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

Saturday, June 1, 2013

The honesty of Recovery

There are some things that don't go perfectly when you recover from a transplant, and I assume other illnesses.  Here is the difficult part that no one tells you: getting healthy is hard.  Going from sick sick sick to , "Oh! Everything is better, just enjoy now!" is not easy. 

For one thing, there is guilt here.  Guilt that I am not using my time wisely.  I took an organ out of someone and I am not doing anything that feels important with it. 

I don't recognize this healthy body. For one, my skin and hair are oily!  I think that is normal, like for normal people.  I was told that when you are healthy your skin releases more oil.  Well I got used to not having that and now I feel gross a lot.

It sounds petty. It is petty.  The steroids take their toll.  They make everything small seem like you can't handle it. 

The weight gain.  30 pounds is average.  I don't want to weigh 30 pounds heavier.  I'll just say it: I am Vain.  I loved my skinny sick body.  It felt small and frail and I could hide my sickness in it.  People could pick me up like a baby.   I can't believe that being sick was what got me so small.  I thought, along with my family I guess, that I had some control over it.  Alas, aHUS and kidney failure diet extreme style.

I get antsy.  I want to go to work.  I want to teach.  I want to do theatre.  But life has moved on without me here and I can't just step back in.  All the momentum I had with my career before has gone up in smoke.  Everyone has adapted to not having me around.  And I guess I adapted to it too.  I was never a hermit, but I sometimes find myself not wanting to see people.  I don't have anything to talk about.  I don't work, I don't do anything interesting.  All there is, is blood numbers.  Fascinating.

I started going back to my pole dance studio this week.  To do something, anything.  I am not getting on the pole yet, because I don't feel ready.  But I am trying to build up to that.    It will take time.

I don't mean to sound as if everything is hopeless because it isn't.  I always wanted to be honest on this blog, and I have to say, recovery is not easy.  We felt like celebrities for a while there, and now all that is gone and it is just us, being normal, every day.  It's awesome and horrible.  That's being honest.

Making a difference is all I ever wanted.  It felt like I was doing that when I was sick.  Now I feel...unimportant.  I guess you could call that normal.  Being normal is hard, but I am adjusting to it.  Maybe one day I will be able to trudge though this steroid trip and get to the fun part of recovery.

I try not to talk about any of this.  That is what this blog is for. 

1 comment:

  1. Lovely lady, you make a difference everyday to the people who love you. And I know it it just my opinion but your curvy post transplant pin- ups are way sexier :)