Just sharing

[MyssAnne]

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.   

[Joanniebop]

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

[thegrammalady]

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"

[MyssAnne]

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.

[Joanniebop]

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

[paris]

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.

[The Wife]

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.  

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!

  

[MyssAnne]

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!

[Joanniebop]

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

[The Wife]

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!

[MyssAnne]

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! 

[The Wife]

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. 

[KT0930]

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.

[kitkatz]

Sometimes whining is the only thing you can do.

[The Wife]

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!

[The Wife]

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.

[KT0930]

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. 

[The Wife]

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. 

[The Wife]

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.  to me.

[MyssAnne]

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.

[The Wife]

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.

[MyssAnne]

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.

[The Wife]

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. 

[MyssAnne]

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!! 

[The Wife]

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.