Words

A brief note about what going on with me

Editor’s note:Ok, I wrote this in August and posted it to friends associates and family. But what i am writing references to it so…It seemed to make sense to repost it here. I am not secret about it, it is just an aspect of my life not all of it. But what I am writing for today relates to it so read it , and now that tomorrow ill go back to complaining about the media….……………………………………………………………………

a brief note about what has been going on with me
Friends, associates and other folks,

I wanted to write a brief note about what has been going on with me, Not that I want to put the rumor mill out of a job, but I ‘d rather say it once definitively then have a million depressing conversations.

The big news is: I have Kidney disease, in particular one called IGA Nephropathy, or Berger’s Disease. Personally, I have chosen to call it Harold. (Here is a more solid description of it , or if you want way more information overload then check out http://www.igansupport.org/) It is currently without a cure; I really don’t like that incurable word, so I am choosing not to use it. Simply hasn’t been cured yet.

It’s the most common form of kidney disease in the us, but strangely not the most popular in the US ( gee, it sounds like my taste in music) . Its not fatal, well not if your in a country with modern medicine, it is serious though; it s sort of a fatty acid that stops your kidney from processing protein correctly, side effects include high blood pressure and high cholesterol, both of which help to make the disease progress. It’s vaguely hereditary, (my dad has it though he is convinced he does not, and it is a mass conspiracy against him, man I hope lunacy isn’t a side effect…)

One big thing is what a difference the Blood pressure makes, for the past few years , I found myself easily agitated constantly anxious, a lot more emotional then I had ever been, and of course out of breath. Now that’s completely different, I feel like I am in fighting shape again. Its like having blinders taken off, and snap, its that simple you can function a few million times better. What every one told me the nervousness of entering you late 30’s and bad work stress was instead an illness, thank you medical industry, now if you could have told me three years ago.

I am at 40% functionality in my kidneys, you need of dialysis or transplant at 15%. So I have a ways to go, and hoping to never have to go there. Some doctors say 1 in 4 with this will need dialysis or transplant, , some say anyone who has this and lives long enough will need it. Personally I am hoping for the former. Transplant doesn’t cure this either it’s in the blood, Quite frankly it seems that Harold doesn’t know how to take a hint. Some say you can go into remission with the right amount of homeopathy.

So I have an unwelcome house guest, that I am doing my best to make peace with, there is no magic pill or potion to make it go away, they treat the symptoms. I am on cholesterol medicine, High Blood pressure medicine and some other things that your grandparents are on. When I was diagnosed a typical blood pressure for me was 147/118 ( for those who are not in the blood pressure know, that is bad; fat guy in nursing home eating ribs bad) today I hover around 114/65 (that’s good, Jack Lalane good). I go to the gym on a regular basis, and to date have lost like 30 pounds- its amazing what a good motivator disease is for weight loss. Of course I am truly astounded by how tubby I had gotten. Other then that I had to cut down on liquor, give up aspirin. They tell me that’s how to keep it in check, so that’s what I do.

I see the doctor every three months and that’s really it, I am not in any pain (well save after too heavy a workout) and I am sometimes fatigued, but hey at least I have an excuse now!) As far as your major diseases go it could be a hell of a lot worse. Yes its scary, but not a lot I can do about it; you play the cards your dealt. How you play them is up to you.
So that’s the story, I apologize for doing this in a Blogand not saying it right away, but I need the time to get my head around it and its not like it was information that has an expiration date. It has taken me a few months to accept this, I wanted to feel like a “guy” when I told people, not a “guy with kidney disease”. It just took a little time to get to that place. I do not to feel broken. I do however feel a little scuffed. But isn’t that to be expected?

So now you know, and as GI Joe told us, knowing is half the battle.

Your Pal,

C

PS: totally serious about the not dying thing, So please don’t act like I am fragile, cause that really ooks me out.