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Monday, June 13, 2016

The "Misunderstanding My Xzibit Meme"

Good Monday morning. That sure is a clunky title. But yeah. It the subject. And no, I as a person don't feel that was, but I as one of many who are on dialysis do feel that way. The text of the meme reads, "Yo dawg, Heard you were dying of kidney disease.  Nobody gives a fuck". Of course I tried to explain what predicated the meme. I was lamenting the fact that over 650,000 people in the United States  are in complete and utter kidney failure. The point of no return. 650k+ of us on dialysis. 650k+ people doing dialysis trying to stay alive. The majority doing incenter dialysis 3 days a week for up to 5 hours on each of those 3 days. Having fluid removed from their systems. Having blood moved out of their bodies to be cleaned and then returned to their bodies. And their organs being shocked by the entire process...each and every time they do dialysis. 

For the people doing home hemodialysis, they do treatment up to 7 days a week for 2,3,4 hours a day depending on their conditions. For people doing peritoneal dialysis, they must do exchanges 4-5 times a day otherwise fluid builds up in their system. Oh and let's not forget each and every one of us are highly susceptible to infection. Life threatening infections. Dialysis wears our hearts out. Our blood pressures go up and they go dangerously down.  Take off too much fluid and we cramp. We cramp like you've never experienced. Imagine cramping horribly every other day. And to add insult to injury, you're stuck in a chair with 2 needles in one arm and and blood pressure cuff on the other arm. Prisoner!! 

So the point of the meme?  I mentioned that more often than not  prayer requests for every illness get posted on my Facebook timeline for every disease and condition under the sun. Except End Stage Kidney Disease..also known as kidney failure. How is it that 650,000+ people who have a condition for which there is no cure are left off these lists?  Is it an oversight or are we being overlooked?  People think dialysis is a dirty little secret condition? Or is it people don't know about it?  The discussion was initiated in one of my support groups. Honestly, it wasn't the first time. 

The text of the message in the group that initiated the discussion. 

Am I politically incorrect? Am I insensitive?.. am I unfair? .. or, worse, am I utterly out-of-line? ... 

Or, do you, the unheard, unsung, unrecognised, unfriended masses on dialysis sometimes feel 'left out' of the national/international health or illness frame? For one, I think you are. 

Every weekend, there is a walk for breast cancer, a bike ride for prostate cancer, a fun run for hearts, a telethon for kids hospitals, a football game for motor neurone disease, an intersection can-rattle for the disabled ... but, I cannot remember - ever - more than a whimper for you ... the millions who, for a minimum of 3 times every week, for 4-5 hours (or more) at a time, for week after week, for year after year, and with some of you reaching into your 4th decade of this ... sit, connected to a dialysis machine. 

Of all the chronic illnesses, yours is the most unending ... yet who walks for you?

How can you get more exposure, support, and public sympathy on the inter/national agenda? 

It saddens me, every day, to see you .. my heroes .. unsung.

Recently, an international icon died ... with Parkinson's disease, yes, .. but also ON dialysis. The icon was revered! .. but the circumstance of his passing were ignored. I do not dispute his greatness ... not for a moment ... but I dare suggest that the sorrow and plight of 'the circumstance' may have demanded more attention. 

Had he died of some a rare cancer, I dare to think there may have been national/international fund-raisering walks within a week. 

That he died on dialysis passed un-noticed. 

As that, to me, is sad ... any ideas?"

I've been blogging about ESRD since January 2013.  I want you to know and understand what it is and what someone who has it has to go through. How it is clearly life changing. And I want you to pass it on. I'd like you to be involved. When I was in Detroit, I got quite a few pledges for walking for the National KIdney Foundation...close to $2000.00 in 2 years. And that was great.  I shouldn't complain. But I'd have preferred your presence, walking with me. And here I am in Las Vegas, which does not have a chapter of the NKF, I have to work through Southern California. *sigh* 

So. Anyway. When posting the meme, I wasn't I wasn't inferring that my friends and family don't give a hoot. But I'd like you to help me with remembering and acknowledging ESRD. Spread the word. Awareness of ESRD saves lives. It can help research to make the dialysis process less harsh. It can lesson the number of people who,have a heart attack during dialysis. That was the point of the meme. 
I posted the meme on the groups page. Lots and lots of likes by people with ESRD. Understand though, there are hundreds of thousands of people on dialysis who do feel that nobody gives a hoot. 

And finally, I want to acknowledge the people who responded to the post. It means a lot to me. Thank you. 

That's it for today. Enjoy your day...and be grateful your kidneys are working. 

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