Sometimes the forever-ness gives me a jolt

[Deanne]

Last night I was taking my meds before bed, wondering if I'd have even more meds to take once I have to start dialysis. The permanence of kidney disease gave me a jolt, as it sometimes does. This is my life. It'll never be any better, but it will get much, much worse. I've never known normalcy because I was diagnosed young (9 years old).

Then I shrugged and crawled into bed. I think it just hit me again because in the past few months my nephew was diagnosed with FSGS (my diagnosis), and my brother was just diagnosed with prostate cancer that has spread to a lymph node.

[kitkatz]

I have been dealing with the foreverness of it all, too lately. 

[boxman55]

I have been dealing with the foreverness of it all, too lately. 

What's with that... I have recently also been thinking about it too... Boxman

[Sluff]

Hang in thereDeanne, Kitkatz and Box, it's a tough road and those around you have no idea.  We care.

[stauffenberg]

I don't know your transplant history or prospects, but I can say that, although endstage renal failure is a permanent condition, it can become a purely theoretical issue, visible only in your medical records, while you have a functioning transplant, since you feel, look, and act just like healthy people.

For some reason greeting card manufacturers seem to share the ordinary person's presumption that what always happens when you get sick is that you go to the doctor or, if it is really serious, to the hospital, get treated, get cured, and then come back home and you are fine.  So the greeting cards you get when you become sick always say, "Get well quickly!"  I always thought that for renal failure, diabetes, multiple sclerosis, Huntington's disease, and all the other incurable diseases, they should have cards that read, "Get worse slowly!"

[paddbear0000]

I always thought that for renal failure, diabetes, multiple sclerosis, Huntington's disease, and all the other incurable diseases, they should have cards that read, "Get worse slowly!"

  Although, if I actually got one, I think I'd be sad.

[Deanne]

That's so appropriate and I love your sense of humor Stauffenberg!  



EDITED:  Fixed  icon - Goofynina/Admin.

[MyssAnne]

So true, Stauffenberg!!! I have gotten get well cards that say that, get well soon. I just look at them and shake my head. I ain't GONNA get well soon. All I can hope for is to get worse later!!!

[goofynina]

Sorry you all are feeling that way, call me guilty for feeling the same way too, but i snap out of it and say, this is still MY life and i have to make the best out of it dammit!!! (then i go and lay down and take a nap) lol,   All we can do is hang in there and make the best of what we got, and let me tell you, i couldnt do it without all of you thats for darn sure 

[Stacy Without An E]

I understand exactly where you're coming from Deanne.  As I was taking five different medications before going to bed I realized how expensive it is to keep me alive.  And then I wondered if I, as an individual, am really worth all this trouble.

I too have been dealing with this condition since I was ten years old.  Two kidney transplants and a total of five of my thirty seven years on Dialysis.  I've known since I was young I was living on borrowed time and given the medical technology, if I had been born thirty years earlier, I wouldn't have survived.

It's all too much to think about sometimes and I try not to get overwhelmed.

When I finally get to heaven, God sure has a helluva lot of explainin' to do.

[paris]

I liked the word "forever-ness".   It seems with so many illnesses, people get sick, go to the doctor and after a certain period of time - they are cured.  Simple--but not with organ failure. It helps me to hear others voice their fears, concerns, and dissapointments.   Thanks for sharing your feelings with us

[Rerun]

I too have felt that I am not worth $40,000 a month to keep alive.  I can get on such a huge soap box on the cost of dialysis or medical care in general. 

I too have felt that "I'm never going to get better only worse" so what's the point of trying.

But, something keeps me going.  I think it is God.  He put me here for a reason, even if it is to suck Medicare dry.  But, I know through his sacrifice on the cross I will live in eternity (forever-ness) with Him.  I'm looking forward to that.  But, my time will come and it is not today.

[kitkatz]

If I put the word forever and dialysis together in my mind I freak out big time.  So I have to take it one day at a time.

[okarol]

More times than I can count, since Jenna's transplant, people say "Oh thank goodness she's cured!" I know the reality of kidney disease - it's good while it's good but life with kidney disease is a constant state of adapting and learning and hoping and treating it the best way possible. I get a great deal of encouragement reading other people's stories here on IHD - you truly are a resilient and courageous group!

[Lulu]

  I have been thinking about the forever-ness of this lately too. Some days I just wnat to throw my fricking pillbox off of a cliff. Of course, I live in Florida the fricking flatest place on the planet (besides Kansas)!! No cliffs here!! Damn!  I agree with rerun! I start dialysis soon. I have to meet my access surgeon next week and I can't help thinking what is the point of all of this?? If I was my own pet I would of had to have been put asleep a long, long time ago. Matter of fact I had to put my beautiful shetland sheepdog "Pepper" down 12/13/03 for something way less benign than kidney disease. I know this is not a reasonable comparision. It is just every once in a while I think why am I still here?

My local restaurant has a sign that says "Having good health just means you're dying at a slower rate." 

I think "the good health people" don't always have the "why am I here and what am I here to do?" conversation as often with themselves as we do. The sicker I get the more I have those thoughts.

Thanks for this post. It is nice to know I not alone with these thoughts.

[angela515]

Great post Lulu.

Even though I now have a transplant, and I pray it lasts longer than 20 years since it's a perfect match... however.. I can't help but think about when I am going to be going on dialysis again, as I do know unless I die in the next 20-30 years, I will be going back on it in my life time. It sucks to know that... it's depressing to know that in fact. I just try to focus on the "now" and look at my beautiful children and am just thankful I have been given this chance to live as normally as possible for however long with them.

 

[kitkatz]

"We all have to die--everyone of us.  It is how we choose to live that matters. After all, it is the only life each of us will ever have, so how we live is of paramount importance."    Quoted from Richard, in Terry Goodkind's book Confessor Pg. 75

[zekewolfy]

ME TOO. I ponder on how worse things will get. I know I won't live very long. I know my wife will move on and find someone else after a time and have a normal life. What did we do to deserve such a curse? I can't help but cry and cry and cry. I remember having a NDE when I had my AV fitula put it.
I think I saw what comes after this miserable existence. It was a place of peace, and calmness. When I was there I wanted to stay but told it was not my time. I guess I had a LOT MORE SUFFARAGE to go through. This disease is horrible,it makes you hate yourself and everyone and everything around you. I don't know, maybe I am trying to do to much, work full time and support a household. I don't know how long I can keep it toghther anymore.

Sorry..just venting!!

[Ken Shelmerdine]

I feel for the young people on this site who have to dialyse. I can't imagine what it must feel like when you're  not able to live life to the full at a young age. At 59 years old I'm dealing with this I think easier than if say I was twenty years younger and I'm so lucky that I am staying well and as yet not debilitated. To all on this forum who are suffering, especially the young I send my love and best wishes.  

[KR Cincy]

The forever-ness is overwhelming. Actually, so many steps in this journey have been overwhelming. Hearing the words "cancer", "nephrectomy" and "dialysis" for the first time as they related to me...no longer in some far-fetched clinical sense, but all of this had to do with me at that moment.

I don't know if I've yet fully realized that I'll never be the same as I once was. Even if I do make it my five years before I'm allowed a transplant and get one, I'll be 51 and, as I've learned from my time on IHD, the transplant isn't the end, just another beginning.

I know I struggle with the things that make me abnormal as I begin doing more and more "normal" things...those things that are different stand out even more now - the scheduling 4 hours a day for treatment, the pills at every meal, the diet, the nasty way my arm looks from the fistula and sticks, the not being able to have a beer with friends while watching the Buckeye game.

But I'm still here, and I'm not in pain (usually) and I'm not suffering and, for the most part, I'm doing all the things I was doing before...maybe in a different way, but I am living my life. I hold out hope for huge advancements in transpant therapy and dialysis...I hope to do something positive since I'm in this position (I'm already signed up to do some volunteer work for the American Cancer Society and the Kidney Foundation of Greater Cincinnati) and if I can not let the forever-ness get to me, I might just stick around for awhile and be happy about it.

[kitkatz]

I know I am not the same person I was nine years ago.  I have changed.  I had a near death experience when all of this happened and made a choice to return to this life and be here for now.  It changed the way I look at life that is for sure.  Dialysis is going to be a part of my life whether I work with it or not.  Sigh!

[Bajanne]

But it also gives me hope that I will see my grandson grow up.  People like you who have gone nine years and are still going, on dialysis, do that for me.  So keep on keeping on, forever!