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

Tuesday, March 12, 2013

A look back: Transplant Day 2

So day two was pretty much a blur.  I seriously tried to get to my blog, but I just kept falling asleep with the computer in my lap.

I woke up and the doctors came to tell me my numbers.  My creatinine was 11.6 before the transplant and it was 6.8 on day 2.  My phosphorus was LOW!  I wasn't allowed to eat at all on day 1, and on day 2 I was allowed nothing but clear liquids.  The doctors were thrilled with Matthew's kidney.  It was making so much urine, I needed more saline just to keep up with it.  They had given Matthew and I clicky pain killers that we can click every 8 minutes.  It is nice to be in charge of that, but when you fall asleep, you wake up in pain because you haven't been clicking.

And, I am just going to say this:  They just don't give you painkillers like they used to.  I remember ten years ago being totally high so much in the hospital, and it was so awesome.  It was the ONLY bonus to being there!  Maybe I just have such a built up tolerance I don't feel anything anymore.  It is not easy to get even light sedatives these days, and its a damn shame if you ask me.  The closest buzz I got was just from the IV Benadryl, and that is pretty weak.

Soon after they left, Matthew had come over to see me.  he was a little groggy, but I think he felt like it was his turn to make the journey over.  He now doesn't remember these pictures.


                                                                                    poor guy


Here is the difficult thing:  You have been through all this crappy hospital stuff for years, you get used to the pain and the drugs and the discomfort and the vulnerability.  But then you take an organ from someone who has never experienced anything like this and it knocks them on their butt!  And all you can do is watch and say, "I'm so sorry."  It is really hard to describe the emotions that come.

We spent the day visiting each other and taking walks.  Someone snapped this picture of us walking.  We would hold hands and talk.  It felt so nice to be able to be together experiencing similar pain for the first time in our lives.  There is something about sharing pain, and there is even more when it is CHOOSING to share pain that results in less pain for both of you.  I can't even try to describe the experience.  What an amazing week we had.  


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