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

Friday, February 8, 2013

Small World?

Ok, so we got the blood pressure machine!  Matthew is wearing it now!  The sob story worked, and we were able to pick it up this morning.  It is absolutely amazing because of this:

Melanie, the woman in charge of getting us the machine asked Matthew what he needed the test for.  He told her our story about the transplant.  She told him she gave a kidney to her 14-year-old daughter 11 years ago.  Matthew, being the smart guy he is, asked her if her daughter happened to have aHUS, because that is what I have.  She said, yes, actually she does (but hers is just HUS because she wasn't an atypical case).  She was a baby when the disease took her kidney, and her mother gave her one.  When Matthew told her that I have aHUS, she smiled and said, "Of course, it all makes sense now.  That is why you are having this test sent to Iowa.  You must know Dr. Nester!"  Dr. Nester is the amazing pediatric nephrologist who is working my case.  She studies aHUS as a specialty.  Melanie knew her and said she talks to her frequently!

So you can thank God, or the universe, or fate, or luck, or whoever you thank when things go right.  Because this time things actually did!!  (In this case I am thanking Melanie and Cindy from Oklahoma Transplant who "sold me her first born child" to get me on the top of the list.)

So tonight we ordered food so we wouldn't have to cook, I gave Matthew a two-hour massage, he fell asleep, and now he is playing video games.  He doesn't have to work tomorrow, so it is a nice, calm evening.

So send calm thoughts tonight.  Hopefully everything works out and we will know something soon!  

PS.  Just booked my next photoshoot!  More pinups coming soon!

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