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

Tuesday, January 21, 2014

For Bianca

There is a girl in Australia.  Her name is Bianca and she has aHUS.  She, unlike me, does not have access to Soliris, or Ecluzimab.  If you have been following this blog, you have probably seen the older pictures of me in hospitals with tubes coming out of me, sitting on a machine.  That was how I lived before Soliris.

The sad truth is Bianca could die from aHUS.  It has caused her kidneys to fail already, which means she has to do dialysis every day for about four hours, and then plasma exchange (a very similar experience) for another four hours.  This was also my experience.  It was soul-sucking. 

So some of my students and I have decided to put up a fundraiser for her to raise awareness and money for her cause.  The admission for the show is completely free.  We are only asking that people pay what they can.  The show is being produced by Hartel Dance Group in Oklahoma City.   Here is the show poster.  If you want to see some really interesting dance and movement pieces done by local artists, stop by and have a glass of wine with us. 

Can't come to the show?  Don't live in Oklahoma?  Here is the part where anyone can help her, even from across the world.  I have put up my paypal button again at the right.  If you want to donate any money to her cause, every cent will go to her in a lump sum from For Bianca.  Please help this 17 year-old reach her 18th birthday.  aHUS people have a tendency to give back times 1000 once they get better, trust me.  This girl will be amazing. 



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