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

Tuesday, April 2, 2013

On our own!

My mom left to go back home yesterday and Matthew and I are on our own now.  Yesterday he went to work from noon until 6pm and we wasn't totally wasted by the end of the day!  I drove him down and picked him up too.  So the only thing that is difficult is carrying heavy things, but we are getting creative about that.  Garbage can be put into 5 pound bags and carried down more often.  Laundry is tricky but we are managing.  Sabrina is the heaviest thing we have to lift and I have a creative way of getting her in the car now (she hates getting into cars).

So things are slowly getting back to a routine.  I wore heels yesterday, my belly has lost some of the swell already, I am able to walk Sabrina fairly long distances, and I am fitting into my largest jeans comfortably.  I have lost about four pounds since transplant but I don't think I will go back to the 115 I was before.  I am just so darned hungry all the time.  I know the steroids are influencing me but it feels as if I haven't eaten in years, and I have no ability to stop eating things I never craved before, like chocolate!  I hate eating chocolate!  I have never craved it ever.  I always thought it wasn't worth the calories and now it's like an addiction.  I think Matthew's kidney is making me crave sweet things.  I always favored salt before. 

Other than that, my numbers are still looking good.  My creatinine went up a little, but not to a dangerous level.  I think I just need to drink more water, and I have no problem with that.  My scars are completely healed and now all I have to do is get my blood drawn once a week and get my Soliris infusions every two weeks. 

I am also writing a play about all of this.  I hope to put it up in the next year or two.  I have a lot of it hashed out already, but it will be a pretty large project and I don't know if I can get a space to hold it at OU.  I am excited about it though, and I also found out I will be directing a show in the fall.  It will be in a small space, or even a found space, so I can't do the show I started writing.  A former student of mine, Erin Crossley (formerly Erin Stanley), is going to help me write a new piece for the fall.  She has a fantastic eye for movement and has written some of her own work as well.  It will just be so amazing to finally have some output of creative energy for the first time in a year. 

I find that I am impatient to get back to working out.  It hasn't even been four weeks and I want to go back to dance classes.  I am starting to do some mild abdominal exercises today.  I know that if I jump on this pole in my apartment I could tear something and recovery would be delayed.  But it is so tempting.  Like Matthew says, "Can't keep Baby off the pole."

Also, I am lining up my post transplant photo shoot.  Coming soon. :)

1 comment:

  1. hello,

    my names are Robert Lawson, a 38 years old, the doctor confirm that my two kidney well OK that i can use one kidney, and i want to give out one of them to who ever needs it, because in my life i made a var that i will save life know matter what it will take from me. of what use it is to me if i can not help that one ding soul. do not ask me why, because it is what i have made up my mind to do.
    i pray that you will not die but live.

    You can contact me on Email: robertlawson09@gmail.com

    Mr Lawson.