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

Thursday, December 27, 2012

My hero

I have to take a minute to post about my husband.  I would write about him all day if I could.

When we met the poor boy couldn't even stomach to come into doctor's offices with me, let alone hold my hand.  Sure he visited me in the hospital, but I am sure he didn't sign up for that when we met.  Since we had only been together for one healthy year before my native kidneys failed, year two was a huge deal for us.

But nearly ten years later he is brave and solid.  He has held my hand through the bloodiest procedures,  seen me through the worst steroid rages (shouting nonsensical profanity isn't the best way to spend your time with a loved one), and helped me deal with every near death experience causing post traumatic stress (when I was suffering paralyzing panic attacks after a nurse induced overdose, he would pull out my laptop and make me watch "Too Cute" on Animal Planet until I could breathe again).  Now he is my caretaker, nurse, and partner in my home hemodialysis adventure.  He helps me set up the machine (he knows all the functions and how to hook it up to the water supply and all that stuff I really don't understand), he helps me take blood, and he stays with me every day to make sure I am taken care of.  I suppose one could say that a husband was supposed to be there for "sickness and health', but I am pretty sure many men wouldn't have stuck around for some of this.  And I have NEVER heard one complaint from him about any of this.



And all sickness aside, we have so much fun together.  Hospital visits are agonizing, but we always find a way to make them entertaining.  Maybe some of that comes from our deep theatre culture.



Long story short, he's amazing.  He loves like no one I have met (not just me, everyone), and he is one of the funniest people I know.  I am so proud of the man he has become.  And he gives me the strength to be the best person I know how to be.  He's truly my hero and I am so lucky that he is in my life.



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