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

Tuesday, September 30, 2014

Another tech week

Here we are in the most stressful part of the rehearsal process: The first Monday of tech week. 

I am so excited about this production.  There are so many awesome things going for us here.  The set is really unique and compliments the story so well.  At times I feel like I am actually in a webpage.  We had a snafu with an exit that has challenged the production more than maybe I would like, but I know it will come together before we open.

This ensemble is really entertaining to watch.  They all have such different personalities, and my favorite moments are the ones in which I see them actually having fun with each other within the choreography.  I love what they have added to my story.

Today I met with Alice, a PR representative for the hospital where I get my infusions.  She was so wonderful.  She asked if I could do an interview with her in exchange for the medical props she was giving me.  Are you kidding?  Of course!!  It's times like that when I really take stock of all of the opportunities that have come out of having my disease, and that still continue to present themselves to me.  The fact that I am in Chicago working with amazing artists on an original piece came out of aHUS.  I have met so many new people and made friends out of them due to aHUS.  I have reconnected with tons of people from my past because of aHUS.  I get to apologize for hurting people and rekindle old friendships.   

What an amazing consolation prize for being sick.  I am so lucky.  I can't imagine how my life would have been without aHUS.  How ordinary would I feel?  How unappreciative of my life would I be?  I'm so glad I have been given this chance to really live the kind of life I always wanted.  Maybe I am feeling a little sentimental, but I'm so happy to be alive.  I will try my hardest never to squander any opportunity I get.

I feel lucky.
I feel humbled.
I feel love.
I feel Chicago.
I feel life.
I feel grateful.  I feel grateful.  Grateful grateful grateful grateful grateful....

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