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:


~ 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

Friday, May 8, 2015

I'm a pageant girl!

This last weekend, I was selected as a finalist to perform in the Stray Kat 500 car show's Miss Kitty Pinup Pageant.  It was my first time doing anything like this, and I am so glad I was able to do it. There were so many beautiful people I was able to meet, and each one had just as much inner beauty that made them shine.

I was contestant number five, Sina Star.  

I absolutely love the pinup culture. Look at all of these beautiful women! Each one was friendly and supportive too! I felt like a celebrity all weekend, because everywhere you turned there were photographers shooting pictures of you.

These last two are courtesy of KaraBelle Photography!  Aren't they pretty? :)

Many of the contestants were already friends, and some had participated in the pageant last year, but that never made me feel out of place.  They welcomed me immediately.

This is a picture of the Friday night pool party.

In the end, I won the the title of Miss Kitty Pick of the Litter Wild Card. It was a title awarded by the pageant staff, essentially. I like to say it is sort of similar to winning "Miss Congeniality" because of that. It was a great experience, and I had an absolute blast.

Health Update:

My kidney, Apollo (for those of you who are new to this site, Apollo is my husband's transplanted kidney), is hanging in there.  My creatinine is at 1.5 as of Wednesday. My doctor says I am "stable" but he isn't comfortable yet. The issue is that the antibodies I formed to attack Apollo are still in my body, even though my creatinine is stable. I'm immuno suppressed enough that I'm not technically in danger at the moment, but my doctor is weighing the options of what to do. He has steadily decreased my steroids to 15 mg now, but that makes him uncomfortable I can tell. Normally, I would get a central line in my neck again and do plasma exchange to get rid of the antibodies, but he doesn't want to be so aggressive while I'm stable.  But if the creatinine goes up (when, not if), we will most likely have to treat it with more force. I'm not willing to lose this kidney so fast, so I will do what I can to protect him.

But at the moment, I am stable and feeling just fine.

Also, I have been traveling around the country for atypical HUS Meetups, and giving speeches to other patients about my experience. I technically welcome them to the club, but I have an advocacy message that is part of my speech. I show some of my infusion pictures.  The message is:

Don't let anyone judge how you choose to survive your chronic illness. Do what you need to feed your soul. People may try to stop you by crushing your self esteem and not being understanding of what you have gone through. They don't matter, because they don't get it. Most of those people haven't been through something that tossed their mortality around. You get to do what you need to do to survive, and no one gets to say you are wrong.

Take it from me, this message is personal. I talk about my experiences in this blog, and around Oklahoma. All the judgement that comes so naturally to people from this area can be stifling.  Opportunities like this pageant or advocacy meetups remind me that I'm not crazy, and that I'm doing the right thing. Using pinup as part of my advocacy is a no-brainer. If I can draw awareness with my pictures, how can anyone say it's wrong? 

People that don't get it, that's who.