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.

Wednesday, July 13, 2011

Blessed by a great event

So, it was a hot and sticky day for Steve-Stock!  But a whole lot of my friends and family made it out to the venue.... listened to some music, and helped Jordan and I raise some money to cover the costs of the medical bills and such due to my kidney failure. 

What a day.  Seriously.  I saw so many people I hadn't seen in years; hugs, talks, handshakes abound..... it was a serious outpouring of love.

It really helped bolster my spirits - though I feel like I should have talked more about my disease and what it does to me.  People STILL, after seven years, have little idea of what the kidneys do, why they're important, and the effects of the disease on me.

I know it's hard; we live in a world where everybody's got their own crap to deal with.  Sometimes, though, it makes me sad that people I'm close with don't know anything about what I'm dealing with.  People know that I "need' a kidney transplant, but they think that's some kind of cure.  Which it is not - it's just a better form of treatment than dialysis.  I will always have kidney disease, and that WILL be what ultimately kills me. Probably at a younger age than I'd like.  Dialysis is a COMPLEX procedure.  You don't just do it, and go on your way - like taking a pill.  Not having kidneys and requiring dialysis means that your blood doesn't clean itself and you don't make urine.  Some people are surprised to find out I don't make urine.  That I haven't peed in almost four years.  Imagine drinking a nice, tall cold drink - and then simply going to pee later.  It's a great relief.  I do not know that feeling.  I get what I can ghost-pee syndrome, where I feel like I have to go - quite badly, but nothing happens.  It's like an intolerable itch you cannot scratch. I also get the old "You don't look sick...." line.  That's common with kidney patients; aside from a little bloating from water retention, a lot of times we look normal.  But we feel like crap. Plus, when people see me in public, it's merely because I feel well enough to be seen.  Which isn't often, when your blood is filled with the wastes it normally excretes.  I'm tired a lot.  I trudge around a lot because I just don't have the energy to walk, head high with gusto.  It sucks.

I hope everyone had a good time, though.  The bands were great, the food was great, the items for the auction were spectacular and everyone who came out to help was amazing.  I truly have some great friends out there.

I don't ever want to throw another benefit, though!  The stress will kill me!  But maybe when I get a kidney, I'll throw a party as a thank you to the peeps that came through for me during Steve-Stock.   That would be fun.  Except this time, I'll throw the concert outdoors in a park or something!

~Steve

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