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, August 31, 1999

The beginning of the adventure

When I was a freshman in college at Niagara University, I was a healthy normal theatre major.  I took eight active classes a week, performed in plays at night and helped build sets when I wasn't on stage.  It was the time of my life.  At the end of my first semester, I suddenly got really sick.  I was coughing like crazy, and my fever shot up to about 103 degrees.  I was getting ready to go onstage for Stomp U, a student devised one act, when I suddenly started wheezing and had trouble getting air.  My director insisted I go to the emergency room, so a few friends took me.

The people at Mount St. Mary's (We used to call it Mount St. Scary's) told me to go home, take tylenol,  and open a window.  No saline, no drugs, and they barely touched me.  So for two weeks I did just that.  It took me about two months before I could breathe easy again.  I thought everything was back to normal (aside from a huge breakup with my high school sweetheart that coincided with this event).

In the spring I was cast in a fantastic musical called, Steel Pier.  It was a huge deal, since we got to meet and work with Candor and Ebb.  They came to help adapt the play so that it would work for us.  It was like workshopping a new play at times.  The show was a huge dance piece, and I was dancing more than I ever had in my life.  At the end of the nights, my feet would be swollen.  I thought it was from the dancing so I didn't think much of it.  But by the end of the show, my feet could barely fit into my shoes.

Of course I was distracted by end of the year college things (boys, theatre, boys, parties, boys, exams, boys) so I didn't think about my feet.  I was mostly barefoot or wearing these horrible Birkenstock sandals anyway (I was a weird hippy back then - no make-up, bandanas, sandals WITH socks!!  Ugh, who was I kidding?).  So when I went home to Chicage I showed my mom, and she thought it was probably the dancing too.  But I knew she was a little concerned.

We asked around.  I looked it up.  Edema, it was called, the retaining of water.  I would push my fingers into my ankles and my skin would cave like play dough and hold the impression.  It was getting worse and I couldn't wear any closed toed shoes anymore.  I put off seeing a doctor until the end of the summer (boys, work, boys, theatre, boys..) when my mom dragged me to see my pediatrician.  He took blood and called us back in to tell us the news.  KIDNEY FAILURE.

In my mind it happened in slow motion.  I couldn't hear him anymore.  He explained calmly to my calm mother (who I know was freaking out on the inside but always had a way of keeping her shit together on the outside) while I was screaming in my head, "NO THIS ISN"T HAPPENING!  I HAVE TO GO BACK TO COLLEGE NEXT WEEK!  I HAVE TO BE AN ACTRESS!!  I HAVE TO BE AMAZING!!!"  We went home and I stayed fetal in my room for the rest of the day wondering what would happen to me.  He told me I needed to see a nephrologist, kidney disease can't be stopped once it starts, and I would one day need dialysis or a transplant.

Now looking back I sure wish I had handled things faster, but no one in my family had been sick.  It seemed impossible.  Even the nephrologists were baffled as to how this happened to someone with no genetic tendency towards kidney failure.  But I took a deep breath and braced myself for the future.  I decided to go back to college despite my family urging me to stay at home.  I knew I would crumble without school and theatre.  So I sucked it up, went back to Niagara and prepared to be a college student with a chronic underground life as a sick person.  How hard could it be, right?