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

Sunday, December 29, 2013

Photo Shoot for University of Iowa

They came in!!  Here is the Photo Shoot that Matthew and I did for the University of Iowa.  There were a ton of pictures, but these are our favorite.  Photos taken by Lacy Hammack at Adoralee Studio in Norman, Oklahoma. 


Friday, December 27, 2013

Tuesday, December 24, 2013

Showgirls and...what was I talking about?

Great new things happening!

I have recently hooked up (in a business kind of way) with my good friend Lynn Crowe, who owns Teaze Dance and Fitness.  It is the pole dancing studio I have been learning from on and off for the last three years.  Honestly, since I first went to their first anniversary party I have wanted to be really involved with the studio, but I just kept getting sick.  I took classes there for about six months and even got to be a solid level 2 "Pole Fox".  Level three was really hard because I just kept bruising so badly from inverting I had to stop.  I had no idea I had a blood disease at the time, so that explained a lot!

But I have recently agreed to be the Assistant Director for the Oklahoma Showgirls.  The Showgirls are a dance team that perform at events around Oklahoma City dressed as all kinds of cute and beautiful things.  They are a really talented and fun group of ladies, and I am really excited to be working with them!  I even went to a last minute event dressed in a Naughty Santa Baby type costume and it was really fun. 

So along with that, I have started up with classes again.  I have had to start and stop so many times, and I just miss it.  So this week I went to two classes.  I am sore and that feels awesome.  I even think my body will hold up past level 3 this time!  What I would give to be a "Pole Minx!"

This week has been difficult for my memory issues, and I have been really starting to wonder about it.  Matthew tries not to get frustrated, but at least once a day he has to tell me something I should remember that I don't.  We missed a breakfast yesterday morning with friends because he didn't put it in his calendar, but it was the first time I had heard we were doing it.  Dr. George, my blood specialist that helped diagnose my condition, has asked me to attend an occupational therapy appointment to see if they can offer me tools to cope with it.  So until I get to that neurologist, I will have to really be diligent with putting things in my phone to remind me what I have to do.  If you are someone that experienced my forgetting something we talked about, I apologize.  I am diligently working on it.

Thursday, December 12, 2013

9 months!

Last week Matthew and I hit the 9 month mark of our transplant, and my numbers are suddenly really awesome.  Yesterday the doctor said creatnine was .9 (normal is .8-1.3)!  That's awesome!  I mostly feel pretty great  these days.  I have a lot of opportunities flooding in from my professional website, and I feel really good about the chances to get out of Oklahoma for them.

I am getting an article published for the first time.  It is based on my Intimacy for the Stage techniques.  It is a great chance for some exposure, and after I wrote it I realized the book I have been longing to write was staring back at me.  So hopefully I can get started on that soon.  I will post that link when it goes up.

Side effects update:  I of course am ever battling the weight gain but am not overweight yet.  I have gained 30 pounds from transplant as of now, but I am still in the average BMI place.  My other body functions have come back to normal now, and my hair has stopped falling out.  I have tons of baby hairs coming in that I have a hard time taming, but I am so happy to see them.  There have been some emotional side effects as well.  The depression and anxiety started right after the transplant, but I wrote them off.  I thought it wasn't a big deal, just low self esteem from the weight gain.  But after I went on medication for it I suddenly felt amazing and happy again.  I don't like depending on a med to feel better, but I accept it is necessary for now.  Of the big side effects I face now, the worst is ...the memory loss.

I have started to lose portions of my memory.  I will forget things that happened, or I can't place when things did happen.  This used to be an issue with aHUS and kidney failure, but it has gotten worse in the last month or so.  When I attended that dinner for aHUS and TTP patients, I learned it was normal for our diseases to have neurological side effects like that.  It was then that I started noticing how much of a problem memory loss is for me.  The other day, Matthew and I were walking into our apartment building and I suddenly didn't know where I was, like a button was pressed and I couldn't remember where the elevators were.  It scared me, but it only lasted for about two seconds.  I also find that friends mention things we have discussed before, and I don't know what they are talking about.  I am usually too embarrassed to say something. 

Here's the funny thing:  My doctor referred me to a neurologist, and her office called me today to make an appointment.  She said, "The earliest I can get you in is April 7th."  I laughed at her.  Really??  I took the appointment though.  I hope I don't lose all of my memory before I get to see her.

I had some 9 month boudoir/pin up pictures taken and I think they turned out pretty awesome.  I wanted to document the changes in my body with my health and it is clear in these I have gained weight from the transplant.  I really don't mind (ok some days I do mind.  I am still a woman!), and the pictures have helped my self esteem a lot. 

Here's just a sneak peek.  They haven't been edited yet.  These are just straight shots from the proofs.  I had them done at Adoralee Studio in Norman.