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

Sunday, September 6, 2015

A Long Overdue Update

The last time I posted a health update was over a month ago, and I apologize for that.  Things have gotten wild.  Chemo and Plasmapheresis have taken up a lot of my time, and there have been some, ahem, setbacks in the process. I'm going to post the updates in a few entries.

Let me start with the beginning of September. Remember, my doctor was resistant to a chest port tunnel line, as he told me things would be temporary, as in lasting one week. My mom came to help out, thinking this would be one horrible week. Just one.

 Here's the gratuitous picture of all six kidneys together. :)

 And here is a pre sugery picture, when things were seemingly smooth.

The tunnel line surgery was a little unusual. It turned out that I just wouldn't fall asleep on the surgery table, so they had to keep giving me different kinds of drugs to knock me out.  They gave me four times the dosage of Demerol it usually takes someone for my size to go out, and at one point I heard them ask for Benadryl (it multiplies the impact of narcotics-many drug addicts ask for a cocktail of both in the ER). So because of the high dosage I was on, it took me about 24 hours to be able to function on my own.  As I mentioned, my mother was visiting to take care of me and it was a good thing she did. Because about five hours after I came home, I started vomiting and never stopped.  ALL NIGHT LONG.

Matthew and Mom rushed me to the hospital because my chest port started bleeding, which they told us was a reason for the ER. The OU ER was totally full, so they suggested heading a half hour north to Edmond, which also ended up being totally full on a Monday night. So we then headed to an outpost ER in Edmond and not one person was there. My drugged up mind remembers the nurses playing poker when we walked in... that can't have been real.

They treated me with IV fluids while I kept throwing up the nothing in my stomach. I was literally telling her my med list while I was vomiting. Fortunately the chest port stopped bleeding, and they sent us home with anti nausea medicines (one of which was a suppository. I stopped throwing up before needing to use those.)

It turned out I had a C. Diff infection.  C. Diff is caused by overexposure to antibiotics. I have had so many infections that it led to another infection in my intestines. Hence the vomiting and diarrhea.


But there I was, chest port in place, ready to start chemo and plasmapheresis to save Apollo. Easy right? 

No. Not easy at all.

1 comment: