the flowers that blossom, upwards into the trees with expanded branches, and into your heart.
Let the embrace hold you, comfort you, love you.
Feel the gentle breeze as it blows through the opened window. Feel the scent of roses as they carress your hearts.
Breathe and release your sorrow. Breathe and feel the healing from within your very own heart.
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Can I really come here and share my deepest feelings? Can I share my thoughts of death with those who need machines to stay alive?
Even though this is the caregivers section, caregivers are not the only ones who read.
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What lovely words, so beautifully written, very haunting. You can express what so many of us feel, but we can't find the right words. I feel honored that you come here and share you deepest feelings; knowing you are surrounded by friends. Your words are such a wonderful gift. Even full of sorrow, they are comforting, in a strange way. I am probably not making any sense. I just really appreciate you thoughts. Your pain is real and your joy is real. We had a hawk take a baby squirrel from its nest. For hours after, I could hear the mama squirrel cry. I didn't know squirrels could make a sound like that. It was so very sad. Did I ever even think that squirrels could feel or express their feelings? No. And then reading your post, I see that you saw the same thing with the crows. And you help me think about what me husband must feel some days. I try to be kinder because I know he is worried about the future. He must get frustrated that the house isn't as clean as it use to be or the meals aren't as elaborate. So, even in your dark days, you are helping me. Thank you for opening up your heart and sharing. :cuddle;
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Oh yes. Share what you need to share. I agree with Paris. Your words are so haunting, so evocative.
I care so much for you, and for LL. It's such a hard road for both patient and caregiver. Each has their own burden, while
trying to care for the other.
I'm sending you hugs for you and for LL, hopefully passing on encouragement that yes, it will get better.
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TW, I too hope that you'll always feel free and welcome here to share WHATEVER it is you're thinking, feeling, going through. I know that I visit my deepest corners regularly and in fact I believe that one of the few "good" things to come from this burden is a heightened awareness of the brevity of our time on earth and the fleetingness of well-being, of happiness and of the opportunity to do things that really matter. I, and I'm sure you too, would happily skip the chance to be so familiar with this sharpened sense of our fragile ties but we have it anyway so it would be wrong, in my opinion, to NOT honour our emotions by expressing them and connecting with others.
You do this well, TW, and I hope you never stop expressing (I'm sure you won't stop that) or sharing your writings here with us.
Gail
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It means so much to me to know that I can just be myself, that I can express whatever I need, process whatever I have to process, and not be turned away.
Thank you all so much.
I guess I've gotten used to being careful of what I say, and to whom. When our own families don't want to hear, we wonder if it's OK to speak. When so many who are lost in the world of the material, cannot face their fears or feelings in regards to death, dying, and illness, we wonder if it's better to remain silent.
And so we walk in silence. We give short answers, answers that ride above the surface, while underneath, a current stirs, a passion, like roots growing underground. In these roots, we reach and take hold to find the core of our very selves.
In our findings, we are not afraid to question, to face and hold the mud mingled with the roots. We follow until we reach the place where the root touches the water, quenching our thirst.
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Listen.
Listen with your entire being. Feel the tone of life's song as it beats in harmony, and in time with your very own heart. Feel the vibration as it soars on clouds that dance across the sky in free-form creation.
Step barefoot onto tall and uncut grasses, into clarifying streams. Feel the texture of the leaves that dance upon your head. Inhale the scent of the dewdrop that merges with the petal. Exhale to expand the petals of your being.
Dance.
Dance in the song of life.
Let your breath move you. Let it slow and deepen. Let it expand.
The sun has risen and we are blessed to know another day.
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The river of life pulsates as I dance in gentle moving waters and streams. And I, in the silence of the morning, reach out to touch all I see before me.
I reach and hold, honour and love.
It is such a incredible feeling to taste the flavours of this stream, the flavours that moisten my lips like lemonade on a hot day, or tea sweetened with honey, or the juice of an orange as it trinkles down my chin.
Standing barefoot in the stream, I reach out and pick the ripened fruit.
Tasting life, I digest all of its flavours, and bow my head in gratitude for the meal I have been given.
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I bow my head in gratitude for the beautiful words I have just read.
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So glad Chuck is home.
Good to see you writing again TW.
Your words are so deep and thought provoking.
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Thanks TW. :grouphug; I feel like I am standing with you; hearing, tasting,feeling,seeing the world around you. Thank you for allowing us to read your personal thoughts.
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You know, I just want to sit here and give all of you a big hug. How can I even begin to express what your replies mean to me? Especially after I've spent time in serious thought about how to live my life.
That's the thing with having an ill partner. We think about these things. Well, at least I do.
I used to have everything figured out. (Or so I thought.) I was going to work in the job I hated until I was fifty-five, pay off the condo I purchased before my partner joined me, retire, then write. Oh yes, I would sit high above the street to see the city in twinkling lights. I'd wear my favourite jammies and forget about combing my hair. Music would be playing in the background, and words would flow with ease through my finger tips.
It was a wonderful dream, all perfectly organized and perfectly timed. Well, the condo was leaky and a huge financial and emotional loss; the job I wished I could leave so that I could write ended due to downsizing, and I'm still too young to collect my pension. Instead of looking out at a beautiful city view, I'm sitting in a room with drawn cutrains. And instead of beautiful music playing in the background, the sound of whatever my partner is watching on TV, seeps into my senses.
Ah, but I feel good. I am wearing my comfy jammies, feeling my uncombed hair brushing against my face, catching the glistening of the sun as it tries to push through the closed curtain, waiting for the time when I can get to my pension, and writing.
I love to write, to let my thoughts fall in front of my eyes, to see that which I feel, to touch these feelings, and to touch others. And now you have touched me with your responses - with your hearts.
Maybe that's what everyone in the whole world needs to touch. And maybe we need to reach out and express what lives within our hearts with others. Maybe that's how we lift each other out of darkness, out of the moments when dreams are crushed.
I think about my future and wonder if my partner really will pass before I do, and if I will be able to walk through the sorrow that death brings or if I'll simply give up because I've had more than my share of hardship and heartache.
And then I think about all that swirls inside of me, like water getting ready to run down the drain. And I think of this moment, these words, and those who gather to listen.
Perhaps, I have found my answer to how I would love to express the life I live. Of how to make a living. And maybe, just maybe, that which has fallen away has been for the purpose of making room to do what I have always dreamed.
My partner sleeps off and on throughout the day. When I look at him, my heart cringes like the old dry cedars in the forest. When I want to walk along the beach, he's not there. And so I sit and write.
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Received In my email today:
"Feel yourself being quietly drawn by the deeper pull of what you truly love." Rumi
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TW.. I can tell you this.. whenever I feel lost, confused by work by son, by life.. I come here and read.. and re-read what your heart has written.. your words soothe me...and i thank you for that and so much more.
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TW, it is late at night. I am not sleeping again because of vomiting. So I come here; looking for new posts by you. And now, I will sit in my quiet house, but my mind will be :cuddle; walking on the beach, because I visualize your words. So, the water is washing over my feet, and the ocean will sooth me back to sleep. Thank you.
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:grouphug;
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:grouphug;
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Missing you, TW. Hope you are doing ok. :grouphug;
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I was just thinking of you guys.
I'm okay. Well, sort of. My back and sciatica have been causing me a lot of grief. After a year and half of having my partner on dialysis, I decided it was time to take care of myself. So....I made a few appointments with my doc. One for my back, the other for a general check-up - the works. Thought I may as well catch up on all the things I've been putting aside.
I told her I was your typical caregiver. Take care of everyone else first and when something gets so bad you're in tears over the pain, it's time to do something. And while you're there, you may as well make a few more appointments, or you'll just put things aside for another few years.
It seems that caregiving has taken its toll on me. Not so much the caregiving part but the 'losing' my partners help part, and...okay, the extra work us caregivers do. He used to carry the groceries and do all the stuff that I shouldn't but without any help, I've had no other choice but to do things myself. All the things that have made my pain go from what used to be mostly my back and hip to now all the way down to my heel. Lately it's been so bad I've wanted to take a hacksaw and cut myself off at the waist on the right side.
This has been wearing me out and I could have done without cooking dinner last night. A piece of bread with a bit of peanut butter would have worked for me but someone had to cook LL a proper meal since he was having a really rough day again. After I made dinner, he took two bites, put his plate down, then said, "I'm too nauseous to eat."
I wish I could write something to bring gentleness to all of your hearts, something to bring joy. Maybe I can just tell you that whenever I feel like I need someone to connect heart to heart with, I think of so many of you.
There are several pots of purple flowers on my balcony. I can never seem to remember the names but they are a beautiful sight. They sway in the wind and under the shining sun. They bring me comfort, peace, and a smile to my face. When my grandson comes over, we step outside, and to each flower, he waves and says "hi." And then he places his hand on the petals, turns his eyes toward me, and in his not quite formed word, speaks the word I love to hear the most. "Gentle, gentle."
Ah yes. Gentle, Gentle.
Sending you all a gentle hug and a breath of Love...
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So sorry to hear you're in pain. And that sciatic pain running all the way down the leg is real torture. You know how much we care about you and I hope you can take it a little easier or get some help so you really can take good care. :cuddle;
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Take care of yourself when you can :cuddle;
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You are the third person who I know who has had sciatica in the last week. It make me suspicious because a whole slew of people are coming down with back problems. I wonder what new wonder bug is attacking those areas? Or are we just wearing ourselves out quicker?
I have been in both roles lately of care giver and care taker (patient). Some days I do not know which way to jump around here. He needs me,I need him. I carry the groceries into the house now on grocery shopping days. I often have to stop the check out people and say "bag it light please." They give me funny looks. Then he cannot do the driveway up and down. Our drive way is fairly steep. He has almost fallen trying it. Last night I had blood pressure drop while we were out to dinner. All I wanted to do was get home and lie down. Of course he had to finish his dinner. I was almost asleep in the booth we were sitting in. I hate that losing your cool feeling.
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TW, I have missed you. And your words of peace and wisdom. Your description of the purple flowers and your grandson was so evocative, I could see him saying that!
Hopefully your doctor is going to be able to help you with your sciatica. Yes, doing more because
your SO cannot do it, will aggravate it. But what do you do? It has to be done.
I'm thinking of you, praying for you, sending more hugs your way. :cuddle; :cuddle; :grouphug; :grouphug;
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You're all so sweet. Thank you.
I had a spinal fusion 20 years ago and have managed to cope the best I can with it. The fusion caused arthritis around the injured area which happens to be by the sciatica nerve. Apparently, I have a compressed nerve. Ah, so that's why my leg has felt wooden, but with pain for the past couple of years. Now it's in my heel. In the morning, I can't bear weight and sometimes when I'm walking, things lock up, pain - like I've been shot, shooting through, and there I am. Standing on the street and wondering how I'm going to make it home.
When LL was bedridden, I asked for help from his doctors. When we went to see the man at the Ministry in regards to disability, I asked for a bus pass. The answer has always been no. So....after two years of increased suffering, I decided it was time to go to my doctor. She's a compassionate woman and keeps telling me how impressed she is with me in regards to all I have to deal with. It's nice to have some kind of ackowlegment.
I've been booked for an MRI to see if there is anything surgical that can be done but my doctor feels it's doubtful. I've had this for too long. So...she's given me a referral to the arthritis clinic. Hopefully, they can help. In the meantime, I've been given some pretty heavy duty pain killers. I don't like to take these but the constant and intense pain does wear me out.
LL's doctor told him he now has neropathy. Some days he can barely stand, he's also in a lot of pain. The cramps continue and not just in his legs, and of course, there's the fluctuating blood pressure. If I were to make a list of all the challenges we deal with, I would probably lay down and never get up. But there is an energy that moves through me, the energy and love of life.
There is so much to love - the flowers, my grandson, the leaves that form on the trees. There are robins that sing the most beautiful melodies, and baby squirrels that follow their mama as they run along the fence. There are the hearts of others who reach out and tell you they care, and strangers that smile as they pass you on the street. When I step out onto the balcony and say hello to the flowers each morning, I am greeted with gentle waves from the petals that reach for the light.
We also need to reach for the light. Reaching into our own hearts, into our breath, the essence of life reaches back to us with a warm embrace. With this embrace, we reach out to others, and through this, we are lifted out of darkened pain where a gentleness caresses us, and brings us into a remembrance of the true essence of our beings.
Inhale a breath and feel the essence of your being. Feel the love that you are. As we breathe together, another flower expands its petals to inhale the light of this day.
I hold all of you in my heart and send you a warm embrace.
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:cuddle;
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There is so much to love, TW. Beautiful words from a beautiful person.
I'm sorry you are in so much pain. I have sciatica problems, too, and go to a massage therapist who taught me some exercises that help. It hurts to do the exercises, but it really helps afterwards.
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I am sorry for all the pain you are in. I was glad to see your post. When you are gone for awhile, I worry. Sending you caring thoughts and love. :cuddle;
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Don't worry about me if I don't show up. If LL ends up in the hospital or something, I promise to let you guys know.
The pain has been really bad, so bad, I just couldn't focus on anything. Fortunately, I finally got smart and went to see my doctor. The medication is helping and I AM taking it easier. I'm also doing yoga at home and looking forward to having some one on one time at the arthritis clinic. From what I understand, they go through exercises with you. Oh, how I could use some pampering.
Myss Anne, I didn't respond to your post but I wanted to let you know I'm thinking of you and glad you're out of the hospital. I was sad to hear you had to stop PD. Oh yeah, I forgot to tell you: I gave my grandson a hug from you and he gave me three back! One for you, one for me, and an extra one for good luck.
Annabanana - how are you? I worry about you too. How's Randy's emotions these days?
Odat...I think of you and your mom and hope you are getting through this okay.
Has anyone heard from Joannie? The loss of Chuck and what she must be going through really touched me at a deep level. If you're reading this Joannie, please know my heart is with you.
And to all the names I didn't mention:
:grouphug; :grouphug; :grouphug;
ps. is it possible to get a heart icon?
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TW, being a caregiver is tough when the receiver is pushing me away from that role. Randy is still drinking a lot. He still works but his drinking is really starting to get to him. I worry.
It's hard to love someone so much that you can't help but be a caregiver...even if they don't want it. You see the great need, even if they deny it. He asked me to step back and watch, and I tried that for a while, but no, I can't do that anymore. The thing that helped me most was my anger at the situation. I just got mad as hell and told him that I choose LIFE!
whether he chooses it or not. Maybe I'll set an example and he'll start trying again. But I won't give up anymore.
I just wake up every morning and put my armor on. :boxing;
:cuddle; Love and hugs to you.
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I'm really sorry to hear this Anna. We all know Randy shouldn't be drinking, especially with Hep C, but what can you do? All you can do is take care of yourself, tell Randy how you feel, and hope he finds it within himself to do what he has to do to live.
I send you both a big hug. :grouphug;
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Thank you, TW.
So often, like others here, I come back to this thread and read your words and am so comforted.
You have a beautiful gift. Thank you for sharing it .
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TW, Thank you for the hug from your grandson, I cherish it! As for my battle, it's bearable. I can get through this. I may not like it, but I can do it. Thanks to you, and all our friends here, who encourage me, and cheer me on in my battle. I can only hope to do the same for you and everyone else here who needs it.
As Anna says, your words offer us comfort. You are needed here!!
:cuddle; :cuddle;
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Ah MyssAnne, thank you.
We are like the flowers growing in the garden and in pots on balconies and window sills. Like the flowers, we reach our petals outward and dance under another day of sun.
There are days when strong winds blow and days when more rain than we need, comes. There are also days when water is sparse. Extending our branches, we share the moisture held within our leaves so that others will not wilt.
Standing in the garden of life, we expand our petals to touch the essence of all around. To touch and encourage others during their season under the sun.
As we sway together in this beautiful garden, we listen to the songs of the robins. We watch the butterflies and ladybugs fly above us, and allow the wind to lead us into harmony with their song.
Our harmonies call the butterflies toward us, and as they sit ever so gently on the center of our being, we inhale the beauty of this moment.
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All I can say is, how beautiful, and how soothing those words are. Thank you TW. :grouphug;
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Your words just wash over me. Thank you for sharing your thoughts. :grouphug;
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Thanks Paris.
Unfortunately, I won't be able to return to this site. My darling spouse reacted to being labeled over an opinion he expressed and was quickly banned. Since we use the same computer, it's only a matter of time before neither one of will be able to sign on. I'm actually suprised I could log on but glad I could so that I could say goodbye.
Love to all of you.
:grouphug; :waving;
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TW, I hate to see you go. I hope it's not true. You've helped me so much, and others, too, I know.
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33 days and counting
:grouphug;
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Hope you guys are both well. I miss both of your posts LL and TW.
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It's almost three in the morning and I'm sitting here wondering what just happened. When I went to bed, I started laughing, thinking about Wayne and I both telling the nurses we both wanted Dr. House. Telling them we needed to be home by eight. Wayne telling me to make sure to go home, to make sure I taped the show. Asking what the nurses thought about House.
And then I remember seeing the heart monitor, hearing the constant beat from the alarm that tells them his heart rate was too low. The oxygen tube. The beeping reminding me of his dialysis machine.
All of a sudden I rememberd that Wayne needed to be hooked up. All of a sudden it became a concern. "Did you bring his supplies?" one doctor asked.
I was supposed to bring his machine, the bags of fluids, and all the other stuff that goes with it to the hospital? Go home, bring it back by bus?
Not to worry. They would call the renal unit and get them to get the supplies from the home dialysis unit. They promised they'd hook him up.
I think I'm writing in my sleep. I'm tired, yet awake, calm, but with a headache.
How is it that I'm not feeling afraid at all? I know this is serious. I'm trying to wrap my brain around this. I think it stopped taking information in when they said 'pacemaker.'
We didn't start by going to emergency. We went to the home dialysis clinic which is at the end of the renal ward. His doc wanted an EKG done, told us to go to the clinic, they'd bring the machine to him. I thought they'd just change a few meds, possibly stick him in the renal ward for the night to keep an eye on him. You know, make sure he's okay before sending him home.
We went to ER through the back way. No screaming ambulance, no waiting for hours in the waiting room, no preparation at all.
I told Wayne we were both too calm, that this was a sign that we've been there too many times. Like standing in line at the grocery store, or going in for more blood tests.
Walking down the hall to grab a cup of tea brought many memories back of times when I was terrified, times when I joked around when I should have cried. Times when I didn't know what was going on. And times when I wondered if he was going to live or die.
Like yesterday. And right now. I'm still not quite sure if they said he definately needed a pacemaker, or if they could flush the medications out, something to get his heart back in order. I don't know. I'm just trying to remember exactly everything that was said.
I don't know where Wayne is right now. They said they would send him upstairs. That's not the renal unit. I know that area. I know which way to go for coffee, to phone someone, the way to the garden.
I want to go to the kitchen, look over at the bed in the dining room, check the machine, listen to his breath.
My head is still spinning. My heart is calm.
Thank you for surrounding us with love.
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:grouphug; We are all right there with you.
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:grouphug; :cuddle; :cuddle; :grouphug; Thinking of you today TW. Best wishes to LL when you see him.
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So happy to see you with us. My caring thoughts and prayers are with you all the way. :grouphug;
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Sending hugs to both of you. :grouphug; :grouphug; Hang in there. :cuddle;
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I am so glad you are back with us during this. We have missed both of you and can't believe as soon as you are back, LL is in the hospital. But, maybe it is good timing because we are all here surrounding both of you with love and support. Please tell LL that we are worried about him and want him back home soon. Our love to both of you :grouphug;
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Thank you everyone. :grouphug;
They've found him a bed in the cardiac unit and have just done a shift change. The nurse told me to call back after 10. I'll let you know more once I know.
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Wayne's heart rate dropped to 25 and they're waiting for an O.R. to insert the pacemaker. The nurse said he's hanging on.
Thanks again.
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I am sending good thoughts and hope things are okay TW - please take care. :cuddle;
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Wife,
I'm hoping that pacemaker will make LL feel better immediately. One doctor told us that a too low heart rate was the worst feeling in the world (and, Marvin would agree). I'm sending you and LL love, prayers, and hugs. Let us know how it went.
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I hope things will go alright with him!
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He's still waiting for the surgery. It doesn't look like it's going to take place today. Anyway, he's resting, starving, thirsty, and waiting to get home. We also found out that one of his aorta's (?) is narrowing. The cardiologist said he will need open heart surgery within the next couple of years and that they'll be keeping a close eye on him. Now we can add a cardiologist to the list of doctors.
Petey - I told Wayne what you said about Marvin having a pacemaker and doing well with it. It was good for him (and me) to hear this.
Of course, they didn't tell me that this is a simple procedure and that they don't have to put him under, just a local. Of course, why relieve stress. :Kit n Stik;
Thanks again everyone. I'm going to see if I can now get a bit of sleep.
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They ended up doing the surgery last night as they couldn't wait until today. His heart rate went up to 84. Wow! Pacemakers work! I'll be picking him up at noon to bring him home. That's another wow. They sure don't keep them long but a hospital is never the best place to heal.
I'm not sure what to expect but I know he has to treat his arm like it's broken for two days. No using it at all, and then limited motion for six weeks. And since we've found out he has the other problem with his heart, I'll now have to educate myself on that. I should have been a doctor. Needing to have a pacemaker implanted is a blessing in disquise. It told us about the narrowing of his aorta.
Thanks again for your support.
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home is a good place. the place to find recovery. i'll be thinking about you. :grouphug;
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Glad you're home and now, let the healing begin!! :grouphug;
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He'll be home in a few hours. Thank Grammalady and Monrein.
I know I'm backtracking here but I guess I need to. Why didn't the staff at the hospital tell me the surgery was done with a local anestetic? When family members asked about this, I didn't know. In fact, I didn't even think about it. Of course, they were stressed and I needed to reassure everyone. Sometimes I think it's better to not say anything until it's all over but what if he didn't make it? It would then be a shock, plus, his kids would have been upset that I didn't keep them up to date with what was going on. I understand. I'd be the same if it was my parent.
Being a caregiver isn't always easy. You want to do the right thing for everyone involved. Sometimes, doing the right thing for the family members means not doing the right thing for yourself. Like not having to answer the phone a million times in a day, or having to call with updates.
I often wonder if others stop to think what it's like for the caregiver. If others stop to think how the caregiver is doing. Well, in my situation, I was lucky. I have my daughter. When I called from the hospital, she showed up. I didn't expect her to but there she was. She knew I'd be there for awhile and made sure I had food to eat. She even bought me chocolate.
Through all of this, my daughter has been a great support. She's old enough now to ask what Mom needs. I feel blessed. :cuddle;
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TW, no matter what you go through, your inner peace always shines through. In the midst of LL's surgery, you can take a moment to say you are blessed with a supportive daughter. You make others want to be better. You are doing a wonderful job as caregiver--it isn't an easy job. And I don't think others do give it much thought. If they did, it seems like they would find ways to help. When I was first diagnosed, friends rallied. It is old news now! But, I still have to make meals for my husband, clean, laundry, etc. I am rambling--sorry! I hope you both get some rest when he gets home. Wish I could stop by with a pot of soup and homemade bread. :cuddle; So glad to have you both back home with us! :grouphug;
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Paris, The warmth of your heart shines through.
Yep, this was a blessing in disquise. Needing a pacemaker led the doctors to look closer at Wayne's heart. They didn't know until this happened that he was born with a small aortic valve. Now, they'll be keeping a closer eye on his heart.
I am so grateful for my daughter who didn't ask what I needed, just stepped up to the plate and took the lead, to our community centre who called a cab for us and paid for it when I called to ask if there was anyone that could give us a ride to the hospital, and to our neighbour who took the bus to work today so that I could use his car to get Wayne home.
No matter what emergency we go through, beautiful people appear just when we need to give us a helping hand.
And to the the beautiful caring hearts here, thank you for your love and support. Sometimes, we have to walk a journey we'd rather not walk but when others walk beside us, we walk together in love and care.
May all of you be blessed in whatever ways you need.
:grouphug;
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Sometimes, we have to walk a journey we'd rather not walk but when others walk beside us, we walk together in love and care.
This is so true but I've never thought of it like this before. TW despite your own problems I hope you realise what hope and love you give to others. You are a beautiful lady, may you too be blessed in all you do. :cuddle;
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Thank you Rose. :cuddle;
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:flower; best wishes to your husband for a speedy recovery.
a :cuddle; for you,
and :cuddle; for your daughter, too!
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So important to have people care and share with you when walking down the path.
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TW, I just saw this. I am so glad LL is doing better, and that you have support there. I'll be thinking of you, and of LL, and praying that good things will happen from now on.
:cuddle;
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Pelagia :flower;
st789 :cuddle;
MyssAnne :-*
Even though I went through this latest emergency with a calm mind, I seem to be having a hard time bouncing back physically. I feel like I was knocked down by a speeding truck. Finding myself needing to release several breaths in a quickened way for a couple of days, I wondered if what I was experiencing, was shock. It wouldn't suprise me. It was a shock.
What us caregivers go through can be pretty intense at times. Because of this, we need to take care of ourselves. When we're tired, we need to rest. But how do we rest when we're the only ones caring for our loved ones?
What do we do to counterbalance the sorrow, the harshness of what we see and hear, and the exhaustion our own bodies sometimes find themselves in on this journey as caregivers?
I breathe. Deeply. I listen to the silence and the tree growing outside my window. I listen for the song of robins and dissolve into the laughter of my grandsons joy. I write and aim my camera at flowers growing in nearby gardens. Or at leaves changing with the season. I play my guitar, discuss recipes with my daughter, and laugh at another joke my partner shares.
I sing. I cook. I cry. Sometimes, I wake in the middle of the night to tears streaming down my face. Warm tears. Gently flowing tears. Tears that transforms sorrow into a deeper love.
Thank you.
I needed to share.
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You are doing the right things. I posted this not too long ago about the real toll the stress can take on the body:
http://ihatedialysis.com/forum/index.php?topic=10322.msg175759#msg175759
and this post to Rose1999 about a little book for caregivers that someone sent me when my husband had his nepnrectomies:
http://ihatedialysis.com/forum/index.php?topic=10230.msg177268#msg177268
maybe you'll find something new to try.
:cuddle;
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Thanks for the links pelagia. I forgot I had a lavender eye mask. Forgot how nice it feels too.
Things are back to normal for me. Just needed a few days few days to process what just happened and a slow walk in a fresh wind. I was craving something soft and as I walked, I put my hands in my pockets to find $2.25. This was enough to search for the right item in the shop up the street. I've had luck in the thrift store before and if my luck continued, I'd find what I needed. Sure enough. For $2, I found a super soft fleece jammie top that gives me the softest hug. And then my grandson came for a visit. Soft hugs, laughter, and love.
We are so blessed.
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My partner has been experiencing intense back pain ever since the pacemaker was implanted. We're thinking it might be from the hospital bed but he's had four sleeps in his own. Does anyone know if the back pain is related to his pacemaker or his heart?
Thanks
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don't know a thing about pacemakers, but am extremely sorry to hear you are still having problems.
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Thanks Grammalady. His back pain is easing. Looks like he pulled a muscle while in the hospital. The amazing thing is that he no longer has leg pain! This is so incredible because for three-and-a-half years now, he hasn't been able to get out much due to the problem with his legs. I guess the pacemaker is giving him better circulation. I don't know how his energy is for walking yet as we've yet to try but we will. Oh yes we will. Once he has his aorta valve replaced, he'll have more energy. Even though I'm not looking forward to this surgery, I am looking forward to seeing him with more energy.
For three-and-a-half years, I've dreamt of walking together in the park. Of going for a walk to the local coffee shop. Of getting on a bus together and heading to the beach.
Technology is amazing and I am so grateful we are living in these times.
Have a beautiful day everyone.
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The Wife :flower; :cuddle; :grouphug; :waving; I pray things will continue to go well. :bow;
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The Wife, as you know, I love your posts. I too, look forward to the day you can both walk through the park, or LL can play his drums. Thank you for reminding us to be grateful. :cuddle;
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TW, how are you and LL? I am a little worried about you both and hope to hear from you soon. Take care :grouphug;
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We're okay. Sorry for the worry Paris.
The latest emergency took a lot out of me, first shock, then exhaustion, and after a week of LL being home, I broke down and cried. The tears kept coming and no matter what I thought of, I couldn't get them to stop. The thought of LL needing open heart surgery is hard to take, especially since I know what they do to the body.
But the great news is that his legs are no longer in pain, except for the cramping that comes with dialysis, that is. For a couple of years, I've told the doctors, as has LL, but they kept ignoring it, or saying they didnt know why he was suffering so much, that he should be able to walk. Well, now we find out he has this underlying problem.
The pacemaker is working well. It's given him better circulation which means no more pain. Once he has the other heart surgery, he'll have more energy, which means he'll be able to do more.
What a ride this all is, eh?
Lots of love and gratitude for your caring heart.
:cuddle;
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You deserve a good cry! Glad to hear about LL's legs not hurting like they were. Take things easy and recover from the past few months. It certainly has been a wild ride for you two. :grouphug;
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Sometimes we just need a crying day, a day to release all we've taken in, and a day to honour what we go through. As a caregiver/wife, I can't help but hurt for my partner. I thought of the past three-and-a-half years, of all we've gone through, and remembered times before LL became ill.
To know he has more to go through grabs at my heart and squeezes it. To know that there is hope in him walking again, brings tears.
He used to be so active, so beautiful in his form of tai chi. It's been a long time and for the longest time I'd given up hope on things improving. I wondered why it was that other dialysis patients could get out to walk, even if just for a little, and my partner couldn't.
But brighter days can be ahead of us. Days where we can walk the two blocks together as we make our way to the park with our grandson. Days when we can catch a bus to find our way to the beach or our favorite park.
When I think of the open heart surgery that's ahead, I want to stay in bed. It's so hard to watch someone you love in pain but fortunately, I've experienced my own pain, severe, from a spinal fusion. Somehow, this helps me relate, helps me recognize the strength of the human body and spirit, and helps me visualize a full recovery with joyous moments once he's recovered. I know he won't get all of his energy back. And I know he still has the neropathy and osteoporosis pain to deal with, along with all of the other things. After all, he's still a dialysis patient. But even so, a time has come when we can both start to see in our future, some of what we loved before, return. I see it now, when he stands at the kitchen to make himself a sandwich, or long enough to wash a few dishes. I see it on his face when he walks from one room to the other. I see it now.
The past, present and future all come together in this moment. And in this moment, I give thanks for the sunlight I see.
Thank you for your caring heart Paris.
Love to you...
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I don't spend a lot of time at forums and it's quite normal for me to not show up for periods of time.
If I haven't posted for awhile and you're worried, you can go to my profile and pull my email address. I don't have to check here to see if I get an email....a notice comes to my address.
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:cuddle; Thank you for your peaceful insight. :cuddle;
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:cuddle;
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just stopping in and offering a :cuddle;
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Hello again.
Life has been fairly quiet, no more emergencies, except for when I broke my toe. It wasn't really an emergency but it had me crawling on all fours to get around. Since I couldn't put any weight on my foot at all (did a wishbone pull with my foot) my partner had to get up and get me ice, etc. However, he did manage to take out the garbage a couple of days. And then things got worse again. So much for the caregiver getting care while trying to rest her foot. And so much for thinking things were getting better for my partner.
When I needed help, I really saw just how hard it is on him to do little things. His pacemaker is working well but he's really low on energy. I guess that's to be expected since he is waiting to have open heart surgery, and of course, all the stuff that goes with dialysis.
Anyway, my question has to do with cramping. Yep, he still deals with it quite a bit. His latest blood test showed that his potassium level was on the high end of normal. They told him to cut back on potassium foods but if he doesn't eat something like a banana at night, his cramping is hell.
What do we do?
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Maybe stop the bananas and switch to apples?
I have read that vitamin E can help with leg cramps. Mustard Greens are
Renal friendly. Juggling electrolytes is hard. LL's body needs this, but he
can't have that...oh wait, he can eat that, but only 1/2 cup, but he needs
to eat it with......I wish I could help you as much as you've done for me :)
Hopefully, other members will contribute with more info.
In the meantime, best wishes
:grouphug;
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My neph used to prescribe Quinine pills for leg cramps but about a year ago he mentioned something about the government cracking down on the use of Quinine for purposes other than what it is supposed to be used for (i.e. Malaria)...something about needing to create a stockpile in the event of a mass outbreak. Not sure what if any of that was true but to compensate, I now drink some tonic water which contains Quinine each evening before bed. I ususally drink about 4 oz. and while it might just all be in my head, I don't seem to be having as much trouble with cramping as I did before.
I have also had bypass surgery but it was while I still had a functioning transplant. No doubt about it, it's a tough surgery but restoring good blood flow to the heart muscle should be really helpful with his energy levels. Best of luck to you and your partner.
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THanks for sharing. LL tried quinine but got sick from it so that's out but he's going to ask his doc about vitamen e. Last night, he cramped all night again and I just don't know what to do anymore.
I don't know how I've helped you breezysummerday but thanks for telling me that. Good to know that what I have to say has a positive effect.
All the best to all of you too. :grouphug;
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The river of life pulsates as I dance in gentle moving waters and streams. And I, in the silence of the morning, reach out to touch all I see before me.
I reach and hold, honour and love.
It is such a incredible feeling to taste the flavours of this stream, the flavours that moisten my lips like lemonade on a hot day, or tea sweetened with honey, or the juice of an orange as it trinkles down my chin.
Standing barefoot in the stream, I reach out and pick the ripened fruit.
Tasting life, I digest all of its flavours, and bow my head in gratitude for the meal I have been given.
In our findings, we are not afraid to question, to face and hold the mud mingled with the roots. We follow until we reach the place where the root touches the water, quenching our thirst.
I came home from work one morning. Stressed from Ray's new diagnosis and worrying about all the work I had missed. My head and body
hurting. My thoughts were all over the place. What was I going to do? Then I read the above quotes and just cried. All my stress lifted off
my shoulders. I am dancing in the river of life. Everything is going to be okay. And so it was from that point on, I became more
focused. And for that I thank you.
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I'm touched breezysummerday. Thank you. Sometimes, I just write. You know, let the words flow. To hear how my words have helped you makes me want to cry.
Our hearts connect. :grouphug;
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Dear TW, We love your words and they bring comfort to many of us. I have reread many of your posts. Hope you and LL have a nice holiday. :cuddle;
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I woke up somewhere after five. It was around the same time I woke before the phone rang eight years ago. A call to tell me that Mom passed away. As far as I was concerned, that day was not a good day to die. Didn't she know that Christmas was just around the corner? Didn't she know that it was my birthday the following day? She was sick for a long time. Couldn't she have died when there was nothing to celebrate, a different month perhaps?
It took me a long time to come to a place of acceptance and peace in regards to her passing. And a long time to get over the time of year she died.
I think of her now and how she came to a place of acceptance, how we can all find acceptance in the things we'd rather not accept. As I sit here this morning, I remember my mom. The sorrow has dissolved, warmth fills my heart.
I've come to a place of acceptance in regards to the passing of my mom, my partner's condition, the passing that I will also go through one day. Now to find acceptance with turning 50.
Tomorrow, I'll celebrate my birthday. It's a number that reminds me that my youth is over, that I can never turn back the clock and make things as they were. I sit and think about this and realize how fortunate I am. I think about all who haven't lived to see 50, and those who are under and over 50, and have to find acceptance with dialysis machines, fistula's, limited diets, cramping, and all that goes with end stage renal failure.
Time will march through the calender. The solstice will be upon us. The return of the light - my mom returning to light, buried eight years ago on the 21st of that year. Snow will fall and dissolve. The ticking clock will keep its rhythm. Christmas will come and go; a new year will greet us. Tulips will honour the earth again. Memories will appear out of nowhere. Laughter will be shared.
Another year. Another decade. Another feeling of gratitude for loved ones, for friendship, and for the gift we call life.
I wish all of you the best over the holidays and in the new year.
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:birthday;
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you put into words the feelings that i can't. thank you, happy holidays and god bless you.
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Thank you. Many of us have the holiday blues and feel alone with those sad feelings. You assure us that we are never alone and the sun will always come up. May you and LL have a peace filled holiday season. You are both loved here. :grouphug;
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Happy Birthday and all best wishes for a peaceful holiday and new year. :cuddle;
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Happy Birthday! :birthday;
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I have bells on my boots.
I love the bells, makes walking feel easier somehow. It's probably because I focus on the music instead of the pain. In fact, I was making up songs as I went along. One bell is one note, and the other, a third above. Not sure what the notes are but I could figure it out if I tried. Or I could ask my musician husband, Wayne.
Oh, my beautiful red quilted boots that go midcalf! With swede on the lower part, fleece on the inside, and bells on the zippers, I am reminded to sing. They were passed on to me by someone who bought them, then decided they didn't want them. I don't even think they were worn twice. Oh, lucky, lucky me!
At my birthday lunch, I had the most delicious soup at an East Indian Restaurant. Mulligwany with chicken and lentils. I'll be looking for a recipe for this one. That's for sure. When I arrived at the restaurant, my daughter took one look at me and said, "Aren't you supposed to be wearing purple?"
I pointed to my turtleneck. "Oh," I replied. "You told me to bring a bag for my presents." I pulled out the large duffle bag on wheels and opened it up. "Here we go, fill her up."
"Mom!" she laughed. "They're not that big!"
"Yeah, but they might be heavy."
She shook her head as she looked at my boots. "And you added bells I see."
"Fifty gives one the freedom to be a bit more crazy," I laughed.
"I don't really think you need permission."
"Probably not, but at fifty, there's more excuses."
As I tried on my new slippers and walked around to check out the fit, I swung my new deep RED scarf around my neck, and held my head high, and as we were heading out of the restaurant, she commented on my outfit again.
"If you think this is bad, wait until I'm sixty-five. I'm going to wear a quilted bathrobe for my coat."
:bandance;
Thank you everyone. Ringing my bells to bring you joy. :grouphug;
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:rofl; :clap; ........purrfect
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My hubby called me eccentric the other day. Oh well.... I told him to wait a few years!
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Would you like me to send you a couple of bells?
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I lost my wallet yesterday. Something I can't really afford to do either. We live on disability and the money lost was about a weeks worth of groceries. Fortuantely, only cash and my bank card was in this wallet. The rest of my id was in another wallet. And fortunately, we have a lot of food to last a month until we're paid again.
Losing my wallet was something else added to everything else and I became angry with myself. I wanted to do something for my hubby for Christmas, and now that's gone too. I wanted to be like others, just for one day, wrapping gifts and feeling the joy that giving brings.
Christmas...people buying gifts for each other, going here and there, celebrating in ways they celebrate. My partner is stuck inside.
We were invited to my son=in=laws mother's for Christmas Eve but with the unusual snowfall and his inability to get out without great effort, we won't be able to go. Again.
How do we get through this festive season when it feels anything but festive? How do we find comfort when we don't have money to buy those we love gifts? When everyone is frolicing out in the snow while our loved ones have to stay inside? It's the not the first year we've experienced having to put the normal activities of Christmas aside, but still, Christmas can sometimes be hard to get through.
Today marks eight years since we buried my mom. The third with dialysis a part of our home. It's also another soltice, the return of the light.
I celebrate this light in the loving hearts I've come to know. I celebrate it as snow falls outside my window before the sun comes up. It rings in the laughter of my grandson, and in the warmth of my daughter's voice. Light fills the room where I sit and brings memories of every person that has stepped up to share their caring heart. It expands, bringing joy where sorrow once existed. And joy, that my partner is here to sit with me while snow brings peace to this city.
I have been blessed to discover that Christmas isn't about the presents we buy or the fancy meals some eat. It isn't about standing in line ups at stores or handing over a gift we feel obliged to give. It's about love and loving in the best ways we can.
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Dear TW, I need to spend a long day with you. I told someone else today that I feel like I am drowning and no one is throwing a rope. I need calm words,kind deeds and no stress. I am the patient but I am also the caregiver. I do everything. Appts, bills, house, cooking and all that goes with a house and husband. I just want someone to take over, plan when family is getting together, plan the meal - just recognize that I am not the same person I was. No one hears me at night when I can't sleep or gets up when I am throwing up for hours and can't move because everything hurts so much. My husband means well. But I have always done everything and he doesn't quite know how to jump in and help. Even with a to do list. I understand his world has turned upside down also. I get tired of doing doctors visits alone. I am tired. Your words always help. I sit and read and then re-read them. Thank you for being the calm spot in the middle of the storm. Thank you for helping us all appreciate little things. Please keep writing. We all need you. And keep jingling those bells! The thought makes me smile! I really didn't mean to "share" so much--I am struggling today. Again, thank you. May you and LL have a quiet peace filled holiday. You are loved by many :cuddle; :cuddle;
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Joie,
I want to sent you a couple of bells.
Please pm me your address.
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Paris - I'm going to sit beside you, give you a big hug, and listen. And when we're done talking, I'm going to find a way to get you help. OH, I wish this were possible. You know, I do everything in this house too. And I'm not a dialysis patient. I have arthritis in my back around my spinal fusion and when I do too much, it causes my sciatica to act up. Sometimes, I just want to give up, but I have energy to push through, and do. Sometimes, I just want to let everything slide and if the dishes don't get done, so what.
Sometimes we think we've shared too much. Why is that? Why are we so afraid to tell others how we really feel? Do we think we have to put on a tough act in order for others to feel good, or are we afraid that someone will think we're complaining?
As women, we do a lot. We think about what needs to be done without lists or someone asking us to do what needs to be done. We step to the plate and make sure that our families have Christmas, even when we don't know how we're going to manage to pull it off. Sometimes, we wish others would do the same.
The loss of my wallet was a gift. It was a reminder that the greatest gift we can give each other is the gift of being present. We can also be present with ourselves. Yesterday I cooked all day long. While I was cooking, I thought of my mom. Since it was the anniversary of her burial, she was on my mind anyway. With this recognition, I realized that the best way to spend my day, was to spend it in the kitchen with her. I know she wasn't really here, but she was present. In my heart. And in my memories where she cooked, and laughed, and created in the kitchen with joy. When I was done, I lit a couple of candles and crawled into a nice bubblebath. I became present with myself.
Some of us aren't going to spend Christmas in the ways we would like. Some won't be able to get out of bed, while others, will not have enough to eat. Some will have plenty to eat but will be alone, while others will have a tree with many presents underneath, many family members by their sides, and quarrels about how they didn't get enough for Christmas.
However you're spending the holiday season, remember, it's not about how much you do or what you get. It's about love.
I send my love to all of you.
PS. Can you tell me how to pm you breezysummerday? I can't figure it out. Maybe later, after I've finished my coffee. One just never knows. :)
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Stay in the moment.......inhale and exhale.
ALIVE... :flower;
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You've got it st789!
And in this moment, I'm feeling like writing more.
I used to do Christmas like my mother taught me. I'd bake all sorts of things, make a huge dinner, and always have something to give and send each family member. Usually, something I made. My creations would take months to make but at the end, a smile was on my face.
This year, LL wanted turkey. Immediately, I thought of the cost and all of the work. The making of stuffing, the picking of the bones, the boiling and making soup afterward, the clean up, and the exhaustion I always feel at the end of it all.
This year, I told LL I wasn't going to make turkey but then I thought, "What if this is our last Christmas together?" Hopefully it's not, but one never knows. Still, I didn't want to do all the work. On Christmas day, I just want to rest, not have to cook, and enjoy the White Christmas we are going to have this year.
I decided to compromise and bought the turkey, telling myself the cost would be worth it, and he needs the protein. Not only did I lose my wallet when I returned from the store, I didn't buy the bread cubes for the stuffing. At nearly five dollars a bag, and a desire to do less, I honoured myself, along with what my hubby wanted.
I cooked the turkey on Saturday. Yesterday, I made stew and baked one simple dessert and when his daughter came over, we celebrated Christmas, on a different day. When Christmas day does arrive, I will be doing what I need. LL will have what he wants. And quiet will fill our home.
We all grow up with traditions. Traditions we feel we need to keep. Some of these things cause us stress and more work, and in the end, we can, if we allow ourselves, become resentful. To me, resent is not a part of the season.
I'm glad I did what I needed to do. I'm glad I said, "Making dressing is extra work and I don't want any more work. I'm tired!" It ended up being nearly as much work as if I'd had done it all at the same time but by pacing myself, the stress of pulling it all together at the same moment, was gone.
On Christmas day, I'll be able to come here, or go to my email and spend it in a way that brings me peace when LL is sleeping or watching tv.
Ah yes. This moment. This peace. This forum that allows me to say what I feel like saying. This moment where I connect with other hearts.
Blessings to all. :grouphug;
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Speaking of moments - I opened my curtains and noticed the sun shining on one of the trees covered with snow. Immediately, I pulled out my point and shoot digital, and caught the moment in a photo. As soon as I was done, the sun left. The moment, however, is still with me. If anyone can tell me how to post photos here, I would love to learn, and share my moment with you.
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I should be jumping in the shower and getting on with my day but I wanted to come back and spend a bit more time with Paris.
Paris, have you told your husband and family members how tired you are, and how you just aren't the same person anymore? Have you, or can you ask someone else to take over or at least help with the Christmas preparations?
I've told LL several times that he needs to tell me how he feels and not to worry about it sounding like a complaint. If I know his neropathy is acting up and his feet are in horrible pain, I will walk to the kitchen and get him the glass of water. Instead of muttering frustration when bending over and putting his dialysis bags in the garbage, tell me it hurts. Let me help.
I imagine a lot of us are guilty of not sharing what we are experiencing, be it pain, exhaustion, or any of the emotions us human beings feel. When LL does something that causes him too much pain, I want to know. Seeing him struggle adds more stress. I know he doesn't want to complain but when he shares what is in his heart, and tells me exactly how he feels physically, I don't feel so helpless. Knowing that getting that glass of water for him when it's so painful to walk, or sitting and listening to how he's so tired of dialysis brings me comfort because I have comforted him.
And Paris, it's okay to not do so much, to let things slide a bit. Believe me! I'm one who always likes to have everything clean and organized, and sometimes, I feel resentful because I don't have a caregiver to help with the things that cause me pain. When there is no one else to do what needs to be done, I do it, or I do less. Or I do it on a different day.
After I cooked yesterday, I soaked in the tub. Instead of getting dressed again, I wore my jammies for our Christmas dinner with LL's daughter. She didn't mind at all, and when I told her I was too tired to make a Christmas dinner and get it all together in one moment, and that we were having stew so that I could pace myself with the work, she didn't mind that either. Instead, she said, "This stew is sooooooo good. Thank you!"
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Well, I am here to thank you again, TW. I rearranged my schedule and priorities. The four quilts will not be finished; but the parts will be wrapped and given with love. My Mother pieced the tops while in the nursing home before she died. I know my children will appreciate them but they will have to understand why I didn't get them finished. The nine teddy bears I made for the grandkids are finished and wrapped. Today, my 7 yr old and 5 year old grandson and granddaughter spent the day with me. I took your lead and pulled out my Mother's old "fudge pot". It is the bottom half of an old double boiler that my Mom always made her fudge in, and nothing else. Zeke was fascinated with the whole process. He loved watching the sugar and milk boil and said it looked like a chocolate river when I poured it out. It really helped to center me and appreciate the moment. Mom made fudge at the oddest times. I remember her making a batch when we were watching TV during John Kennedy's funeral. She always made it when The Wizard of Oz was on. So, today the fourth generation scrapped the pot of all the yummy chocolate left behind. He called his Mommy and told her he was having fudge for lunch. (She didn't care, she also has memories of the fudge pot) I decided Christmas dinner will be a buffet and not a formal sit down dinner. My daughters are helping. They swept and dusted for me today. I feel better about life in general today. And it is because of your thoughts. Making fudge and cookies was the best way I could spend my day. Christmas cards will now say "Happy New Year" and I can do them at my leasure after Christmas Day. I have always said that I never ask anyone to work harder than I do, but now may be the time to change my motto. Oh, and I forgot to tell you that I spent the day in my pajamas!! The grandkids loved it! You never know how powerful your words can be, but yours helped me come to a turning point during this holiday season. :cuddle; :cuddle;
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Your words touched my heart so deeply, tears of love and gratitude sprung forth. I'm so glad to hear that you've adjusted your plans and when I read how much you've done, I was stunned. What you have taken the time to create, whether something is finished or not, will be treasured more than you realize.
What a special gift grandchildren are. When they are older and have their own children, they will tell the story of the Christmas they tasted the sweetness of your heart.
Have a beautiful Christmas Paris and thank YOU. :cuddle;
May the season bring you peace, joy, and lots and lots of love.
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TW..I feel like you helped a lot of us today in what you said.
Have a great week.
Ann
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Thank you G-ma. :cuddle;
I sit in my old computer chair with the stuffing popping out of the sides this Christmas Eve morning. It's a cozy chair, and as I take another sip of my coffee, I sit back and listen to the sound of rain.
It was supposed to snow again and it still might, but right now, a familiar sound returns. I think of my family who live in a different province, think of how they're all getting ready for their busy day, and of how there will be laughter, singing, and gathering around the tree. And then I think of those who can't get out this Christmas, or partake in many of the festivities of the season.
What I have learned by being the partner of a person living on dialysis brings me a gift that is greater than what I would find if I were to open a gift wrapped box. These gifts come in the form of finding patience, acceptance, appreciation, flexibility, and honour for those who have taught me what it really means to love.
I think of my partner who misses out on so much, and I wonder what I could give him that doesn't come in a box this Christmas. This journey isn't always an easy one. Sometimes, sadness overtakes me, and sometimes, I wonder how long we can live this way. But I sit here, in the silence of the morning, feeling grateful that he is with me to see another season. I sit with gratitude for the food we have to eat, the shelter that keeps us warm and safe, the machine that keeps my partner alive.
Snow covers the ground, slush makes the roads and sidewalks almost unbearable, and rain pounds down, dissolving bits of the past week's storms.
All of us have experienced the storms of doctor's visits, hospital stays, cancellation of plans, and nights of worry. So many of us have had to let go of what was, and find ways to feel joy when joy is the furthest thing from our minds.
The greatest joy I find comes when I give someone a gift. I've learned that a gift doesn't always have to come in a box wrapped in pretty red paper or decorated with a shiny bow. A gift could come in the act of sitting beside someone who is having a hard day physically, asking how they really are, or being quiet when quiet is necessary. It can be something as simple as a heartfelt hug, a few tender words, or the sharing of a meal made with love. It could be a joke, a playful moment, a night of watching movies, a kiss to say good-night. A kiss to say, "I'm glad you're here."
So many of you have touched my heart, have taught me what I needed to learn about dialysis and what it's really like. Some of you have given me the courage to go on when I felt all courage had left my heart. Even though I wish our meeting would have been made in a different way, I'm glad that you are here.
I wish all of you a beautiful Christmas.
You are loved.
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This was the most beautiful gift I received this Christmas...what you wrote. I think your partner would be thrilled and feel blessed to receive this also. You are so good with words.
Have a wonderful holiday.
Ann
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It's Christmas morning and I'm sitting here with soft red aromatherapy socks on my feet. My face, on the other hand, is hard, from the seaweed mask. I love it. I love how it's Christmas and I'm wearing red and green. My partner still sleeps while I pamper myself. After I shower, I'll put something nice on, prepare breakfast, make a pot of coffee and raise my cup in celebration of another Christmas together.
After the dishes are washed, I'll get ready to go to my daughters. We'll have a quiet lunch together and after I play with my grandson, I will put him to sleep for his afternoon nap. But first, I will read him a story or two about Curious George.
Ahhh...Christmas...a peaceful day... a heart filled with peace.
:grouphug;
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You words were the best gift I have gotten for a long time. I shared some of your thoughts with my daughters because they could tell I was dealing with stress better the past few days. So, I read them the words that gave me strength to simplify and breath during the holidays. How fortunate we are to have you in our lives and to read your beautiful words. I have kept you close to me the past few days. :cuddle;
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Thank you Paris. :cuddle;
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“How was your Christmas with your family?’ I asked as I poured the tea.
“I gave everyone a present and no one gave me a present back. Not even my mom.”
“Oh.” I paused.
“I know you’re not supposed to give to get something back but she could have at least given me a pair of socks. It didn’t even feel like Christmas,” she sighed. “There wasn’t any magic.”
Magic. A tree covered in decorations and lights. Presents wrapped under the tree. Opening a gift you wanted. Expectation. Anticipation. Show me how much you love me.
Our society has made Christmas into one of consumerism. We see it during commercials on TV, ads in newspapers, or sale signs on the windows of stores. We see it when others carry their shopping bags, hear about it through discussions of vacation plans, and are reminded of it every time we see a Santa Suit. For some, Christmas is about the birth of Christ. For others, it’s about the presents, the food, the gathering of family and friends. Whatever way Christmas is celebrated, there are expectations of how this day should be.
It’s taken me a few years to realize that the spirit of the season doesn’t have to depend on a tree or presents wrapped in fancy paper. This doesn’t mean that I don’t like giving or receiving gifts. In fact, letting go of my expectations has led me to a deeper appreciation and understanding of what a gift truly is.
My grandson is a gift in my life. And on Christmas day I wanted to give him a gift. As I was reading a story from the book I gave him, he turned toward me, threw his arms around my neck, and gave me a kiss on the cheek. Another book and a few pages later, he did the same thing. At the age of two, it didn’t matter to him whether I was reading a book I gave him, or a book from the library. What mattered was the moment we shared. It was that moment, combined with previous moments that opened my heart to the real magic of Christmas.
The magic of Christmas spins through words in a book. It weaves its way into the softness of a pair of socks, and dances in the flames of candles that add to the atmosphere of a nurturing bath. It glides in the warmth of a cup of tea, in the aroma of a shared meal, and captures in heartfelt hugs. It finds its way through heart to heart conversations, laughter, and tears.
The real magic of Christmas can be found wherever there is love.
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Well said TW! :thumbup;
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Amen to that! :grouphug;
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My partner needs to have his chest busted and his arotic valve replaced. When he went to the pacemaker clinic yesterday, he was told this surgery won't take place until it's a life and death situation. When he starts getting dizzy or passing out, I'm to call the ambulance. And then they'll try to save his life.
This is our healthcare in Canada. We don't have the same problems as in the States but we do have a long wait list. To me, waiting to have this done is like not doing anything when you have weak breaks in your car. You take it to the mechanic and he tells you your brakes are failing. Instead of repairing them before they completely fail, the mechanic tells you to wait until they're no longer doing their job. While going downhill, see if you can get to the shop. They'll repair it then.
So basically, we know that we're going to have another life and death situation. Another, let's see if we can beat the clock event. It could be in a year or three years. No one really knows. I wonder if they know the answer to this question: If he wasn't a dialysis patient, would they get him in quicker? What about if he was a politician? Would there be space in the operating room then? I could ask all kinds of questions but will it make a difference in how or when things are done?
Knowing all of this reminds me of the importance of being where we are, now. Anything can happen. It can be something good, something bad, or something we can't even imagine. I've already learned that the best way to keep peace in my heart is to accept how things are, and to be in this day instead of fearing the future.
We've been through so much. We're going to go through even more. I take a sip of my coffee and listen to the ambulance that speeds by. The siren softens as a breeze blows through my open window. Our cat curls up on my bed. My partner sleeps peacefully.
The sun will rise soon and when my partner gets up, I'll heat up the kettle again. As he unhooks from the machine and takes his blood pressure and weight, I'll measure the coffee, open the curtains, and listen for the robin that sings on the tree outside our window.
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Wow this is a sad read. Hope all goes WELL when the time comes.
And yes if he was a politician or someone of importance( to others then his family) he would be on the table now im sure.
Not sure what you meant but not having the same problems as the states does?
Needless best of luck to you both.
P&K
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Thanks Paul.Karen.
I understand there are insurance companies in the States and that there are costs to the patient. If someone needs something and our medical system recogniizes it, you don't need approval from an insurance company. The doctor's word is good enough. Even so, there is the wait, like I mentioned above.
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You have had more than your fair share of life's challenges and yet you continue to handle them with grace. Here's hoping 2009 brings better health for LL and more of the simple joys of living your way. :cuddle;
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Hi TW. I too am Canadian and the situation you describe sounds very bizarre to me. I would have a tough time accepting that answer and I would become a very squeaky wheel. I'd contact my Member of Parliament, or a newspaper or television reporter, a social worker to advocate for me, I'd change doctors if necessary. This is just my opinion but I don't think that acceptance is the best course in this case. Even if you had to go somewhere else in your province for the surgery, waiting for cardiac failure to actually happen sounds like incompetence to me unless there are other details that I've missed.
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I don't know what province you're in Monrein; in this province, the waitlists are quite long. I will ask questions. You mentioned cardiac arrest. i didn't say they would wait until he was in cardiac arrest but you raise a good point. It leads me needing to ask this question: When my partner starts getting dizzy or passes out, what exactly does this mean?" When he had his pacemaker inserted, he first had dizziness. Eventually he started blacking out. He wasn't in cardiac arrest but I guess when you're blacking out, it's not far away. The pacemaker situation happened so quickly, we didn't have time to prepare ahead. It took 28 hours from the time they discovered he needed a pacemaker until the time it was inserted. The surgeon had to stay overtime and get my partner in that night. They couldn't wait any longer.
For some reason, this seems the same. If they wait until the last moment and there's no operating room, then what?
I'll need to make a list of questions.
As far as incompetence goes, this does exist.
In the meantime, tomorrow is a brand new year.
Happy New Year Everyone.
:bandance; :bandance; :bandance;
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Acceptance means not being in denial about how things are. Acceptance of something doesn't mean you don't take action.
Just wanted to make that clear.
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I really hope TW that you don't think I'm suggesting you're in denial. Not at all. There's also a difference between cardiac arrest and heart failure. My thinking is simply that if there's something that can be done, it ought to be done. If there isn't then acceptance is absolutely essential and there's no question that you and LL have had to accept a whole lot of downturns in your present situation.
I live in Toronto, Ontario and wait lists are of course an issue.
I enclose this link as a starting point (not that I think Wikipedia is the most trusted source of info) about heart failure.
http://en.wikipedia.org/wiki/Heart_failure
:cuddle; and a Happy New Year. :cuddle;
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Not at all Monrein. I've had the experience of others not understanding what I meant by acceptance in the past. That's why I clarified. Just to be sure. I agree with you, if somethng can be done, it should be. The problem is the doctors don't talk to me. I even wrote his kidney doctor an email and told him about my concerns in regards to LL's heart. He didn't respond to me but did tell LL I was right when he had his three month meeting. I wish they'd realize that I'm a valuable part of their medical team. I live with him, take care of him, and know when somethng is off.
Thanks for the link. I'll check it out.
Oh, and it is the first day of the year.
Let's all have a good one!
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When LL had a reaction to the interferon for the Hep C and nearly died from a gut bleed on the sixth week of a year long treatment, they stopped it. For months they pushed the drug but when they discovered that he's someone who can't take it, they stopped talking about Hep C. What was once so important to them just disappeared and now we're left on our own.
When his heart rate dropped in half, he called the home dialysis unit in the hospital to ask if he should cut his heart pill in half. They thought that was a good idea but it kept dropping, even after he weaned himself off the drug per their orders. When I called back on the third or forth time and told one nurse his heart rate was still dropping, the nurse told me that athletes often have a lowered heart rate. Hello? Forget about calling his doctor. He doesn't call back...you have to go through the nurse.
When we've brought up his leg pain and inability to walk much, they don't know. When they did an echo, they didn't look closely enough. It wasn't until his heart rate dropped that they discovered he needs his aortic valve replaced. I'm not a doctor but if you're doing tests to check out someone's heart, shouldn't you look closely at the results?
When LL asked his doc about how Hep C patients need to take interferon before a transplant but he can't take it, and that that the transplant drugs would flare up his Hep C, and it would probably kill him, his doc said, "You'd think so."
When LL asked about his blood pressure, his doc said they really don't know what a dialysis patient's blood pressure should be.
After I voiced my opinion about certain things, LL's fistula quit and they didn't sedate him. After being tortured, the doctor told him that he was quite tough. That most people get sedated. We didn't even know they were going to be repairing it, we thought they were just going to look at it and make another appointment to fix it. Why didn't they tell us that he could be sedated? More importantly, why didn't they just sedate him? Was this a cost saving decision or was it because I spoke up to the social worker?
Another time, LL went to meet with his kidney care team, and when his doc showed up, he told LL he was busy, and only had ten minutes.
Next.
They don't tell us what we need to know unless we ask questions. Sometimes we don't know what to ask and sometimes we research, and they don't know how to answer. This can be very frustrating at times.
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The past is over.
I inhale deeply, exhale, and release.
Today is a new day. A new year.
I inhale again.
As I exhale, I let go of any future worry and allow each moment to bring what I need to walk through whatever takes place.
I breathe and feel this moment of peace.
Ahhhh....
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I think you and Lola should get together and bash a few medicos heads in this year! :Kit n Stik; :Kit n Stik;
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:rofl;
They say the pen is mightier than the sword. The pen is the sword.
:bandance;
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Hi the wife. I am in Newfoundland and there was a story on the CBC news a couple of nights ago about a man who needed heart surgery. He was going to have to wait a long time as well. He went to the media. Guess what he had his heart surgery before Christmas. Maybe you should try going to the media. What part of Canada are you in?? We have really long waiting lists here in Newfoundland.
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We're in BC.
I need to talk to my partner and ask him a few questions to clarify exactly what 1- 3 years means. Does it mean that's when his heart will need the surgery or is 1-3 years the length of the waiting list? Once I know that, then I can find out why they wait until it's life or death.
Thanks everyone. I'm going to make a list of questions and give them to my partner to ask his doctor.
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I couldn't wait until tomorrow so I asked. It's one to three years before he needs the surgery and once he becomes short of breath, dizzy, etc, they will do it. When I asked him about the life or death part, he said he didn't use those words. I'm sure he did.
By sharing with all of you, I've come to realize that I'm still not over his pacemaker incident. That was tramatic for me and I don't want to go through another event like that again. It wasn't the first sudden twist in this roller coaster ride of illness and it won't be the last. As much as I would like to know exactly what to expect and when to expect it, and to control it, I can't.
My mom died of heart failure. She needed surgery but she wasn't a good candidate for a various of reasons. I didn't think to ask for a second opinion. When her kidneys failed, dialysis wasn't mentioned and it didn't cross my mind. As I look back, I wonder if I could have done more or if it would have been her time no matter what I did or didn't do.
With the recent anniversary of her passing and the recent pacemaker implant and the discovery that an arotic valve replacement will be necessary for my partner, it's no wonder I'm feeling the way I do. I apologize if I've caused any of you stress.
I need to stay in this moment, and to accept and allow myself to feel what it is I am feeling.
I need to breathe...
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Told you the pen is the sword. It slices until we find our truth.
Thank you again.
:cuddle;
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Hi Miss Joie!
My mom passed from heart failure too. It's been 8 years since her passing and the Holidays are still
not the same. We used to gather at Mom's house. Everybody laughing and singing. My mom and
my aunt taking turns playing the piano and the accordion, family members and friends singing
Christmas carols. Wonderful memories. And speaking of accordions....I came across a picture of
a certain someone playing one ;) Made me smile when I saw it.
I didn't get to spend any quality time with my family this Holiday Season. Me and my youngest daughter
spend the time suffering from the flu. Ray made us some chicken soup. Nice and hot.
So, I called my grandson and told him I wouldn't be able to see him. It didn't matter. He was
chattering so much and so loud on the phone. I asked him to slow down since my ears hurt from
the flu. My 'mimi' was reading! :cheer: My daughter says it was like he just woke up
one morning and just started to read...everything. How cool is that!
Please give Wayne a kiss on the cheek from me. I think about you guys often and am so grateful
for your peaceful thoughts....deborah
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Deborah,
We have something else in common. Mom's passing in the same year. I feel at peace with you and fondly remember the joy. Accordion, eh? That's amazing.
I gave Wayne a kiss on the cheek and told him it from you. He had a really bad couple of nights with the cramping and the kiss helped pick up his sprits.
It's very cool that your mimi is reading! Can you tell me more about this?
It's a better day today, the rain is hammering everything it touches, and I'm going to have a visit with my grandson. :clap;
Have a great day and when I can, I'll get back here.
:cuddle; :flower;
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Well, you've probably noticed the thread Wayne posted on Off Topic. Yep, that's us, dusting off the keys, pulling down the drums, getting into the groove again.
Receiving the webcam couldn't have come at a better time. After two nights of severe cramps, Wayne was ready to pull the plug. With a future heart surgery in the mix, we weren't feeling very hopeful. What does this mean in regards to where he is on the transplant list? Does it mean he won't be eligible for one before he has the heart surgery? You know the questions. And if you're like us, you get tired of asking them.
But when the UPS man arrived with a suprise package, we both knew what we had to do. The books are out, the keys are dusted off, the dishes can wait. We get to play for an audience again. :2thumbsup;
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(http://i413.photobucket.com/albums/pp218/joie_novak/fromdigital243.jpg)
Which one did she say to press? I can't remember.
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(http://i413.photobucket.com/albums/pp218/joie_novak/fromdigital181.jpg)
Find beauty in every season.
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(http://i413.photobucket.com/albums/pp218/joie_novak/fromdigital145.jpg)
Moments pass us by as quickly as starlings in flight. We can pause and capture the moment or let it slip by, leaving us forever untouched. Life brings tragedy, pain, and difficulty. It also brings beauty. In beauty, we find moments of grace. These moments, though temporary, endure in our hearts forever. They carry us through the difficult days, the days when our lives appear to be crashing down before us.
Whatever you are going through, stop and look around. Inhale the warmth of a sunny day, the scent of an opened rose, the sparkle of a peacock spreading his feathers, and then remember. Remember grace. Remember, nothing remains the same. Moments string themselves together like beads, contained only by the clasp in our hearts. We collect plastic, broken, and chipped beads. We also collect pearls.
Inhale the scent of the sea, kind words of a stranger, a silent sunset, a gentle rain, a daffodil swaying in the breeze. Inhale, a moment of grace.
copyright J. Novak
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:ukflag; I took this photo on my mobil so it's not very good, but by the time I had rushed home and got my good camera the sun had gone down. It was taken of the life boat house in Selsey West Sussex UK. on about the 29th Dec.2008 just a 10 minute walk from me.
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woweeeeeeeeeeeeee
Great to hear from ya mob
looks bloody great
but a bit too cold for me
I'm in the top end of oz
lots of love mates :grouphug;
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Great shot John and Yvonne! Love the light!
The snow is gone from our freak snow storm and we're back to rain. That's what our winter's our like. Rain, rain, and more rain. I guess that's to be expected. Even though we live in the city, we're still in a rainforest area.
When I get a chance, I'll see if I can scan some photos from when I was using my 35 mm. Better camera, nicer shots. Just not sure how they'll load into photobucket. They're panoramic instead of your regular 4x6. Guess I'll just have to test it out and see how it works out.
One day I hope to have a SRL digital.
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Has anyone heard from MyssAnne?
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How are you? Hope all is going okay. Are we going to get another one of the performance videos anytime soon. I thought it was great. :cuddle;
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Hello again. We're okay. Dealing with coming to terms with the heart surgery but have spoken to one of the nurses and asked why wait until it's an emergency. I brought up a lot of points and the kidney doc is going to talk to the cardiologist to see if they can move up the surgery. He also moved up the echo that he was going to take in the fall to March.
Wayne was having shortage of breath and I asked the nurse how we can tell if it's fluid on the lungs or his heart. They took a chest x-ray and another ekg. It was fluid. After adjusting the machine and the type of bags, he's doing better. Low energy and still cramping.
Well, the nurse decided he needed quinine for the cramps. I guess she talked to his doc. What gets me is that they prescribed it once before and the medication made him sick. When told this, the nurse said, "Well, we're going to prescribe it again." Duh.
It was delivered but he's not taking it and I can't say much because when I do, the medical staff get defensive and take it out on Wayne.
What's a caregiver to do?
Here's another song we recorded while Wayne had energy. Enjoy and thanks for asking about us.
http://www.youtube.com/watch?v=jvJJrwWoTqE&feature=channel_page
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Love the video! :clap;
I guess it's already been a long winter for you. Hope it gets brighter soon. :cuddle;
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:yahoo; The Wife. That's was sooooooo cool. Thank you for sharing and I pray things are getting better. :cuddle;
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You know how it goes...up, down, round and round...
But guess what I saw yesterday? Pink flowers starting to bloom on a couple of trees.
Spring is on its way!
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:cuddle; Isn't it amazing that flowers starting to bloom can make you feel better? I cleaned out some flower beds this morning and was surprised at just how much stuff is trying to come up. Take care of yourself. :cuddle;
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A good dose of sunshine and some pretty flowers do wonders for the soul. Oh, the long cloudy winter we've had...it gets tiring after awhile but we find sunshine in other ways.
Number one sunshine in my life = grandson. :2thumbsup;
I usually go over to my daughters once a week. While she's making dinner, I play with my boy. Yesterday, he was asleep when I arrived. It was time to wake him up so I laid beside him on his bed and started to sing. Since I've sang to him from birth, he knows who it is before he opens his eyes. He's a grumpy boy when he wakes up but when I sing, he jumps out of bed. "Gramma? You gramma?" he asks rubbing his eyes.
After going to the potty (he's doing well with the training) he asks me another question. "Gramma, do you love kisses?"
"I love kisses," I reply.
And I get lots of them!
Ah yes, sweet sunshine. And flowers that are starting to bloom.
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:flower;
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We all know what it's like to watch our spouse's in pain. And we all know how hard it is on us. One thing I do is try to find something everyday that brings me joy. You've heard me speak of the robin. When she wakes me up in the morning, or I hear her singing in the afternoon, I can't help but smile. I wanted to share one of my joys with you. Here she is, sitting on the tree outside our living room window.
(http://i413.photobucket.com/albums/pp218/joie_novak/fromdigital341.jpg)
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She doesn't look like much in the picture. I could post it in a larger size but it'll be too big.
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She looks wonderful to me. I am looking forward to seeing my first robin of the spring. :cuddle;
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Hey, get offa my lawn, er, my snow covered lawn!!
(http://i44.tinypic.com/2po5tnd.jpg)
Still winter up here.....sigh
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Now that's a lot bigger than a robin! Wow! Snow is nice too, better than rain, rain, rain, sometimes.
Several years back I was camping with a group of people in Jasper, Alberta. The rockies. We all decided to take the canoe and go to the other side of the lake. When it was my turn, a large moose swam out and came close to the boat. Holy smokes! He was so close, I could see the eye lashes on his eyes.
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That was the south end of a north bound moose in your yard! :rofl;
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Summertime...
Preety sure it's the same guy
(http://i41.tinypic.com/9r4kur.jpg)
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Great shot! Are they friendly?
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I've seen many moose on wilderness canoe trips but I paddle away from them because they can be very dangerous. They can look innocuous, friendly,whatever then charge you and kill you. Mostly they're timid and will run away but if it's rutting season, not so much. They are also fantastic swimmers and can swim right up to you, nice and calm then charge and dump you in the water. Wild is wild.
We once saw a wolf follow a momma moose with two calves out onto the river's beach (Nahanni River, Northwest Territories) trying to grab one of the calves. Suddenly the wolf noticed us standing there and he dashed into the river and swam across a seriously swift current. Not sure who was the most surprised by this strange scene...us, the moose or the wolf.
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I've always been afraid of moose and when that big guy swam up to me when I was in the canoe, I held perfectly still. I don't even think I took a breath until he went away. It was, however, amazing to get that close to one.
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No, not friendly at all. Some are so tormented by kids,
they become very aggressive. I have a field backing my
yard, the moose stroll on by most every day. Stopped taking
pictures of them awhile ago, but this one was (in the snow pic)
was bucking for some reason and I caught the action too late.
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wow, very cool moose pictures.
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I'm surprised that kids would even torment such a large wild animal. Whoa. But then again, kids will be kids.
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Oh no, kids are kids, but kids need to be taught not to be mean to living creatures, human or not. I think an angry moose would teach them a good lesson, don't you?
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Oh, I'm sure kids would learn a good lesson if the moose turned on them. Sometimes, you can teach kids things and they won't listen until they learn for themselves! I'd hate to see a kid or a moose hurt.
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Is there a mountain I can stand ontop of and scream?
Oh, those cramps. Wayne said he had the worse ones ever. Even though he became ill and blacked out from the previous quinine prescription, he took one last night. Since he was in bed, he didn't pass out but he's still geting a bit of cramping.
And then there's the gout, the other pains, the nausea....
I don't know how he deals with this on a day to day basis, how any of you who are dialysis paitents deal with it. Watching it, waking up to screams....it's plain torture.
And so I breathe. I allow the tears of helplessness to flow down my face, the tears that come from watching my loved one suffer.
I take another breath and listen to the robin as she sings outside my window. The curtains are open and there is a blue sky. Oh, blue sky. How good to see you. How good it is to see the light dancing on the branches of the cedars, on the fabric of the curtains...
I think I'll just sit here for a moment and take the beauty of this day in.
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:rant;
I think Wayne's having a reaction to the quinine. I checked the net for side effects and they match. He's freezing but his forehead is warm. He's having chest pains and won't let me call the clinic. Says they'll make it worse, that they're just trying to kill him, that if I complain they'll take it out on him. And he's right. Every time we talk to them, they do make it worse!
What the hell is wrong with these people?! How many friggen times do we have to tell them things before they listen? I'm so pissed right now I feel like getting on the bus, taking the pills, and throwing it at them.
What am I supposed to do?
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From what I found on the net, quinine has been pulled by FDA in the States. Why hasn't the same been done in Canada?
What do you do when you can't trust the medical staff? Who do you turn to? I could call his neph but that's useless.
It was only one pill. Hopefully, this will pass.
I don't like coming here in such a state but right now, here is the only place there is.
Breathing...
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With chest pains, you should go to the clinic.
Every documentation can lead to something.
Please go to the clinic.
(here in alaska, you practically have to have
stage 5 cancer to get medical attention at
the clinic I go to)
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He said his cramps were so bad he felt like his foot was breaking in half. He had to take the pill. I think they need to readjust the machine again.
Something is wrong with a system that takes the caregivers concerns out on the patient. Very very wrong. If he dies from their actions, there is going to be hell to pay.
Warrior woman rises.
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He won't go. Stubborn as a moose, I tell ya. Says if he dies, good. He's tired of this.
He took the pill at 2 am and is hoping it will pass through. He already has a pacemaker...
Some things are out of my control. If he passes out, I'm calling the ambulance.
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The cold is passing....
I'll keep a close eye on him.
It's tough being in the middle. Can't call because he insists I don't. Can't talk to the medical staff because they get all defensive.
What a life.
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TW, I still think you should still call them and let them know how Wayne has reacted to the one pill. Tell them you feel angry (because he's reacted badly before), tell them you feel unheard even though they say they're listening and tell them that above all you feel worried about what might happen to Wayne.
I know it feels as if they punish you when you complain but I don't think that's actually what's happening. It's more likely that they don't really know what to do either but chest pains they have to take seriously.
Ask if tonic water (much less quinine, like barely any) would be a better option.
Tell Wayne that if something happens to him you're left holding the pieces and you can't live with that. It's not fair for him to leave you in this spot although I understand for sure his reluctance to call or let you call. Helpless is just the worst feeling. I'm sending you hugs and breathing reminders and please know that whatever you decide to do, we're here for you. :grouphug;
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Thanks Monrein.
He says the inadvertantly take it out on him when I call. Says they'll do anything just to shut me up becasue they don't like feeling critized. Is this about their feelings or his health? I think you're right about them not knowing what to do. I was thinking about calling the social worker but she's got to be the most useless person there. I think I'll give it a bit of time....things seem to be easing. And then I'll talk to Wayne again. He has to let them know about this reaction.
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I can understand his reluctancy. It seems that every time he goes in when it's not a scheduled appointment, they drag him through the mill, or put him in the hospital, which he absolutely hates. Or give him more drugs that make him sick, etc.
As a caregiver and wife, I just don't know what to do sometimes. Do I upset him and cause him more stress by doing what I feel needs to be done, or do I step back and allow him to make his own decisions?
When he's in a better place to hear me, I will share my concerns, and my feelings about what it's like to be a caregiver. And about how scared I am when I feel I can't do anything to help.
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I'm going to call the clinic. As his caregiver, I need to do this.
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Every documentation can lead to something.
Good going Joie, give them a call.
Arghhhh....what a way to start the morning
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I called. They're on it. The nurse is going to see if his neph is on the ward. I also informed her that quinine has been pulled in the States. They didn't know this. She said he's lost a lot of weight since June and has now put that he's had a reaction to quinine on the computer. They're going to call back.
Thanks for being here. I'll get back...
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The nurse can't find the doc. She's faxing his office. Told me to get him to stop taking this other prescription and just take tums. Figure that's what's causing his nausea. Told me the doc didn't write anything on his chart about gout either. OH, that's nice. :sarcasm; apparently they don't record everything. No wonder the nurses are confused. The doc doesn't let them in on everything. Is this to cover his ass? His heart was low, now high...they're not saying what to do....took his heart pill, it's slowly going back to normal. I'm keeping a close eye on him and taking his blood pressure, and checking his pulse. The nurse also told me his sodium level is too low and he needs to cut back on fluids. The nutritionist is going to call me. He's gotten worse since they had him change numbers on the machine. The nurse said she doesn't want to adjust it back to what it was...try other things first. Yep, keep trying until you kill him. :sarcasm;
I think when you have a bad liver from hep C, kidney failure, and a bad heart, they really don't know what to do. Pulling straws, pulling hair...
Don't mind me. I'm a bit stressed but thankfully, all of you understand what this is like.
Happy Monday everyone.
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TW, my my what a time you are having. You dont need all this stress, nor does Wayne. I feel for you. AS caregiver you have to stay on top of things, either you or the pt. You can't rely on the drs to know everything. I noticed that in the hospital. I had to remind drs I was on a risk protocol, and also had to prevent a nurse from giving me insulin. Luckily I was lucid and knew my own numbers cuz she got it mixed up when the teck did my husbands blood sugar and they wrote that on my chart! I don't have high BS, he does... any way, my heart is with you. Many hugs and hope you all pull through this soon.
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You got that right. They don't know everything. I called his cardiologist's office. Receptionist said to go and see his family doc. Right. If the specialists don't know what to do, how is a gp? Wayne just wants to sleep it off. There seems to be a slow improvement so I'll respect his wishes. I can understand not wanting to wait in ER for twelve hours. He's so tired of this.
I guess today is just going to be one of those days.
I'm going to go and take out the garbage now. Breathe in some fresh air and stand under the blue sky for a couple of minutes.
Thanks for the support everyone. It's appreciated.
Hugs to all of you...
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TW--
Just came on line and reading your posts of the day....didn't realize until the last one that my jaw was hurting from clenching my teeth! What a day you have been having. Praying that all works out for you and Wayne.....that blue sky....enjoy it.
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As I was reading your post Wenchie, I realized I was clenching my jaw!
Well, he's up, gone to the bathroom a couple of times. Blood pressure and heart rate are still slowly improving but they're improving. It seems to be moving through...
Scary stuff!
DO NOT TAKE QUININE!!!
No wonder he doesn't want to tell them when he's having problems. When he does, they prescribe something like this.
We were just wondering if there's an FDA here in Canada. Someone needs to be notified and I doubt the doctors will do it.
Okay...let's breathe...
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Ok. Things are better. He's up, he's eaten....and I've spent nearly two hours today on the phone with a couple of women from the dialysis team. They noticed that things changed when he had his pacemaker implanted. Now they need to figure out the right amount of dialysis but we're working together.
Ok. I'll still be a caregiver. They told me I was doing a really good job.
Now I can really breathe.
Thank you for being here and helping me get through this day.
:grouphug; :thx; :guitar:
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I was already to go out and run in the street screaming for you, since you cannot do it yourself! Glad things are showing some light today!
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It seems that your days are getting tougher. I know you must be consumed by worry sometimes. Try to take it a day at a time (although maybe you can toss some days like this one) You are doing the right thing by keeping on top of it. :cuddle;
Unfortunately, when you think of how many diseases there are, how many drugs there are and how many possible side effects to drugs there are, you realize that any sick person is actually an experiment. Two years ago my dad was seeing four different doctors at the same time, taking all kinds of drugs for all different symptoms and not getting better. Then he had a stroke and they discovered that he had an infected heart valve and needed a double bypass. Not a one of them had diagnosed those problems. I am thankful that he is still alive.
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I'm glad to hear your dad pulled through that time pelagia. Geez....four doctors.
You can still go out and scream kitkatz....get rid of some of the stress of the day...
His heartrate and bp still isn't right. One pill seems to have undone what the pacemaker fixed. I'm going to call the clinic again tomorrow.
One of the things the nurse told me is that his urine output has decreased, that they're dealing with three troubled organs, and to chart absolutely everything, from food, fluid intake, urine output, and whatever different pains he's experiencing. I'm going to be a hound dog with them until they get this figured out.
Thanks again everyone. Maybe tomorrow will be a better day.
All we do is take one day at time. Heck, sometimes, one moment at a time.
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Well, they're listening. His bp and heartrate still aren't right...called the nurse this morning and the doc finally got back to her. He's holding back his bp pills, we're charting everything over the next two days, and on Thursday, the doc wants the both of US to come in to the clinic at the hospital and see him. Usually I can't go to cliinic day as it's always the same day as Baxter's delivery.
I'd better take tape for my mouth when I talk to the doctor. :rofl; :sarcasm;
Life is never boring.
Oh, and after ten hours of being hooked up, he was told to do a twin bag exchange which he just finished.
I'm going to call them every day until they get this figured out and get him feeling better.
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I'd better take tape for my mouth when I talk to the doctor. :rofl; :sarcasm;
Oh, no, Wife -- keep your mouth open. Say it loud and say it clear. Say it over if the doc doesn't seem to actually hear what you're saying. Say it, say it, say it until you know that someone's heard you and is taking action. You've been right there with Wayne, and you know the signs and symptoms/reactions he's having. Right now, you're Wayne's biggest advocate; even if he doesn't admit it, he's probably counting on you to say it.
Usually, I've found that I'm right when it comes to Marvin and his multi-problems / reactions. Convincing the docs/nurses/techs that I'm right is not always easy. But I never keep my mouth shut. To Marvin, I say, "I'm trying to keep you alive because I'd have a helluva time getting up in the morning if you weren't here." Marvin (though he sometimes shakes his head when I start on a rampage) knows that I'm aggressive with his care/meds/treatments because I love him and need him. I know the nurses/docs, etc. call me a "bitch" behind my back; I don't care. This is my husband and my husband's life. And, besides, I'm usually right in the end, and they know that.
Get ready, Wife. Arm yourself with the knowledge you have (what you've seen Wayne go through), and fire the questions at them. Don't settle for their explanations or their care plan until YOU're satisfied that that is what Wayne needs. Give 'em hell, girl!
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:boxing; what Petey said!
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I also make the medical community shake their heads when I arrive, Sharon tells them to talk to me if they want to know her condition, she tells them that the meds mess with her head and she might not state the facts correctly, I'm with her 24/7/365, chart all her records, research all her meds before dispensing them to her and so forth. And I have no problem with "getting in their face" until we are both satisfied with the answers we receive. I must say that I have her general and medical power of Attorney and make sure that those we deal with receive a copy of them when we meet them.
So open your mouth wide and give them hell girl.......
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Dear friend, I can only hope the day has gotten a little better. I wish we were closer than the computer so I could stop by and sit quietly with you. My prayer today is that you can feel some of the peace you give to us and your heart is filled with our love for you and LL. :grouphug; :grouphug;
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Wayne was lying on his bed when he called out, "I think my pacemaker is exploding. Call an ambulance."
I thought he was having a heart attack and said I was calling an ambulance at the same time he told me to. You know something is going on when Wayne is wanting to go to the hospital! After I called them, I put my hand over his pacemaker and holy smokes, I thought it was going to pop out of his skin.
Two ambulances, five paramedics, and ekg, and a chest xray, a few hours, and we're still waiting to hear what is going on. They put on oxygen, have him hooked up to the heart monitor, and the pacemaker people came, took a reading and made some adjustments. He's still in emergency but I thought I'd come home to pick up his coat and shoes in case they release him tonight. And to rest my back. It's killing me.
I took his record book....told them what time he took the quinine, showed how his bp and heart rate changed afterwards, etc....they don't seem to want to talk about this.
Thanks for all the support! I'll keep you posted.
Thank you Epoman for creating this site!
:grouphug;
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:banghead; I am so sorry that there are so many problems. It all sounds so scary. And yet you sound like you are holding it together and staying sane. You are an amazing caregiver. Please keep us posted. I will hold you both in my heart tonight.
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Oh my gosh! Prayers to you both!
I am running screaming into the street for you all! AUUUUGGGHHH!
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And now he's home.
I pulled out the bags and a regular dialysis session is soon to be in the works. I hear the clamps. His heartrate is still too high, and he's exhausted. Mind you, so am I.
It amazes me, this journey that we are all on, where one moment, one can be quietly lying on their bed and the next, "a bass drum" beats hard and fast on a chest, leaving us thinking a heart attack is taking place. Or fluid is in the lungs, or blood pressure is too low, or all the things that dialysis patients experience.
He didn't have a heart attack. And he didn't think he was going to last for the paramedics. Neither did I. The paramedics said that he is a medical students nightmare. With everything that's wrong with him, they don't know what to do. Fix one thing, something else go out. Fix that, another problem occurs.
At least he has a pacemaker. The medical staff said it was an unusual reaction for a pacemaker, but it did its job. Apparently, he has the cadallac version. That sweetheart drove real well today. Took him around the corners at high speed, but it stayed the course.
Everything is out of whack, and they've been challanged to find balanc, prior to the quinine.
Since his quinine reaction, the nurses have passed messages to stop and start different medications. I will call the clinic tomorrow, or they'll call us because his neph was at the hospital and released him and is aware of what's taking place. I'll continue to keep tracking of everything, and on Thursday, we will both go to meet with the team.
In the meantime, I'm going to go and pour myself a nice cup of herbal chi tea, mix in a spoon of honey, sit back, take a long slow deep breath, and exhale gratitude for this moment, and for all of you.
Love...
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It sounds like you need some thing stronger than chai tea. FlipBob would have put Vodka in it.
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I'm glad your home now
( kisses for waynes' forehead)
Have your tea and don't stay up all
night worrying....too hard....you
need some rest too.
Me, I would be listening to every breath
Ray takes and counting the time between each
one, then taking his blood pressure, then his sugar,
and if I had a bloody ekg machine, I'd be hooking him up to
that too. Then Ray would ask what the hell are you doing.
Then I would say....'nothing'
Take care Joie, want updates.....deb
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:grouphug; The Wife. I am so sorry. I will pray that everything will start to get better. I'll be thinking of you. :cuddle;
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I hope you are sleeping as I am typing. and I hope today is better. :cuddle;
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Wayne had a good night. BP is better, heart rate still a bit high. He slept well and I only woke up once in the night.
I'm really tired.
At the hospital, they mentioned that Wayne's kidneys have changed. Twice. What does this mean?
The day before, one of the nurses told me that his creatine has increased since November. Something about urea too.
Hopefully on Thursday, we'll get a better explanation that will lead to better understanding.
I will keep all of you posted.
Between his liver, his kidney's, and his heart, I'm starting to get confused. I told the nurse I need training.
Or maybe I just need a shot of vodka. Don't drink the stuff but I could always start. :rofl;
Thanks again everyone. :grouphug; :flower; :thx;
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I think we need to get out the glasses and pour :wine; a little for all of us. You two have had quite an adventure. Hopefully you can both rest today. Thursday may give you a better view of what all is happening. I'll keep you both in my thoughts and will look forward to news on Thursday. You are an incredible caregiver. We all wish we had someone like you. :cuddle; :cuddle;
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things are a little calmer today. we're supposed to go to the hospital tomorrow to see the dialysis team to take a looksee at what kind of changes have occurred since the re-programming of my baxter machine. that little adjustment, plus the inclusion of quinine, one small pill, seems to have been enough to throw stuff out of whack pretty good. one of the paramedics wanted to make a list of all my issues and symptoms. we didn't get half-way finished the list before he had to say, 'man, you are a med student's worst nightmare!' nice to know i still make a difference to someone...heehee
he asked me what being on home dialysis was like. i said it was like being a drunk juggler on a tightrope in an earthquake. sometimes, all you can do is grab your balls and hang on.
it looks like, so far, that thanks (again) to my incredible wife, i just might make it to sixty!
:bandance;
thanks, all of you for your support of my partner through this. too few understand this journey, and too many are on it.
bless you all!
:thx;
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he asked me what being on home dialysis was like. i said it was like being a drunk juggler on a tightrope in an earthquake. sometimes, all you can do is grab your balls and hang on.
You pretty much got the essence of it with that one! I am happy to hear that you are feeling a little better.
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Good to see you post LL. We love both of you and hate that things have been so rough lately. "The Wife" helps all of us so much with her calm words. I hope we are of some help to her in return. You two make a good team. :cuddle;
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Where do I start? I know, I'll start with me. :rofl;
I've never had a bubblebath with candlelight at 2:30 in the afternoon, but yesterday, that's exactly what I did. Afterward, I slept for two hours, and last night, slept right through the night until a decent time this morning as nothing woke me up.
Wayne didn't cramp! :bandance; And I'd like to celebrate this for a moment, if that's okay.
:bandance; :bow; :guitar:
His blood pressure is a bit low and his heart rate is still too high but we had a good chat with the team. His doctor admited he was wrong when he changed some things, like his dialysis, but also told us that it's hard to find balance when you're dealing with the liver, kidney's and heart.
We're going to talk to them again on Monday, and get this figured out...
I also asked about the wait for the heart surgery. Is it because of the waitlist or is it because of the risk factor. It's because of the risk factor.
Once I knew that, I asked "When it gets to the critical moment, how much time does he have before I start worryng if he's not going to make it in time for surgery." When the symtoms appear, they usually book the surgery in a week, or in that month.
The next thing I asked was this: "So, I'm to watch for shortness of breath, chest pain, or passing out - he gets short of breath, and the other day, he had chest pain. How am I supposed to know if it's fluid in the lungs or his heart?"
Answer: Wait for five or ten minutes. If it doesn't settle when he's resting or lasts for an hour, it's time to do something.
We talked about neropathy, osteoporis, vasculitus, and threw in a few jokes.
I feel much better getting some of my answers answered, and better, knowing they really are doing everything they can and will continue to keep close tabs on Wayne.
Thanks everyone.
Have a beautiful day.
:flower;
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I'm so happy that you're feeling better about Wayne's doctor TW. It's awful thinking that they don't care or that our system is shortchanging us. I've been extremely satisfied with my medical people for the most part and this whole business would be too much to take if I felt differently. Thank goodness you got them to listen and felt heard too.
I hope things continue on this calmer track and your afternoon bath, nap and a full night's sleep sounded wonderful.
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Bubble bath, candles and in the middle of the afternoon! How decadent!! And you absolutely deserved every minute of it. Glad to hear the doctor visit answered some of you big questions. It is nice to hear that you had a good nights sleep and today is better. Be good to yourself more often :cuddle;
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It's so important to know what to ask and to feel empowered to ask. For me, that's one of the best thing about IHD. We can give each other the support we need. It's always difficult with medical professionals because some of them don't know how to listen and most don't really have the time to contemplate what it is you need to know. I am happy to hear that your docs were listening and taking the time to give you answers.
As far as the bath and the candles and the sleep - sounds like you got "just what the doctor ordered!" I am glad to hear that you are feeling better. You can't be there for Wayne if you are worn to a frazzle, now can you!?
And, finally, I hope Wayne is having a better day, and I hope tomorrow is better than today. One day at a time to a new, better, place. :cuddle;
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:yahoo; NO CRAMPING!! :yahoo;
That's been going on too long.
I am so happy that a treatment plan is coming around.
Do you keep a journal? I have one for Ray. Helps to keep
track of his disease, especially helpful to see if a pattern is developing.
Have many more nights of peacefullness, you and Wayne....debs
(oops, left out some little happy dancers, hence the edit)
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With Clinic days always the same as Baxter delivery days, I hadn't seen Wayne's neph since he started PD. He doesn't respond to emails or phone calls and this has been part of my frustration. I'm grateful that the doc took time, outside of his regular scheduled time, and spent quite a bit of time with us.
I forgot to mention that Wayne is dehydrated. Part of this was caused from using a 7.5 as a last bag, per their orders. When you add the heart problems to the mixture, quinine, and not enough fluid in him, it's no wonder his heart reacted and the pacemaker did what it did.
I learned a lot today and I'm still processing and coming to better understandings. Through all of this, I've decided to start keeping a journal. I can't believe I never thought of this before. Then again, I'm not surprised. It's another job to add to my list. Sometimes, I'm too tired to even read my list. But you know what, this is my life. The more I know, the better I can help Wayne.
While I'm helping him, I need to make sure I help myself. We all do.
And one of my new ways is going to be by taking candlelit baths on the days when afternoons work the best. I'm just not going to wait until there's another crisis.
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I journal here on the board through posts I write, but a good journal time is hard to beat. Go for it.
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I guess you could say I journal here. Not so much numbers, but things I can look back on if I need information, such as dates. It's why I like to keep what I write in one thread.
There was one thing the doctor said that I need to record. When we talked about quinine and I told him that it has been banned in the States, he said, "Quinine can cause heart arythmia's."
I wanted to ask him why he would prescribe such a drug, knowing full well that Wayne has this problem but I decided to let it go. If I were to answer for him, I would say that he was trying to help Wayne with the cramps and the only drug he could do it with, was quinine, with a hope Wayne wouldn't react. But he did. It was beyond stressful but Wayne is alive, and right now, that's more important than challanging a man who is trying to find balance for my partners body. When I asked about the pain from his neropathy, he told us there is a drug but the side effects wouldn't be good for Wayne and DIDN'T write up a prescription.
I think I'll just sit here for awhile and breathe....
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Breathing is a habit we should all take part in often!
I think about you all the time....you're one together
lady!!
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I don't have much to say mate but I do send you both lots of love
Take care
Here's some flowers to smell next time you have a bubble bath
:flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower;
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Bloop pressure and heart rate are now good. And it's the third night without cramping.
:clap; :bandance; :cheer: :guitar:
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This sounds like an upturn. :yahoo;
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:clap;
:grouphug;
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:yahoo; The Wife. I am so happy to hear that. :cuddle;
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Yes, we like the good news :flower;
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yes, it was a small adjustment of the machine, but it's made a pretty big difference for me, energy-wise. i feel better now than any other time on dialysis. they had me re-program my baxter cycler so i would get two more cups of dialysate per nite. not a big increase, but it does remove more toxins, it seems. now i use three 5 litre bags and one 3 litre for the last fill. the adjustment period was a bit rough, but it was definitely worth it! thanks again, to everyone, for the support and encouragement you give to my wife and myself, too.
love you all!
LL
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Tonight I loaded up a few LL/J songs and listened while I got creative
in the kitchen with some chicken and veggies for Ray's
after dialysis, day off, nice dinner tonight cuz I love him dinner.
We had a very nice evening....
Soooo glad I've met you J...debs
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How nice to hear you had a nice evening while listening to the tunes Deb.
Things are so much better now that they've got the right dialysis going. After W's pacemaker implant at the end of October, his creatinine started to go up. Well, I didn't realize how long the winter was until this week when Wayne started to feel better. I hear him playing the guitar in the other room and when I get a chance, I'll learn another song.
Lots of love to everyone.
:guitar:
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I believe we all know the one step forward, six steps back, dance. And I believe we all know how exhausting it is on us. As caregivers, all of our attention goes toward our partners and after emergencies, we find ourselves drained.
No matter how emotionally calm I may sometimes be when going through an emergency or a difficult period, I always find I'm exhausted afterward. It's as though I've been hit by a speeding truck, turned, spinned, and thrown to the ground. But I pick myself up, dust myself off, and find my direction once again.
Through the past few years, I've learned the importance of doing that which brings me peace. Or joy. Or both. I've learned that when the moments are gentle, I need to take the time to nurture myself.
I find nurturing through my admiration for nature. Sometimes, I simply sit and observe a flower or the leaves of a branch on a tree. I listen to the song of the robins, the caw of the crows, or watch the formations of clouds as they drift in the sky. Or I listen to my breath.
It's easy to forget to breathe properly when an emergency, or difficult moments or days appear, but through our breath, we can find calmness.
Take time each day to breathe deeply. Let your breath expand your stomach as you inhale, and lower as you exhale. Making this a part of every day will help through the difficult times and bring peace each day. Taking time out to breathe also helps clarify our mind, which in turn helps us deal calmly with those who work in the medical system. Instead of reacting out of fear or anxiety, we can speak, listen, and understand from a more grounded place.
:flower;
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Wow
How inspiring
Thanks for the post
I am reflecting your wisdom
I am breathing
Thanks mate
A wonderful and profound post
Bless ya mate
:thx;
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Hello again.
I thought I'd drop in and tell everyone how wonderful it is to see my husband feeling goooooooooood! His bones don't hurt, his feet don't feel like they're walking on glass, there are no cramps, and his energy is up. So much, that he's actually gone out to play music with a friend. He even cooked me breakfast two days in a row.
Wow!
He's out of the apartment and it's not to go to the hospital or for blood work. It's to have fun. :clap;
Wow again!
We just never know what is around the corner.
Love to all...
:flower;
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What terrific news TW. Long may it continue thus. :cuddle;
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Good for you all. Now take a few deep breaths of cleansing air and go do something you enjoy!
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:grouphug; The Wife. That is such wonderful news. :cuddle;
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What wonderful news! Enjoy another bubble bath while he is out. I am thrilled he is feeling better. You both deserve some good times. My cardinals were at my kitchen window this morning and they were chirping away----I thought of you. :cuddle;
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This is great news! Is this feeling better associated with the "little adjustment to the machine" LL mentioned earlier in the thread? If so, it seems that a little adjustment can make a big difference. Thank goodness.
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I think the two extra cups of fluid he's taking in each night and the adjustment with the machine is making the difference, plus, he's now getting and drinking Ensure everyday. I'm diligent about his diet and what I buy or make, and he is too. But when he doesn't always have an appetite, well, you just don't get the nutrition you need. Why the joint pain and neropathy stopped bothering him a few days ago is anybody's guess. Maybe the right dialysis affects this too.
I'm just so grateful that he's having these painfree days. Hopefully, things will remain stable and when the weather warms up, we can go out somewhere together. Now, wouldn't that be nice? I might even start saving my pennies and when I have enough, I'm going to hand them over to him so he can take me on a date. I was given a free coupon to Abkhazi Garden from my daughter and would love him to see it too. I'd also like to see it in May when all of the rhododendroms are in bloom. Even without the flowers, it's beautiful. Afterward, I'd love us to be able to enjoy a bite or a cup of tea while sitting on the patio overlooking a gazzillion flowers that have just bloomed. This would be perfect for the both of us!
I've been dreaming of us going out together for a long long time. Today, he was doing a bit of tai chi in the living room. If he keeps feeling the way he is now, he should be able to get some of the muscles in his legs back. I'm going to hold a vision of him walking along the garden path with me and who knows, maybe this spring, my dream will come true.
:flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower; :flower;
Here's the website for the garden: www.abkhazi.com
Check it out. It's gorgeous. Can you see the two of us there together?
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Here's a photo I took while wandering through the garden on my own last weekend.
(http://i413.photobucket.com/albums/pp218/joie_novak/fromdigital408.jpg)
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The Japanese Maple trees on View street are always the first to bloom.
(http://i413.photobucket.com/albums/pp218/joie_novak/fromdigital381.jpg)
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Paris - Say hello to the cardinals for me. Don't you just love the sound of spring? Usually I hear the robin in the morning but now I also hear her singing at dinner time. What a beautiful voice she has.
Hope you're having good days. :cuddle;
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http://www.youtube.com/watch?v=eaU8nLIjoy8
:guitar:
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You must be feeling better! :guitar:
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Hey, LL, it's says "original" under the icon for the song. Did you write it? I think so, because it says original. Great! I like it a lot - both the music and the lyrics. And nice bit of guitar solo there in the middle. :guitar:
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well thak ya, pelagia. yes, it was one of those songs that just 'wrote itself' - you could say.
once i had the chord progression figured out the words just popped into my head as if they were out there, just waiting for a vehicle.
more to come....
:waving;
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Light Lizard, so happy to know you are doing better! Hope you and The Wife are enjoying the beginning of Spring. :cuddle;
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:2thumbsup; Nice LL!
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http://www.youtube.com/watch?v=gCF7Aqxjs1M
:guitar: :flower;
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:flower;
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I like your music! :guitar:
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have some peace friends...
http://www.youtube.com/watch?v=hH_8tCXe_J4
:flower;
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I always look for your posts. Give my love to The Wife. :cuddle;
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Love received. Thank you Paris.
I seem to be in a bit of a reclusive mood these days. Not a bad mood, a sad mood, or really any mood at all...
Loving spring. Loving the symphony of robins that sing outside my window. Loving the days that are good for my partner and accepting and doing the best with the days that aren't.
And then a flower blooms...
:flower;
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http://www.youtube.com/watch?v=o1--tDsJ2w4
:guitar:
:waving;
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LL,
I love it when you share your musical talents
This is a lovely relaxing set
:thumbup;
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I look forward to your posts, and was very glad to find one today. Thanks for sharing your music, your thoughts, your peace with us.
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Spring is over and my dream of my partner and myself going different places by bus (now that we both have bus passes) didn't materialize. After he had his pacemaker implanted in October and got the use of his legs back, we thought this would be the spring to do a few of the things we've been missing. Oh, I had it all planned. We'd go to the park and the beach, catch different buses and go to different nature places in the city. Pack a lunch, hold hands while walking along the water. Go for coffee. Go out. Wrong.
Now it's his feet. They've bothered him for quite awhile now but the neuropathy has gotten worse. Yesterday morning, I witnessed the stagger, or loss of balance, as he walked from the kitchen to the dining room with a cup of coffee. "Don't worry," he said. "My feet aren't doing what my brain is telling them to do but I'll make it." And he did. But it wasn't easy.
He can't take the medications, probably because of his liver and heart, and he can't feel his feet but he can feel the floor. He can also feel the pain.
I wish people understood just how many things kidney failure affects. And I wish they had compassion.
Sometimes I forget to be compassionate. Like the other day when I came home at 2:30 and he still hadn't had lunch. I automatically assumed that he was just being lazy or expecting me to do it for him just because I usually do. "Can't you make yourself lunch?" I asked in a huff. "Do I always have to have something prepared for you?"
And then I felt like hell. Damn. I should know better. I know he can make something when he can stand long enough to do so. I know he wouldn't allow himself to get to a point where he feels like he's starving. And I know he doesn't expect me to do anything.
Ah, expectations. Expecting that things would have gotten better once the pacemaker was inserted and the right dialysis was found. Expecting we'd have some kind of normal like other couples. Expecting that he could easily walk outside. Expecting that we could wake up one morning and find that this was all a bad bad dream.
Expection. Ummm, now that also applies to me. I expect myself to always be supportive, in a good mood, and happy to do what he can't. Expecting that I would never get tired of being a caregiver. Ha! Expectations of myself disappointed me and when we don't get what we expect, we suffer. OK. Back to the drawing board.
Accept what is, let go of what can no longer be, and have gratitude for all we have.
Check.
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Makes me think of the quote, "Stop expecting and start excepting."
'Cept I don't wanna... :P
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Great quote. Never heard of it until now.
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I've given up expecting anyone to come over and help ME with the housework but I sure could 'except' if someone offered. ;D
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Makes me think of the quote, "Stop expecting and start excepting."
'Cept I don't wanna... :P
OK now I know I am losing it-- the quote is supposed to be, "Stop expecting and start accepting."
Wonder if there's a Freudian slip in there somewhere? :urcrazy;
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I thought it was clever.
Except. I accept all that is taking place, except how I feel about it right now.
For some reason, I'm feeling a bit angry over this again. Maybe it's the nice weather reminding me of what we can't do, or the people that keep telling me about their vacations or evening walks they're taking. Or maybe I'm just tired of having to do it all. I also live with pain but there's no one to help me. There it is. My own pain. My resentment.
I know I'm a natural caregiver, responsible, always there for the kids and anyone close to me but geez, does anyone ever think that maybe I'd like a phone call where they're not asking for something? Perhaps an offer to do something like dishes after they come over to eat the meal I've cooked? Or an invite and not because you need me there for your own reasons? Good ole mom, always there, always willing to push through because something has to get done and I'm the only one left to do it.
And there are the friends who only call when they need someone to talk to about their problems. In conversation they always ask how my hubby is doing but then quickly go back to unloading on me. God, how I wish I could tell them I don't have the energy to listen to how messy their house is because of the big renovation just done. Or I wish I could say, "Will you please listen to me without changing the subject. I know you think your daughter's artwork is going to cheer me up but what I really need is someone to listen. And to listen without judgement if I need to complain about all the things my hubby can't do. I don't need you to bash him and I don't want to get on the man bashing wagon either.
Boy, I really am in a mood. As a caregiver, I know I need to be strong. For my hubby, for the kids, and yes, even for myself. But what about the days when we don't feel strong, or we're sick and tired of our spouse being sick and tired? Or we just need a vacation? How do we find nurturing when there's no one to nurture us in the way we wish?
I guess the first thing to do is to admit how we're really feeling without feeling guilty for our feelings. OK. I'm angry and I'm accepting it. I think I'll roll in it for awhile, cover my body as though it's mud. Maybe I'll even cover my face, shake it, and watch as mud flings on the carpet. And then I'm going to step on it, mush it, and not give a damn that it has to be cleaned up.
Ohhhh ,now that would be fun.
:thx; It's good to know I can always come here.
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Now that I've gotten all of that off of my chest, I can return to seeing a few good things.
I found a braun food proccessor for $15 at a second hand store and I've been looking for about three years. It is a sweet machine that cuts my working time in the kitchen way down. I am so graterful to have found it.
And after what feels like a forever wait, I will be attending eleven sessions at the pain clinic starting next week. There are usually twelve but because of Canada day, one is taken off the schedule. Once these sessions are done, the door opens to different programs such as yoga, art therapy, councelling, etc. I'm looking forward to this and even though I can't draw or paint, I'm thinking art therapy might be something to sign up for...and the yoga classes too. Ummm, I just might get my nurturing afterall. ;D
I know I've said it before, but I want to say it again. I appreciate this site and all who share. I also appreciate being able to write and work things out here. Writing helps sort things out. It helps discover and release whatever I'm hanging onto and maybe what I share can help someone else. Even when I'm in a mood.
:flower;
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I know I've said it before, but I want to say it again. I appreciate this site and all who share. I also appreciate being able to write and work things out here. Writing helps sort things out. It helps discover and release whatever I'm hanging onto and maybe what I share can help someone else. Even when I'm in a mood.
And I, in turn, appreciate being able to read your posts and your internal process that echos in my own processes so often...
Being angry and then being angry at being angry. Sigh. It isn't easy being the caregiver, but I have to remind myself that it is easier than being the one with renal failure.
Thanks.
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Thanks Willow. Yes, a reminder that it's easier than being the one with kidney failure. I don't know how my hubby stands it. Sometimes I think that maybe I get angry because there isn't anything I can do to make him better. Seeing him stagger was hard to watch, especially knowing how beautifully he used to once move. Especially when he did tai chi. He could balance on one leg and kick the other almost straight up. And now...
Thanks for listening. I need to remind myself that it's ok to share with others the not so good feelings. Perhaps we all do. Patients, caregivers, and family members....
I have returned to peace.
:guitar:
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And after what feels like a forever wait, I will be attending eleven sessions at the pain clinic starting next week.
.................. Ummm, I just might get my nurturing afterall. ;D
I'm so happy for you! I hope you share updates. It would be fantastic if the
clinic referred you to a professional massage therapist. I hope that there is
not too much tissue damage.
Oh Happy Day! My friend is going to get her pain issues addressed!
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Just seeing you brings nurturing Breezy Deb:)
Not sure if I've mentioned it or not but I had a spinal fusion years ago, have arthritis around the area and a nerve caught up in the mix. Get sciatica real bad. One of my vertabraes above the fusion has also slipped backwards a bit. And then there's the arthritis in the knee and in my toes...I really do get worn out from doing every day things. And if I overdo it, the only thing that touches the pain are two T3's.
A massage sounds wonderful. I bet they have one of those too! Now I'm really getting excited about going. I just know this is going to be so good for me. When caregiver takes care of herself, cargiver can give more easily with joy. And not only will this help me, I'll be able to pass info to my hubby. Maybe something I learn can help him too.
I'll let you know how it goes.
How are you?
xxxooo
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Dear Wife - I agree with willowtreewren. Somehow reading your posts is like letting it all out myself. Thank you for that. And, even though we're not sitting in the kitchen with you, rest assured that we are "listening." :cuddle;
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For some reason, I'm feeling a bit angry over this again. Maybe it's the nice weather reminding me of what we can't do, or the people that keep telling me about their vacations or evening walks they're taking. Or maybe I'm just tired of having to do it all. I also live with pain but there's no one to help me. There it is. My own pain. My resentment.
Wow, your whole post felt so familiar to me; I have experienced every one of those feelings and thought all of those thoughts at one time or another during my time as a caregiver. It's been said over and over, but it is such a relief to know that I am not alone. :cuddle;
Kara
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Art Therapy?
That would be so cool if you could tie in some type of
art with your writings. A boxed set of cards or even a
calendar with your words of wisdom super-
imposed over original art....wow!
I'd like to hear a bit more about the pain clinic
after one or two sessions. So, hoping you update.
treehugger: "your whole post felt so familiar to me"
That is the beauty of Miss Joie!
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Interesting that you should mention cards. After I was downsized from my job in 2002, I took a business course sponsored by EI. Took my poetry and photography, and tried to create inspirational cards. To my surprise, my business plan presentation was voted by the class as the Oscar Winner. I didn't think I had a business bone in my body. I planned on continuing but I was dealing with a leaky condo, knew I'd have to say goodbye to my home, and didn't have the money for supplies. I felt like a failure again. And then Wayne got sick.
Reading all of your responses touches me deeply. One thing I've realized is just how much I miss having good friends. When I think back to the conversations only women can have, I smile, shake my head, and chuckle out loud. Due to the downsizing, those who were close to me moved away, some I simply lost contact with, and others became too busy with their lives. I miss the sharing of our hearts.
All of our hearts have bled for those we love but through sharing, well, here's a little poem I wrote a few years back:
through sharing, we unlock
what needs to be set free
in the hearts of others
through our courage
we insire another
to find their own
through compassion
we're given gifts more beautiful
than we can ever imagine
Today, I add:
through sharing, we unlock
that which needs to be set free
within ourselves...
Thank You :flower;
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:flower;
Your poem is beautiful. Thank you for sharing it. It's always nice to come to here...nice to know others feel as I do sometimes.
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:flower; :grouphug; :flower;
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Being human means connecting with others. Your sharing with us helps me feel more connected.
Your poetry is lovely.
Thank you.
:guitar:
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Hubby and I have been talking about a transplant. There are a lot of questions, espeically with his heart and Hep C, but it looks like we're going to get a few questions answered afterall. He got a call yesterday and we'll be heading to the mainland on Tuesday to see the transplant neph and social worker. I've had to cancel my appointment at the pain clinic for that day but they said I could make up the session at a later date. It's also Baxter delivery day but my neighbour will let the delivery man in. Ever notice how everything seems to happen on the same day?
We've only been waiting for two years and eight months to hear from the transplant people. Better start writing my list of questions out....
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No matter how many questions you think to ask, there will be many that you didn't think of.
Browse through posts here at IHD for more ideas. :2thumbsup;
Good luck.
Aleta
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Thanks Willow...
We woke at 4am and while I jumped in the shower, my partner waited for his last bag to fill. A cup of coffee, a muffin, and out the door we went an hour later. Five hours later, we were at the hospital.
We spent five hours in the hospital only to discover what we already knew. Too much information was missing to determine whether my parnter is eligible for a transplant. Like the Hep C issue.
Since the treatment nearly killed him, he can't do interferon. If they find any trace of active Hep C, a transplant is out of the question. We have to go back to Vancouver to see a specialist about this.
We stop here.
And wait for the next call.
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Wife --
I, too, always read and re-read your posts. You say the things that I'm feeling but never say for myself. I feel that I can vent and share when I read your posts because I think to myself, "Yes! That's exactly what I was feeling (or thinking...or questioning)." You give my thoughts words. I'm not good at sharing my inner most thoughts and fears, but, through you, I can get them out -- even if it's only in my own head. I thank you for that.
Petey
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Yes, a reminder that it's easier than being the one with kidney failure. I don't know how my hubby stands it.
If I had been the one with kidney failure instead of Marvin, I'd be dead by now. I would have given up. I would have quit. I would have thrown in the towel. And I would have done this a long, long time ago. I don't know how he has lived with it -- and through it. He's a much stronger, braver, better person than I am.
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I have to remind myself that it is easier than being the one with renal failure.
Yes, a reminder that it's easier than being the one with kidney failure. I don't know how my hubby stands it.
If I had been the one with kidney failure instead of Marvin, I'd be dead by now. I would have given up. I would have quit. I would have thrown in the towel. And I would have done this a long, long time ago. I don't know how he has lived with it -- and through it. He's a much stronger, braver, better person than I am.
These statements surprised me. I actually disagree completely. I think it's harder being the one watching someone you love suffer and being powerless to do much about it, and having to always be the person that your partner relies upon.
I am the one in renal failure in my household. Maybe it's because I have lived with this so long that I really don't know anything else, or maybe it is because I feel that my experience has been ridiculously easy compared to so many others in renal failure. I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....
Thanks for sharing! :flower;
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I have to remind myself that it is easier than being the one with renal failure.
Yes, a reminder that it's easier than being the one with kidney failure. I don't know how my hubby stands it.
If I had been the one with kidney failure instead of Marvin, I'd be dead by now. I would have given up. I would have quit. I would have thrown in the towel. And I would have done this a long, long time ago. I don't know how he has lived with it -- and through it. He's a much stronger, braver, better person than I am.
These statements surprised me. I actually disagree completely. I think it's harder being the one watching someone you love suffer and being powerless to do much about it, and having to always be the person that your partner relies upon.
I am the one in renal failure in my household. Maybe it's because I have lived with this so long that I really don't know anything else, or maybe it is because I feel that my experience has been ridiculously easy compared to so many others in renal failure. I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....
Thanks for sharing! :flower;
and then there are those of us who do not have anyone. Having ESRD and being a single dad of three can be very hard. Reading these posts makes me really miss having someone to care for or care for me.
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Ylguy,
It must be VERY hard for you to handle this whole thing on your own. My heart goes out to you. Please hang in there and talk to us whenever you feel that you need someone.
Hugs
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I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....
Thanks for sharing! :flower;
[/quote]
I understand this...and yes, it's hard to watch someone you love suffer. Being powerless can tear your heart out. And I'm with Petey on this one. I would have been done a long time ago if I were the patient. Well, at least that's what I think. NO matter what side of the machine we're on, we all have to deal with kidney failure.
Viguy - I don't know how you manage on your own with three kids. My heart goes out to you. I wish help could come to you.
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I have to remind myself that it is easier than being the one with renal failure.
Yes, a reminder that it's easier than being the one with kidney failure. I don't know how my hubby stands it.
If I had been the one with kidney failure instead of Marvin, I'd be dead by now. I would have given up. I would have quit. I would have thrown in the towel. And I would have done this a long, long time ago. I don't know how he has lived with it -- and through it. He's a much stronger, braver, better person than I am.
These statements surprised me. I actually disagree completely. I think it's harder being the one watching someone you love suffer and being powerless to do much about it, and having to always be the person that your partner relies upon.
I am the one in renal failure in my household. Maybe it's because I have lived with this so long that I really don't know anything else, or maybe it is because I feel that my experience has been ridiculously easy compared to so many others in renal failure. I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....
Thanks for sharing! :flower;
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I messed up the quote and requoted...
Anyway...
How do we do this? Someone I know asked me this question a few times. Do we really have a choice? Well, I guess us caregivers could walk out the door but since we're here, we know we're not going to do that. Doesn't mean we (I) haven't thought about it. I think about a lot of things. But thinking isn't going to change anything. Except my perspective.
Ten hours to go to a medical appointment, five hours in the hospital, a trip off the island.
A trip. Ten years since going to Vancouver. A ride on the ferry. Observing the small whitecaps, other boats, people. Seeing skyscrapers that really do scrape the sky. A coffee after the apointment. There it is.
Going out for coffee. Something we never do. Eating our subway sandwhich on the ferry while sitting outside. Out for dinner. Ah, another gift. Dinner on a seat with a waterfront view. Meeting someone we know. Conversation. Laughter. Enjoying the warm breeze. Another view of active pass. The ships horn.
Finding joy in moments of an exhausting day.
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Simple pleasure are good - it's nice when you can grasp them at the moment - sometimes the stress gives us blinders. Reminds me to savor the good stuff - thanks Wife.
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Oh Lord, here we are arguing that the other person is worse off than us! I agree in that I always feel it is worse for Paul (my husband and caregiver) than for me. That's because as the patient you know where you are in your head. The caregiver gets to do all the boring stuff, as well as contending with the whole feeling of failure - i.e not being able to FIX it! Lets just all agree that it's a bloody bugger of a thing, and we're all amazing for dealing with it. Pat ourselves on the back and do three cheers.
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hurray hurray hurray for caregivers!!
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Although I can't call myself a true caregiver, my husband does home hemo alone during the day while I am at work. So although I am not here helping him during dialysis, I do just about everything around the house that makes the house run.
My loneliness is what gets me down. Sure, I get out to work, shopping, pedicures and such but there is no fun in my life. I miss my husband. I miss doing things with him. I miss the spontaneity in life.
So I hear where you are coming from although maybe in a different way. Chin up and we carry on.
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The Wife, I always look for your posts to center me and give me some peace. Thank you.
redz, I am the patient, but I relate to what you wrote. I feel horrible that my husband is missing out on so much because I don't feel like doing much of anything. He said the other day that he hasn't had a real vacation this summer and I felt so guilty. Traveling was a huge part of our lives and now, well, it drains me to even think about it. These were suppose to be the good years, but I changed all of that and it is very hard not to feel responsible. It isn't good on either end, is it? I would rather be the patient though. I don't want anyone else to feel this way. I liked your last sentence --"chin up and we carry on" -- yes we do. :cuddle;
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Thanks Paris.
Hanify - I don't see anyone arguing...perhaps, just stating what part of the bench they're seeing the view from - you know, our own perspective. If I say something is hard on me, in no way am I comparing or saying it's worse than what my hubby experiences.
Anyway....
It's been one hell of a week. Actually more than a week. The trip to Vancouver had it's price. Two days before we left, his neph changed his bp prescription to Atacand. It dries out the lungs and causes one to catch a cold easier. At least that's how I understand it.
Well, two days later, my hubby became quite ill with a lung cold/infection. He feels he caught it from the hospital in Vancouver. It seems that whenever he goes to the hospital for something or the doc tries to change or fix something, something else goes out of whack, or he catches some horrible bug that nearly knocks the life out of him. He's still quite ill.
We all have our stresses and we all feel for each other, but no matter who we are, be it patient or caregiver, we're in it together. I may not be feeling the physical effects my hubby is - but listening and observing can at times, be pure torture.
I breathe....
I look out at the trees and the blue sky...
I exhale...
It is a beautiful day. :flower;
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I am sitting here breathing with you. One breath at a time. Some days that is all one can do. :cuddle;
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We all have our stresses and we all feel for each other, but no matter who we are, be it patient or caregiver, we're in it together. I may not be feeling the physical effects my hubby is - but listening and observing can at times, be pure torture.
There you go again, The Wife ... giving black-and-white words to my innermost thoughts. Were you reading my mind when you wrote this?
As always, thanks for sharing your words.
:thx; :thx; :thx;
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Paris - :cuddle;
Petey - :cuddle;
I was woken the other night at two in the morning by the sound of a strong wind blowing around the branches outside my window. It wasn't the only sound that startled me awake.
When I walked into the other room, my husband was doing a chi gong exercise called 'swinging arms.' The sounds coming from him were also startling. "What are you doing?" I asked, feeling confused and not sure of what I'd just walked into.
"I feel like I'm drowning."
I couldn't understand. The antibiotics had started to work; Why this drastic turn? In my confused state I watched as the tube moved like a snake on the ground with every arm swing. "Do you want me to call an ambulance?"
No he didn't. He would sleep upright in his chair if need be but he wasn't going to go to the hospital. If only we could get oxygen without having to deal with all the other stuff that takes place in hospitals. If only I could help him.
Last night was much easier. He slept.
There are moments when sheer terror can grab at our hearts, where a feeling of complete helplessness can take over and all we can do is watch, and wait until the storm ends.
And sometimes, breathing with conscious awareness, is all we can really do.
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And sometimes, all we can do is cry. And cry in the most inappropriate places.
On about day six of this lung infection, I stood, waiting for the bus to take me to the pain clinic. As I waited, I witnessed a man in an electric wheel chair thow himself out of his chair when he hit the curb. Watching as he sat helpless on the road, I started to cry.
I just didn't have it in me to see anymore suffering. After a few minutes, strangers stopped their cars and helped the man back into his chair. I cried even harder, noticed the bus, and wiped my tears. Kindness always moves me.
When I arrived at the pain clinic class, I poured a glass of water and promptly spilled it. After I cleaned up the mess, the person sitting next to me spilled hers. "Can you get me a paper towel from the bathroom?" she asked me.
Usually, I'm the one that is happy to help but not on this day. And not there. "I'm not here to be anyone's caregiver," I replied. I didn't know what else to say.
At least she understood. Or did she? Can any of the people I sit around the table with from Monday to Wednesday afternoons truly understand what it's like to live in pain and be a caregiver at the same time?
I hope they never do.
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I've gone through this long enough to recognize burnout. It's during this time, I need to speak out and say no to others outside of my family. I don't like it and maybe others don't like me because of it. Perhaps, they think I'm cold or uncaring but I'm not.
Caring for ourselves is important. Nurturing ourselves is necessary. One of the ways I do this is through writing. Words on the computer screen reaches outward and returns. They point me toward what I need to take care of within myself.
Do I (we) need to simply be heard? Do we need rest? Or do we just need a hug and encouragement to help us get through the tough periods?
What do you need?
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Joie,
Is wayne producing a lot of sputum?
Check the color of his extremities,
are his feet the proper color? Can
you listen to his lungs with a stethoscope?
If he sounds especially 'wet' or 'raspy' I would
do what I think is best and call for some help.
My ray got mad at me for taking him to the
emergency room. "Not going to do any good"
He called me from dialysis and wanted me to pick him
up because he was feeling weak. He got care at the
dialysis center, tylenol and gentimicin. But with the
fever and dialysis, he had too much fluid loss resulting in
low blood pressure. He got back 2 liters and they pulled
his perma cath because it was infected. My point is if
wayne gets angry with you for over riding his wishes,
so be it. You will know that you did everything
possible to help.
And I love your writings. I can't imagine coming to
IHD and not reading your posts. Even re-reading them
to remember how during a darkest hour, my spirituality
was rejuvenated by your thoughts. You put into words
'my confusion'. One of your writing has become a form
of meditation for me. (hope not too much information
or weirdness, please)
So please let me, really us, know how things turn out.
:grouphug;
debs
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Deb,
Wayne has gone to his GP and did so as soon as he felt this thing turn into pnemonia. He's had it before and knows the taste. Anyway, the doc gave him an antibiotic but he just isn't seeming to get any better. Well, a little. Whatever caused the drowning feeling last night passed. I guess his chi gong did something. The movement he was doing does work the lung meridian and he said he felt like something was trying to break free. He's not spitting any sputum up but is coughing. His throat is so raw, he's lost his voice. He still has a few days of pills left and if this isn't gone by the time they are,another trip to see the doctor will be in the works. In the past, I have overidden Wayne's wishes and he's also asked for me to call him an ambulance. I've also learned to trust his intuition.
A trip to the hospital is such a big deal. If it's not an emergecy, he has to take the bus. With the neropathy in his feet and the distance required to walk, it's not easy. He also doesn't want to go to the hospital because he doesn't want another chest x-ray. They're always x-raying his chest. This past month has been filled with medical appointments. There's the kidney care team, his gp, the cardiologist, the pacemaker clinic and the trip to Vancouver to see the transplant team. No wonder he doesn't want to go anywhere.
Thanks for the feedback on my writing. No weirdness at all.
Hope Ray feels better and that you're getting some good down time.
Hugs, Joie
ps. I'm enjoying the pain clinic classes. They're quite informative and we have great discussions. Once finished, I'm going to see about signing up for the art therapy and yoga classes.
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He called his doctor two days before his antibiotic ran out and the doctor ordered a stronger prescription. This is a nasty virus that is going around but he's slowly getting over it.
I take a deep breath and release the worry I've held through this...
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I wish I had the words of peace to give you strength. Instead, I selfishly come here for my own peace and calm. I,like so many here, find your thoughts soothe me and make the day bearable. I will continue to keep Wayne in my thoughts and you, also. Him for healing, you for inner strength and calm. Love to you both :cuddle;
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Thanks Paris. The new medication is causing constipation and as we know, this is not good for someone on PD. He's so filled up with toxins, it's worrysome. Always something, eh? Fortunately, Wayne's nurse called again before we had a chance to pick up the phone and call her. I like her. She seems to actually care. She's going to get his doctor to order something for this new problem. The lungs are continuing to improve and he's still on antibiotics.
Sometimes I wonder how we have the strength to keep walking through these challanges. I suppose everyone has different methods of coping. As you know, I breathe.
When you breathe, do you stop at your chest or do take it down into your belly?
As I write these words, a breeze blows through the opened window. It blows my hair back and refreshes my skin.
I think I'll just sit here for awhile and enjoy it. Take a deep breath, fill your tummy expand, release, and smile.
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this is my new 'toy.' to me, it's not really a toy. it's a tool of sanity and beauty...
http://www.youtube.com/watch?v=6JvOnnqGqgg
(if you want to see joie, look for the video 'abiding high' - she is..heehee)
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Ha!...LOL
it's good to see Joie smiling ;)
(if you want to see joie, look for the video 'abiding high' - she is..heehee)
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I couldn't help myself. Wayne was quite ill during that recording and I thought I'd join in with my magical stick. You know, see if it can shake the virus away... :rofl; If I'd known he was going to post it on the internet, I would have combed my hair and worn a bra. Geez... :rofl;
Anyway, it's now over a week with the constipation issue and I'm concerned. Even though he's taking the liquid that was ordered, it doesn't seem to be doing much. Today is the last day of antibiotics. Hopefully things will start moving in a more productive way.
Toxins. Toxins that aren't being removed from dialysis and toxins from being constipated too long. He became confused one night but that has passed. I know constipation is not good for someone on PD. I've read it affects how much of your dialysis fluid is getting through.
It's been one thing after the other and I would like a break from having to worry.
I'm sure he would like a break too.
Today is the last day of the pain clinic. Yesterday, we talked about depression. Good timing. All in all, I've learned a lot and am looking forward to going over my papers and putting together what I need to take care of myself.
AND I made a friend or two. You won't believe this. One woman I connected with used to be an RN in the hospital. Worked in cardiology. Knows a lot about open heart surgery. This is a double gift!
And she wears the same size top as I do. When I told her I loved her style of clothing, she said she thought we were the same size and is planning on passing me clothes when she's tired of them.
Things just keep getting better. Now to get Wayne to poop.
Oh the things I share... :rofl;
:flower;
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It seems just about all Kidney patients face constipation problems, what with fluid loss or build up constantly, one of the tried and true things we know will work when medication does not do the trick, believe it or not is Sauerkraut , especially the "bagged" type in the refrigerated section of the store, cooked with some spare ribs on the stove top, consume the meal and keep a clear path to the bathroom, it works really fast.......
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Thanks Silverhead. We have a jar in the fridge. Yeah, constipation is a problem this is too much. All of this is causing him to cramp again too and he's drinking a lot of water.
As soon as the home dialysis unit opened, I called and talked to the nurse. I am so grateful to have someone to call. Anyway, she talked to the both of us, is listening to all of my concerns, and tomorrow I'm going to see if I can get my neighbours car so that I can take Wayne to get blood tests.
What a month.
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'keep a clear path to the bathroom' that broke me up! :rofl;
thanks silverheaad, i'll give that a shot today!
:beer1;
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a little bit 'o' nostalgia fer yez...
http://www.youtube.com/watch?v=je78s17kW8s
things are flowing nicely, these days. (thanks silverhead!)
:guitar:
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a piece of the evening...
http://www.youtube.com/watch?v=9cLyRCCAClU
:flower;
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for those of you that think my posting my music is just an attempt at shameless self-promotion; FYI, i have nothing else to offer the world but my music. and really, i don't and won't be making one penny off of any of it.
i'm a dialysis patient, too, y'know.
:secret;
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Keep posting them, I enjoy it........my only musical ability's lie in my ears
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thanks for 'getting' me silverhead. not many do, it seems. i take solace in the saying
by my favourite american author, henry david thoreau;
'nothing is as good as it's popularity.'
:guitar:
:thx;
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I think it's great that you share your music with us, I wouldn't be brave enough to do something like that (when it comes to musical ability I'm with Silverhead!). As for making money, I wish you could make money out of your music, it's a lot better (and more calming/soothing) than a lot of stuff 'out there' - keep on posting. :2thumbsup;
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I think it's great, and wouldn't care in the slightest if you were to make money from it. Keep posting them.
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Besides, we can all say "I knew him when"............
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thanks friends. now i feel like i might have sounded like i was fishing for compliments. sheesh, i'm so stinkin neurotic! musicians are a weird bunch, hey?
seriously, thanks for the kind words. and when it comes to making money from my music; been there, done that. about 40 years ago. had my turn at the 'big time' and got close enough to realise that the lifestyle wouldn't serve me well at all. so now, i play for therapy, more than anything else. sharing it with ya'll is my feeble attempt at 'giving back' to the world. even with all the complications of life, dialysis and the periphrial shenanigans, i still have enourmous gratitude for this process we call 'being alive'-
i may not say it often, so that's why i have to play it. ;)
love to all
LL :flower;
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I just wanted to add my :twocents;
I also enjoy your videos. Sharing your music is more of a gift than you might know.
Thanks.
:thx;
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thank you so much willow. the hope of that helps to keep me going.
music, in general, i find igives me incentive to continiue on, regardless of the pain days. if i play thru the pain, it seems to be so much more bearable.
like good friends.
:flower;
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First: thank you for sharing your music with us. I enjoyed watching but mostly listening. I have a quick question. Do you have a fistula? In a previous life I was a percussionist. Now, when I clap my hands my fistula feels...weird. I would imagine slapping a drum would drive me nuts. Thanks again! :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap;
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thanks YLguy. i do have a fistula, in my right wrist. it's never been used because i do home P/D for now. the fistula is for 'back-up' should i have to go to hemo. it hasn't caused me any discomfort at all while drumming, or playing guitar...if it were to be used regularly, i wouldn't be surprised if that changed.
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:flower;
http://www.youtube.com/watch?v=8yuknJPJJ0U
:thx;
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words can be so inadequate sometimes...
http://www.youtube.com/watch?v=02E3t_O0TVQ
:flower;
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LightLizard, what is that thing??
My husband is on home hemo dialysis. He is a bass player since the age of 14 or so. He is now 59. Somehow he managed to keep playing up until 1 wk ago. He was so weak and flubbed some notes on a gig. The band has been very kind to him over the years with his various medical conditions but they were worried about him and kinda nicely told him to take a break and get himself feeling better. He is very, very depressed. He lives for music and now feels that he will never be back on the stage again.
I found your YouTube and some posts and felt a kinship....
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hi red. i really feel for your husband. that must hurt a lot.
let him know i'm open to emailing, if he's into it.
the instrument you ask about is called a 'hapi' drum. 'hapi' stands for; 'hand activated percussion instrument.' it gives drumming a more musical approach. essentially, it is a metal tongue drum. the 'tongues' are different sizes designed and tuned to present a specific note. they are very easy to play, especially for anyone that has some experience with any kind of instrument.
they are made in california, and while they might be a little 'pricey'- they are very well made and could be passed down from generation to generation. you can check them out here
http://www.hapitones.com/virtual-hapi-drum-e-major.html
i feel bad for your husband because i know what it's like to have your music taken away. and everything else, too. i played the kit, professionally, for many years, but thanks to renal problems, my legs won't work the bass drum and hi hat anymore. lucky for me, i started with hand drums when i was around 12, 13, so it's easy enough to return to that for me. i hope your husband can adjust and find a way to stay musically active, even if it's without other players. we all need some kind of life raft, and for the musician, that's what music is.
i'm on facebook too, under the name wayne wilson -vancouver network.
all the best.
w
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Thank you LightLizard, I think right now he is in shock and scared. I am trying to be encouraging by telling him that he has been in crisis before and that the wonderful drs and staff at the Hosp of the Univ of Pennsylvania here in Philadelphia have dealt with his medical issues with good results. At the same time I pray.
He isn't much for message boards or talking about his illness very much. I remember when his kidneys failed years ago and his dr at that time said that he would be listed for a kidney/pancreas and that that was exciting. We both looked at each other like the dr was out of his head. Exciting! Real exciting. But ironically, 6 mos later when he got the 2 organ transplant and they worked it was exciting. The pancreas is still working but after 16yrs the kidney gave out about 2yrs ago.
It is such a special gift to be artistic and I have always admired people who have found their passion and work hard to realize it. To the outside world playing in a band ooks like fun but you and I know that it takes a lot of dedication and hard work to be a working musician.
So I like what you do with that hapi drum. It is a very cool sound. I will be checking you out on Facebook and hopefully hearing more music from you...
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Oh Boy, Light Lizard, I love your hapi drum and, unfortunately, so does my husband. Now he wants to get one, and they run about $99.00 here. That is not so awful bad. The music is just awesome and so relaxing. I may even give in and let him buy one.
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thanks jean. actually, the true 'hapi drum' costs more than that. beware of cheap imitations, because there are a few out there. if i didn't have a drum set to sell, i never would have been able to afford one at all. they are very therapuetic and it is so easy to get totally lost in the sound for hours at a time.
if your husband does get one, you just might find yourself getting lost in it from time to time, too!
:flower;
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http://www.whalesounds.com/home/index.html
:2thumbsup;
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I didn't realize how deeply I was holding my worry inside. Not until the doctor called, that is. He never calls, not even when asked. He'll get his nurse to call or another kidney doctor to call when there's a problem, but never seems to make the call himself. Until two nights ago.
My husband has had one thing after another to deal with since summer, and then all of a sudden, his energy increased. Blood tests showed his iron was too high so his doc told him to stop his iron and go in for an ultrasound. This was to check for a tumor.
As I sat in the rocking chair, I thought "What if it is a tumor? What then?" At that moment the doctor called. My heart sank. Previous experience has taught me that doctors only call when it's bad news. Not this time.
It's Thanksgiving Weekend here in Canada and the doctor knew we'd be waiting for the news. Thanks to him taking the time to ease our worries, I can now share the news that LL doesn't have a tumor at our dinner table with our children.
Happy Thanksgiving to all the Canadians on the board. I know it's already a happy one for us!
:beer1;
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I hope you have a lovely holiday with your family. And it is great news that there isn't a tumor. :thumbup;
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Thanks Paris. October is also the month my husband started dialysis. The first Thanksgiving, he was in the hospital, the second and third, he was too sick to attend, but this one, he has energy and an appetite!
My daughter's husband's mother usually has dinner at her place but this year, my daughter wanted a dinner with just us.
We'll lift our classes for the 'three year mission' as my daughter calls it, news that there is no tumor, and generally a celebration of life. When this dialysis stuff all started, and through so many other things that have taken place, I didn't think my husband would be around today.
Nor did I think it would be so sunny. The roses still bloom. :flower;
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Oh, and I forgot to mention that his arotic stenosis is progressing slower than expected. So slow, the cardiologist couldn't understand. If this continues to progress slowly enough, maybe he won't ever have to have that open heart surgery.
How I wish.
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Happy Thanksgiving to all the Canadians on here and especially (as I think of this as your thread) to LL and The Wife. We had our dinner last night up at the cottage but I did a barbequed butterflied leg of lamb instead of turkey, mint sauce, roasted glazed root veggies and roasted potatoes, sesame sees broccoli, salad and lemon meringue pie.
We have much to be grateful for this year with my transplant and I also celebrate with your family the good news about no tumour and the slowed down stenosis. XO
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I'm sitting here with tears of gratitude in my eyes thinking of all you've gone through and that you've had a successful transplant again Monrein. We truly do have a lot to be thankful for and your dinner sounds beautiful.
My daughter bought turkey breasts instead of a whole turkey and for pumpkin pie, she used butternut squash instead of pumpkin. As I write these words, a smile comes to my face as I relive the conversation I had with my almost three year old grandson this morning.
"Would you like to come to our house for squash pie Gramma?"
I am so looking forward to Thanksgiving dinner this year. I told my daughter she didn't have to go to to much trouble, that a bowl of soup and a bun would be good enough but she's really getting into it and apparently, so is my grandson. He already ate some pie!
Good thing my daughter made four. :rofl;
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Happy Thanksgiving Joie...debs
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My heart sank a bit deeper into my stomach when I read a couple of posts up. Thanks Deb for the Thanksgiving wishes...
My husband has been diagnosed with incurable liver cancer, caused from the HEP C, contracted as a child. By the time they discovered it, it had spread to his spine. We were in the process of seeing if he was eligible to get back on the active transplant list after his open heart surgery last year...only to discover the cancer.
We are now doing Palliative Care at Home.
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Oh, no. :'( I am so sorry, Joie.
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Your summation of caring and sharing helped me find true meaning, I am so there with you now....
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He died on January 11/2012
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I knew, and I didn't write, and I'm so sorry.
:'(
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I am sorry-I did not know. you have my deepest sympathy, you are both really sweet and I will remember his love of music and of you.
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Dear Joie...I'm so very sorry to hear this sad news about Wayne. My deepest condolences to you and the rest of your family. May he rest in peace and may you find that peace within yourself also. :cuddle; :grouphug; :cuddle;
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Joie, I am so sorry to hear this. My heart aches for you and my prayers will include you daily. :cuddle;
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This is a Happy Song....
but it made me cry.
http://www.youtube.com/watch?v=Zx2F0TbaCLU (http://www.youtube.com/watch?v=Zx2F0TbaCLU)
Aleta
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Thank you everyone for your kindness.
And thank you Aleta for posting the Happy Song. Wayne wrote it shortly before his open heart surgery. He wanted to leave something in case he didn't make it. Well, two years later...
I woke up this morning wishing I could see him again. We are fortunate to live in a time where Youtube exists.
I've become rather reclusive. It's probably not good for me but it seems the right way to be these days.
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My thoughts are with you and your family. It is so unfair when you have both battled these illnesses for such along time.. My prayers are with you.
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...my Ray too, Joie....1/11
still working through the emotions
we'll catch up later.........debs