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:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ 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, July 5, 2015

Head above water

I was going though old pictures, and I came across this candid Matthew took of me three years ago when we weren't sure how I would get through aHUS and kidney failure. I see this picture now and I'm so glad we took so many pictures of me at the most difficult times.

This was me at my lowest. I'm bruised, tubed, and underweight, but smiling, enjoying life, and surviving. My advocacy speech is about this very picture, and helping other people find their survival tactics. I'm not perfect by any means, but I've been through a lot. I'm happy to have survived, and I regret nothing about the tactics I had that got me to this point today. I'm stubborn, bold, and I tell the truth even if it's off-putting or makes people uncomfortable. I'm an optimist, but I observe and critique everything. I always ask myself if I am getting everything I want from experiences so that I can challenge myself to drink every drop of life from each situation. There were many points in my life I wasn't sure how much I would get to do with my time left. This picture is one of those points.
 
Discomfort is a sign that you are being exposed to something from which you can learn. I struggle but truly enjoy being uncomfortable emotionally. After all, it's better than not getting to feel anything at all. Because of what I have been through I see and experience the world in a different way, and this can be really confusing to others. Documenting my life with pictures helps because I can go back and look at them to remember the hardest times.
 
There are, even today, people (new, very surprising people) that want to stop me from being ME. I find it hard to believe that I still need to defend my survival strategies, but that is why I give the speeches I give. I might get down for a few days pondering if the words spoken behind my back are true. Am I really a bad influence? Are my actions really so outlandish that a small amount of people who don't know me very well absolutely want to silence me and put me down? And is all of the push back worth it for me to express myself truthfully?

Then my head comes above the surface of doubt and I remember that every day I wake up and do my best. I simply do what I think is the best I can do for myself and others. I love advocating so much, and I will never stop doing it. And I can change the word, advocating, in that last statement to a multitude of other things:  Teaching, Public Speaking, Blogging, Intimacy Coaching, Directing, Performing, Modeling, Boudoir, Pin-up, Having Fun, Living In The Moment, etc...It doesn't matter. I have put my life on the internet, so I get it that people will scrutinize and sometimes bully me. I chose all of this. But for every person trying to stop me, there are ten people who support me for who I am. It's all part of being someone who pushes the envelope. 
 
I'm just someone who is happy to be here, and I simply want to have my little impact on the world while I am on it just like everyone else. If one door closes for me, I have a hundred other doors to walk through. Opportunities are truly everywhere, even if I have to build the door myself and walk through it. 
 
And I have a hell of a lot of experience building those new doors. :)
 
 
 
 



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