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

Sunday, February 23, 2014

How lucky am I?

This weekend I was a guest judge for a pole competition, burlesque show, and pinup pageant at the Oklahoma Pole and Burlesque Expo.  I just have to express how happy I am to be able to do the things I do now.  So many opportunities coming this way.



A year ago I spent my days like this:

I am a very lucky woman.

On Monday I am doing a Dark Sorceress photo shoot with a local photography company.  I am super excited about that one.  I haven't done a fantasy shoot yet.

And in a week, I will be doing my one year kidneyversary shoot with Mi Amor Studio.  It is also the one year anniversary of my first Boudoir shoot.  I had tubes coming out of my chest, and weighed about 30 pounds less than I do now.  Those tubes are totally going to be my props for this shoot.

And in April, I will officially be teaching Intimacy for the Stage at the Lousiana Tech Stage Combat workshop, The Boil.  This is really exciting as I have never taught at a stage combat venue before!

Meanwhile, in Australia, Bianca's blood pressure was totally normal. This is huge, considering aHUS makes you walk around with blood pressure like 170/125.  That used to be my norm.  Soliris starts helping right away.  But Bianca's Mom ,Tammy, has spent over $80,000 so far, mostly from donations to keep Bianca alive. It's a huge injustice. My heart aches for them, and I wish there were more I could do to help.




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