Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!




Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Wednesday, May 31, 2000

Sophomore year

During my sophomore year of college, I didn't really perform much.  I didn't get cast in mainstage shows.  I wanted to believe it was because I was so sick, but now I know it was probably just because I was a sophomore girl.  It happens.  But I needed the time to focus on the life changes of living with a chronic illness.  It isn't easy, especially as a college student.  I had to watch my friends drink, pig out, sleep around, and party when I had to watch my diet, take pills, and get more sleep.  

But I worked my butt off in classes.  I suffered steroid side effects which deformed my face and gave me intense muscle pain and weakness, making ballet and stage combat really difficult.  Having your body betray you while you are trying to control it as an artform is a constant struggle.  They called me "The Poster Child of Stage Combat" because of all the bruises I used to get (and now I know why I had so many of them).  

I had really supportive close friends that brought me to doctors when they could.  Back then, the only way to test your kidney function was to collect your urine in a jug for 24 hours and turn it in for protein testing.  I was taking eight classes a week, and most of those days I was going from class to class without any time between.  So yup, you guessed it.  I had to carry my urine around with me in a duffel bag to my college classes.  It became a big joke with my close friends.  It was really embarrassing when it sloshed around, but what was I supposed to do?  It was one of the reasons I wore comfortable clothes everywhere I went.  I had to carry four bags: One for books, one for dance clothes, one for pills and bananas (for muscle cramps), and one for urine.  Yeah, I was cute.

But I survived my sophomore year and by the spring they had tapered me down to a manageable level of steroids.  Sure there was some horrible gout experiences and massive steroid rages.  But my kidneys calmed down and I was basically trying to preserve them as long as I could.  

I always joked that eating total and bananas with skim milk every morning while my room mate ate skittles and pepsi was just unfair.  I had always struggled with my weight and my health kept me from really enjoying my body.  The idea of posing for a pin up picture was THE LAST THING i ever would have done at this point.