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

Sunday, September 13, 2015

A Long Overdue Update: Part 2

We had to postpone plasmapheresis for a week because of the C. Diff infection. It would be too dangerous to start it while fighting C. Diff. So Mom went home, and we prepared for the battle.

The first week went as smooth as you might imagine.  I demanded we perform everything outpatient so I wouldn't have to be admitted overnight and miss my first night of Macbeth rehearsal. It was more work for my doctor, as in more phone calls, but I got to sleep in my own bed each night and still go to rehearsal.

The plasmapheresis went as well as you imagine.  It leaves you shaky and weak. and the chemo injection site hurt horribly. I couldn't sleep because of the pain in my arm. I didn't learn until week four that it was possible to be given intravenously to avoid the pain and bruising.  Of course...amateurs.
                                      
After my first two treatments, it was revealed to me we were doing this for FOUR weeks, not one.  When I confronted my doctor with this information, he denied ever saying it would be one week. But I reminded him of the temporary groin port he had wanted me to get that would have only lasted one week, and he confessed the groin port would have been a mistake. It just goes to show you, kids, QUESTION EVERYTHING. Because they aren't thinking of everything, and the numbers are most important. Your convenience isn't always the first priority even if that means putting you under the knife more often sometimes. 

I also stopped leaving the apartment for all other occasions in order to avoid contact with other people and hence, infections. If I did venture out, I had to wear a mask and gloves.

 But Matthew and I kept optimistic about the progress, despite the fatigue and nausea.  It was all worth it to save Apollo. He is the most important thing, and the light at the end of this tunnel.



Meanwhile I got pictures back from a shoot I did with Photographer, Ryan West, before the surgery.  I love them, and they were really fun to shoot! Yes, that is my wedding dress, and it is so much cleaner now! No one ever suggests jumping in a pool to brighten it up, but it really works! :)






Photos by Ryan West Photography.





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