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

Friday, January 24, 2014

My Sore Butt

I am icing my butt tonight. 

I have a beautiful contusion on my left side posterior.  I was working with a partner in our show, For Bianca, and trying out a slightly dangerous tumbling move.  Something went wrong, we both lost balance, and I fell from a handstand directly onto his foot  onto my left hip, well rear hip area.  We both cringed for a few minutes, promising we weren't completely injured.  The thing is, I don't just bruise.  With my blood disease around, I sort of get demolished.  I usually take pictures of my bruises, and they used to be FAR worse before Soliris, but they still get pretty purple.  A year ago, this fall would have not only broken my 110 pound body in half, but I was on blood thinners so it actually could have killed me.  I love that I get to do handstands now, even if I fall from time to time.

Before I share my collection of bruise pictures, let me give you some background.

If my bruises are visible, Matthew gets looks.  Actually, any person I hang out with gets looks.  I used to meet up with my friends at bars with bruises all up and down my arms, most of them finger bruises.  It looked like someone was grabbing me and throwing me across the room at night.  I assure you, no one was.  I would get them from hugging.  I remember one time I saw a friend of mine for the first time in a while, and I ran to hug him.  He picked me up, and I wrapped one leg around his hip.  It hurt, but I was so happy to see him I didn't think about it.  The next day, I had an inner thigh bruise and a lower side back bruise from where his fingers squeezed me.  I got bruised from hugs, truly.  You can just imagine what the pole dancing was doing to me...

When I was in college, they called me "The Poster Child of Stage Combat"  because I always had a permanent bruise on my left shoulder blade, where I would roll on the floor.  I developed many nicknames throughout the years:  Bruisy Bruisinella was one of my favorites.  I even worked at a stunt show years later and had to roll on concrete to escape motorcycles driven by the Joker's Henchmen.  Let's just say it was a good thing my costume required pants and covered shoulders.    

But the really funny thing is my history of butt bruises.  Granted I have taken my share of falls from 5 inch heels, and I don't recommend it.  I don't know how tall people deal with falling.  

 But when I met Matthew in graduate school, we were assigned a swashbuckling scene together.  We were to choreograph the famous duel in The Three Musketeers between D'artagnon and Athos.  I played D'artagnon as a female, so we made it a bit flirty.  At one point, Matthew was supposed to whip me in the butt with his sword, and of course we rehearsed it many times.  Now, I didn't know I had a blood disease back then, but after getting hit solidly with a metal whip ever fifty times, anyone would get a mark (Matthew hits pretty hard in combat too).  A week into rehearsing this I was limping a little, and my professor, Aaron Anderson asked me if I was ok.  "I have a huge bruise from this scene!" I said, and pulled down my yoga pants to show him and the class.  Now looking back, that did seem a little bold, even for me.  I barely knew any of them at the time because it was only about three weeks into the semester.  But they all saw my butt bruise that day, and yes, my bright red panties.

On New Years Eve a month ago, Sabrina tripped me in the street and I fell, warranting a very painful bruise on my left butt cheek.  It had just healed until this most recent butt-astrophe.  I thought it would be fun to compile my bruise pictures for you.  So, here you are:  some of my favorite contusion memories.  It isn't Pin-Ups, and it isn't quite Kidneys, but I think it falls somewhere in between.  

I got this one from hitting my face of the car door when the wind blew it open.  This bruise lasted two months:

A bloody nose AND a black eye, but no one ever hit me.  I had a bloody nose for about six months.

Here is that thigh bruise I got from the over zealous hug.  Notice all the other bruises I have:

Transplant bruise.  This one was legitimate:

My post IV bruises:

And here is my newest butt bruise on day 2:

 And day 4.  They always get worse before getting better:

I think this one is going to last a while...

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