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

Friday, October 26, 2012

Control


Out of my hands. 
Everything.
My body
My life
My sex
My choices
My career
My husband

I see a gorgeous mountain scene in front of me, with a pretty babbling stream and a great off-road trail.  The sun is shining and the breeze is soft and perfect.  I am ready to put the car into gear.  But I can’t get over this stupid first crack in the pavement.

Imagine knowing everything you want to happen 20 steps ahead of where you are, but you can’t get anyone else to help you get there.  WHY DOESN'T ANYONE SEEM TO SEE HOW URGENTLY I NEED HELP??!!

I just need a transplant.  I just need that kidney inside me.   It sleeps next to me every night, tucked inside the person I love more than anything.  He protects it for me, keeping it safe for the day I will be able to take it and begin dancing again.  It is so close to me, but a universe away from helping me feel any better. 

Breathe...


I have him.   And he is worth it.  What we will be is worth what we have to go through now to get to it.  At least we had this summer.  What a great summer it was.  I spent all summer in the city with Matthew.  And it was my favorite.

(Again, coming back and reading this entry, I sounded like a psycho.  Its like I was about to cut him open and steal it myself.  This disease is crazy)


No comments:

Post a Comment