Just sharing

[okarol]

I'm not in the praires but I am in Canada.  Newfoundland - the most eastern province!!!  I really like that icon too  and I like your joke about gas. Wish that would work I'd be outside all day  - make sure I ate gassy food first - like beans!!!  Now I'm being unladylike!!  Who cares 
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!!! 

Hey del - are you thawing out yet? 

[Ohio Buckeye]

Where are The Wife and LL?

[annabanana]

I would really like to know where they are, too.

[The Wife]

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. 

[willieandwinnie]

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. 

[The Wife]

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...

  

[Ohio Buckeye]

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.
 

[The Wife]

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.

[monrein]

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.

[petey]

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   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."

[monrein]

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.

[st789]

People here understand and care for each other.

[del]

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!!! 

[The Wife]

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."   (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.

 

[The Wife]

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.

[The Wife]

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.

[The Wife]

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?

[Ohio Buckeye]

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.

[The Wife]

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.     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.

[MyssAnne]

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

[petey]

OB --  and  and  and  and  . I wish you lived near me and Marvin because we could all help each other out. 

[monrein]

  to those here.

[The Wife]

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.

 


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.

 

[okarol]

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.

[kidney4traci]

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.