The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Tuesday, October 12, 2010

Alone out here

Sometimes it can be lonely out here in the world of dialysis.

Before I was sick, I was a really active and social kind of guy.  I was out most every night, doing something interesting and hanging out with many different groups of friends. 

Then suddenly you become chronically ill, and everything changes - and inevitably, you lose a lot of those "friends" you had.  It's funny, often when you're young, you KNOW that the "friends" you have are really more aquaintances and that the relationships and bonds you form are fleeting - but it becomes painfully obvious how true that is when the chips are down.

I did "loose" a few friends when I got sick.  I don't blame them, really - it's hard to be a friend to someone on dialysis at times.  People don't understand kidney disease, either.  People also want to hear "Yeah, I was sick but now I'm better...." and that's something you don't hear with kidney failure.  I can't tell you how many times I've been asked "So, how much longer do you have to do dialysis?"   And I always have to answer with something slightly morbid like "Until I die."  It's the truth, though.  This is it for me.

And yeah, I think that's hard for friends to take - and for family.  I know that it's hard for some members of my extended family.  There's a bit of an "ostrich with it's head in the sand" syndrome with them.  Everyone's aware, but often times I feel like they pretend it's not.  And sometimes that hurts.  I can't blame them - everyone's got their own issues, and I try to remain as concerned for theirs as I'd want them to be for mine.  But sometimes I want to scream "I'm sick as hell!  You have no idea how bad I feel day to day!"  I'm sick of hearing "You look good, what have you been doing?" 

"Not eating because I feel like crap!" 

or hearing whispers of "He doesn't look so bad......"  Yeah. That's because anytime you see me in public, it's when I feel decent enough to drag my carcass out of my house and off my chair.  And even then, I run out of steam real quick.  These days even more so - I feel like I'm moving through molasses every time I'm out and about.  I have trouble concentrating at times, because I'm just focused on staying conscious - sometimes I feel like I'm ignoring people, but I'm not.  I'm just wiped out.  Chances are, if you haven't seen or hung with me in a while, it's not because I've been doing anything awesome.  It's mostly because I've been doing nothing but sleeping or reading at home.

I am sick.  I'm also trying to live the best life that I can.  And, I do - I've still done some awesome and incredible things in spite of my lack of general health.  But every now and then, I need a little compassion and understanding.  Then again, I think everyone needs that -  I suppose that's where "the golden rule" comes in. 



  1. This comment has been removed by the author.

  2. Somehow I deleted my comment. I usually read this and write on my Droid while I am at work. Its so hard on that little phone, must have hit something with out realizing it. Again great writing Steve. I am trying to pass your blog on so others can read it and understand just how sick people like you and my husband are. So many people think just because you are on dialysis your cured, they don't realize that it is like life support it is just keeping you alive the minute you pull the plug (stop dialysis) your going to die. And while on dialysis you are no way cured, you are still sick as hell. I spend many hours crying because I feel so helpless, I know there is no cure for this damn disease unless you are one of the few lucky ones that can get a transplant, and many people just don't qualify to even get on the list, and if your lucky enough to get on a list you may die waiting. I look forward to your blogs!

  3. HELLO: Feeling very lonely, I googled for others like me on dialysis and came across your blog. It's a struggle every day to deal with my limited lifestyle, lack of friendship and depression. Thank you for writing about your experiences.

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