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, November 10, 2013

Another show come and gone

This weekend I made a return to the stage.  The last time I was in a show was the summer of 2009, before I got sick.  I played two relatively small roles.  The last large role was in 2006 as Lala in Last Night of Ballyhoo.  Acting in Oklahoma had become sparse for a woman who looks 20 but was nearly 30. 

Last night I had the privilege of performing in a one act called Sleepwalkers with Joe Dougherty as my partner.  The show was a modern dance performance called, What's Love Got To Do With It?  Joe had played Matthew in Dancing in the Storm, ironically.  When I signed on to the project I didn't know how intimate and physical it was going to be, but it evolved and we made it more realistic than it had ever been performed.  

Also, we were the first actors to ever memorize the script.  It was originally performed in the 60's at OU.  The playwright, Skip Largent (who I met last night at the performance) updated it throughout the years.  It is the single most difficult script I have ever memorized.  It reads as a poem, and the lines overlap as we finish each other sentences.  So the partners are completely dependent on each other.  If one of us got lost, the other did too.  It was a fantastic exercise in partnering and trust.  

I am sorry we only had two performances, because I think shows hit their stride after the second performance.  Last night felt great, and I am sad it is already over. 

My body cooperated with me for the first time I can remember.  It stayed healthy and strong, even under stress.  My partner caught a cold that I didn't catch, even though we were kissing all week.  I think I am actually starting to develop a trust with my body I have never owned before.   I became so used to expecting it to fail miserably when it came down to something I really wanted to do.  My illness has prevented me from performing, teaching, directing, and  even from attending weddings, reunions, and funerals.  It just might be that I am beginning expect success instead of body betrayal.  That, to me, is the most amazing part of all of this.  

This is only the beginning.  I see myself coming back to life, and I am beginning to let go of all of the struggles of the past, while remaining optimistic of the future.  Not just optimistic, excited and freaking pumped!

Tuesday, November 5, 2013

My new friend.

I want you to remember how I was a year ago this week.  I dressed as a doll for Halloween in my dialysis clinic to cheer myself up, then came home in a wheelchair and threw up the rest of the day.  I wrote my monologue about feeling abandoned, betrayed, angry, and sad.  I was at my absolute lowest.

There is a girl in that same place right now, except instead of having had kidney failure for 15 years, she just got it six months ago.  Instead of being 32, she is 22 and terrified.  Instead of having a husband with health insurance, she has a baby and no insurance.  This illness came out of nowhere for her.  And she can't afford Soliris to get better. 

Remember when I told you all that Soliris costs $500,000 a year for aHUS patients?  Well, that is the cost from Alexion, the company that makes it.  My explanations of benefits say $52,000 every dosage.  EVERY DOSAGE.  And we need it once every two weeks.  I will let you do the math.  It is horrendous, and we need it every day for the rest of my life in order to survive.  This girl doesn't have insurance, and Obamacare doesn't kick in until March.  That still gives her five months she has to wait to get her life-saving drug.  

Something is wrong with this picture.  I don't know if things are getting better with health care, but no one should have to be a billionaire to afford to survive.  Understand that people like her and I don't care about politics.  We don't have time!  We are just trying to survive.  It is the only important thing.  And we have to leave the bickering to those in charge and trust that they will make changes that will help.  That is the frustration of living with a chronic illness like this.  It isn't cancer.  It doesn't have a huge billion dollar industry to make sure we get all the meds we need.  It is a rare disease that will ultimately end up killing those of us who can't get treatment.  

I am one of the lucky ones, but there are many more like me out there that need help NOW.

Monday, November 4, 2013

New Project!

I have been so busy, I have forgotten to blog about this!

I am performing in a show this weekend.  It is called, "What's Love Got To Do With It?"  It is being produced and directed by Austin Hartel, the modern dance professor at OU.  He is also one of the original members of Pilobolus, which I studied in my thesis.  It inspired so much of what I do now.  I am so excited about doing this show.  

My scene is slightly sexual in nature.  I have to kiss and have simulated sex on stage, which isn't scary to me of course.  However, choreographing and performing are two different things.  I feel really good about it though.  My partner, Joe, is fantastic to work with, and we have had a lot of fun with the script.  It is the first time I have performed since 2009.  It just feels so good to be on stage again.  Hopefully it will lead to more roles.

After this show, I am working on the remount of Dancing in the Storm.  I need to write a few more scenes, which I am thrilled about.  I think I will try to add the first transplant this time.  And maybe some more oompf to the transplant.  Who knows?  I am just excited to do it again.

Also, I have a bunch of photo shoots coming up.  One of them is for the University of Iowa.  They want to use the story linked above and need some more pictures of me and some with Matthew.  I am so excited about it.  I am also doing a Christmas pin-up shoot as well.  eeeeeeeee!

It is funny how many doors have opened since the show closed.  I launched my new website, www.toniasina.com and already I am scheduling workshops and shows for spring and 2014.  It's funny.  Nothing motivates me more than people trying to hold me back.  I am sure everyone is like that, but for me it launches me so much farther then I ever expect.  I just feel so excited for the future opportunities coming up.

On a sadder note, there was a girl at the aHUS dinner and talkback last week that has similar health problems as I did.  She hasn't been confirmed aHUS yet, but it looks very close.  I saw in her eyes the frustration and sadness I felt once, and my heart goes out to her.  I know what rock bottom feels like, and she doesn't even have the energy to be mad any more.  She has a wonderful family support system though, and I know they will get her through this.  Hopefully she checks out this blog (which of course I gave her) and gets some ideas from it.  After all, that's mostly why it is here!

So many doors opening!