elle joue... she plays.

Thanks to a bout of ornithophobia (fear of birds), I momentarily disregarded my medical advise, and got my run on today. It’s crazy how much I missed counting and timing my footsteps while running. Thank you, psychotic campus birds for scaring me to run away lol.

Excuse the sick looking photo… dorm room photo circa 1999 - only one I could find from the time around here.  This is my face of kidney disease.

The first time I was told I had a kidney infection was the strangest day.. I was a 17 year old, away in school, was walking up the stairs from the cafe and fainted. Not the glamorous kind of fainting you see on tv, but the awkward, in the stairwell by yourself, knock yourself out cold from head hitting something hard, kind of fainting. What made it so strange was I didn’t have any symptoms that REALLY stood out, just some mild pain in my lower back, I felt more nauseous than usual, and my belly was swelling. Where those seem like things that most people would notice, there were outside factors at play like the fact that I just moved on campus and was making an adjustment to eating that food and I did not dance or do any physical activities when I started college.

I don’t remember waking up from the stairwell, but I do remember being in the hospital at EVMS. The doctor told me I had a kidney infection, and it was a possibility of some other things that he thought he was sure of but needed to talk to my parents first. The waiting for them to get to Norfolk seemed like forever, but anyway fast forward and long story short…. After talking to my father and some tests, I went from healthy, but underweight, to having stones in one kidney and a right kidney loaded with cysts.

My paternal grandmother had it and ended up dying from kidney cancer during my father’s junior year in college. Things have changed a lot since then, like kidney transplants can help a pkd patient live relatively healthy lives. I was fine with just a few stones passing as my main issue until recently, when a cyst bleed began. Up until now, I basically had forgotten I had it. When I’m healthy, I work out and eat healthy, so it’s hard to even tell I’m sick when problems start.

1 in 500 people have polycystic kidney disease. This number is only based on the people who are diagnosed, and diagnosis is many times missed due to the symptoms looking more other issues like high blood pressure.

My goal is not only to spread awareness about PKD, but to spread awareness of the fact that end stage renal (kidney) disease (ESRD) is one of the major killers of minority and lower socioeconomic children in the US. 

I’m 31 years old. I have PKD, but it doesn’t have me.

This may or may not come off as rambling and I apologize.

I love to run. I really love to play golf and dance.  Right now I can’t do any of those so I seem to stay lost in my thoughts 90% of the time I’m not doing schoolwork. Adding in the fact that I’ve always had issues with insomnia, my brain has been in overload of academia and “what ifs.”  

• What if my illness gets worse?
• What if I get to right in front of the finish line, again, and end up not able to complete?
• What if I finish and can’t get into graduate school or get a job that can support me?

I’m utterly overwhelmed by much more than that, but it feels like pure whining when I either say it or write it down.  I keep trying to put on this “strong face” like I’m not walking around an utter mess, and spitting the most optimistic rhetoric about the situation.  You know, the “at least I’ll have an excellent story of something I overcame to write about in the future” type statements.  oh well.

It’s hard to be the she plays/elle joue that I named this tumblr, when I can’t play anything. (lol)