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, November 30, 2012

Maybe it's the toxins talking?

I yelled at my doctor today.  I may have even used profanity.  Let me explain.

For the past six months, my doctor has been suggesting for me to get a fistula in my arm for dialysis.  A fistula is like the port in my chest, but it stretches your arm vein into an artery so that it can handle the large blood flow of dialysis.  It is permanent.  I mean, really permanent.  And if it screws up, my arm vein is screwed up for the REST OF MY LIFE.

NO.  I am not interested.  Besides, my transplant will happen before the fistula even heals.  Why on earth would I get one?  Yes they are safer and less prone to infection than my chest tubes, but I am planning to get back to my life as a professor and actress as well as a pole performer.  People will not want to look at my fistula pumping out of my arm as I am trying to play Lady Macbeth some day (actually that might work for her).

So my doctor, who knows I don't want a fistula, mentioned to all the dialysis nurses that I didn't want one.  He told them not to even try to convince me because I am vain...nice.

So today when he suggested it again, I yelled "SHUT UP!! NO!"


"Are you still going to try to get a transplant in Iowa?"

"Yes, they are waiting for my insurance to change to a PPO on January 1st.  Then we can start testing donors.  We feel more comfortable with them because they have done these kind of transplants and are confident it will be successful"

To that he says, "No one is confident they can do these kind of transplants.  The research isn't even documented."

I know that Iowa knows what they are doing.  They can carefully monitor my aHUS while I am there so that it stays under control.  Oklahoma can't do that.  Hell, they can barely keep me alive as it is.  Every time I go to OU Medical Center I am much closer to dying than when I am walking around anywhere else.  That place is terrifying!  The doctors are great, but the nurses have made way too many mistakes with me.  I trust Iowa.  I am an educated person, and I have done my research. 

It scares me that my own doctor doesn't feel confident I can have a successful transplant.  He thinks my next transplant might fail too.  But I will be in Iowa's hands soon, and they are the ones that need to have confidence, right?

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