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

Monday, February 3, 2014

For Bianca

This weekend, 11 OU students and I devised a performance for Bianca Scott, a 17 year-old with aHUS that doesn't have access to Soliris.  She is in the same situation that I was in when I was missing half my blood,  sitting on the plasma exchange machine, and watching my kidneys fail.  So we adapted Dancing in the Storm into a mini play about her instead of me.  Originally we were going to remount Dancing in the Storm as it was done at OU in October.  But too many cast members developed conflicts and had to drop out.  Just as I was about to give up on the project, Tatum, one of the cast members told me she really wanted to do a project still, and that she could find others that agreed.  I won't lie, I felt a little down that some of my actors had backed out of the project so late and began moving on thinking nothing would come of it.  But then I talked with Austin Hartel, the founder and owner of Hartel Dance Group.  He told me I shouldn't drop the project completely.  He said, "Go and see what the rest of the students are willing to do, and make something else happen.  Give them a chance," 

Now I understand that he was telling me that when you run your own theatre, things fall through all the time.  You come to expect that, and you have to move on anyway.  That is how theatre and art get made: by getting back up after you fall.

I went to that rehearsal and there were eight students wanting desperately to make theatre.  They actually suggested doing a fundraiser for Bianca.  I was flattered and humbled by their interest in her situation since I feel a deep kinship with her, despite the fact we have never met.  And that meeting was the origin of For Bianca.  We talked about how we could tell her story using scenes we already had choreographed from Dancing in the Storm, but we could change the wedding into a prom, and change the husband into her mother.  We all saw what the show could turn into that day.  There was no way we could cancel any more.

In three weeks and about twelve rehearsals, we made a piece of theatre that was better than Dancing in the Storm would have been.  We made a new story that was bigger than us, and all of us could feel it.  Local theatre companies offered us chairs, lights, money, whatever they could to help.  The idea of a raffle came up when one of my friends, Adele Wolfe (a Burlesque Artist in Oklahoma City) offered tickets to her show and suggested a raffle.  After I said the word, "Raffle," every theatre in town threw season tickets at me.  Businesses gave gift certificates, parents gave money, and For Bianca was suddenly an explosion of meaning.  

On the last night of the show, which ran for three days, I stood in front of a crowded standing ovation and tears came to my eyes when I realized they weren't just celebrating the art we made, they were celebrating the fact that they understood exactly why this was important to me.  They were giving of themselves what they would have done for me if I couldn't get Soliris.  Bianca was there with us in that room, and I was the embodiment of her for them.  As a humanist, it was the equivalent of a religious experience for me.  A christian would have said they felt god in the theatre.  But really I felt the energy of over a hundred people making sure that I felt their support and love.  They were happy I was alive.  It was magical, and I am so thankful that I survived to see that night.     

Bianca, if you are reading this, you have changed the world by opening its eyes, and the world will not let you disappear.  I believe that.  I find myself writing to you as if you are a voice in my head, or a distant pen pal that knows my heart.  When I say "the world", I am included in that.  Because, Bianca, you have changed me too.  And I will do everything in my power to make sure you get the fair chance you never deserved to have taken from you in the first place.  I know.  You think no one understands.  And the truth is they don't.  Not even I understand.  But we don't have to understand to be able to help.

After the show, we celebrated life, freedom, and the spirit of humanity.  We danced, we drank, we hugged, we kissed, and we raised $2100 for Bianca.  There are more payments coming in online.

 If you want to donate to help Bianca, click on the Paypal button on the right side of this blog, and give $5, $10, or whatever you feel you can.  I have word that one of my student's father's corporation will be contacting me to match whatever we made through the performance, so everything we make will be doubled.

Special thanks to Jon Haque, his chest hair, and CityRep, Rachel Irick and Oklahoma City Theatre Company, Tyler and Erin Woods and Reduxion Theatre Company, Inc., Tracey at Mi Amor Studio, Adèle Wolf and Adèle Wolf's Burlesque & Variety Show, Marty Rogers and UrbanWineWorks, Michael Gibbons and Kathryn McGill and Oklahoma Shakespeare in the Park, Cafe do Brasil, Tom Huston Orr and the University of Oklahoma School of Drama for lending us costumes, a projector screen, and Zebra blocks, Lacy R Hammack at AdoraLee Photography, Mary Arbuckle and Other Options, Lynn Crowe , Teaze Dance, the Oklahoma Showgirls and the Oklahoma Pole & Burlesque Expo, Ross Johnson for filming, John Scamehorn, Chelsea Carter, and especially the Hartel Dance Group for hosting us.

I am overwhelmed, humbled, and so happy to be surrounded with friends.

A Super Special thanks to the Ensemble who made this project amazing:
Matthew Allan Holmes
Tatum Colette Price
Meredith Little
Anna Priestley LeFlore
Kate Le
Leo Chang
Blake Lee
Josh Bonzie
Courtney Johnson
Alexander Ferguson
David Ball

And of course, Matthew Ellis, for being my biggest and most loyal fan. It was our first time on stage together, and I hope it isn't our last.

Bianca's Battle, Oklahoma City and Kidneys and Pinups are fighting with you! You've got this!

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