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, February 22, 2013

So what a day!  We got the news in the morning, and had to make a hundred phone calls to tell people the news.  And then our Facebooks exploded so quickly we couldn't even read them fast enough.  We had to put our computers down to get a break.  It was awesome.

So March 7th is the big date.  I have to be up there on the 5th.  I think they might be doing some extra procedures on me to prep me.  It isn't like my last transplant.  They may have to replace some plasma or give me extra Soliris.  Matthew has to be there the 6th, so we can go up together.  That makes things easier.  Well except the issue of getting there is complex.  Here is our dilemma:

If we drive up, both Matthew and I won't be able to drive the car back down because neither of us will be able to drive with our bellies sore and stuff..  So we need to take planes so his parents can drive him back here eventually and maybe I could fly back.  But if I fly back I need to set a date, and I don't want to set it too early.  I might need to have more Iowa time.  But too late, and I am stuck away from Matthew longer than we need to be.  Also, plane tickets from OKC to Iowa are soooo expensive!! Two small airports = airlines rob you.

I know, it's all tedium but the details are tough.  We aren't worried about it though.  I think we are willing to walk there at this point.

March 7th date means Matthew can recover over his spring break.  It's perfect!  I like the sound of March 7th.  By the time we feel better, it will be hot out again!  And I can bikini up my HUGE DUAL  TRANSPLANT SCARS.  Symmetrical and hardcore.

Also, my boudoir shoot got moved to Tuesday, so I am still doing it before the transplant.  Yay!  I will try to take my own pictures at the shoot.

Thanks for keeping tuned in to our drama.  It will all come to great use when the play gets written (it's already started!)

   

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