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

Wednesday, October 16, 2013

Starting my thank you tour

So while Matthew and I were dealing with the really difficult parts of the illness, we decided that everyone that was supporting us across the country was going to be part of our thank you tour one day.  The thank you tour essentially consists of traveling to different parts of the country to see our friends.  We began this tour when we traveled to Chicago to see friends there before the transplant.  We made a speech at the SAFD Winter Wonderland Workshop thanking the society for donating to our health fund.  Later we returned to Chicago to attend a production called Below that our former students mounted with their new theatre company, Adapt Theater.  We also saw tons of Chicago friends who stopped by to hug us after the transplant.  We then traveled to Colorado for a wedding of two of our closest friends, Blaz and Ken, in September.  

I have since learned that this tour is really about saying the things I always wanted to say to people, but didn’t get the chance.  It’s one thing to write a message, and another thing to do it in person.  This week I went to my 11 year college class reunion.  This was postponed one year because I was too sick to go last year.  I flew to Burlington, Vermont to see one of my oldest and closest friends and ex-roommate, Tami.  She just got engaged and I needed to see her new life in Vermont as well as meet her fiancĂ©.  The decision to do this was entirely worth the extra money.  

After I spent the night with Tami catching up while drinking wine on her lake house boat dock, we drove to Syracuse the next day to pick up two other close college friends, Alexia and Mary.  We arrived at Alexia’s house (another former roommate) at 9:00 PM and the three of us talked about the good old days until 7:00 AM.  We had so much to say to each other.  We admitted old secrets, we apologized for old grudges, and we let a lot of emotions come to the surface.  They watched my production of Dancing in the Storm that I brought.  This meant a lot to me because so much of it was influenced by them. I started to understand them on a level I never could before.  We were all hurting in different ways ten years ago, and we all needed to grow up before coming clean about a lot of things.  It was amazing.

The next morning, we picked up Mary (yet another ex-roommate of mine) and the fun continued.  We drove to Niagara as we chatted about college years and stupid mistakes we made in the past.  It felt so free and open and honest.  I never realized how suppressed I was as a college student.  It felt good to admit to them that I was a mess of a 20 year old that was hurt and going through a really difficult time.  I never would have admitted that back then because I never wanted anyone to know I was sick.

When we got to Niagara’s reunion I saw my makeup and costume professor, Maureen Carr-Stevens, my theatre history professor and mentor, Dr. Sharon Watkinson, my dance professor, Terri Lynn Vaughan, and my stage combat professor, Steve Vaughan.  I made sure to take every opportunity to thank them for everything they did for me as a student.  So much of what I teach is because of them.  They contributed a great deal to my happiness now.  I also met Adriano Gatto, a facebook friend and colleague that teaches at NU now.  A large group of other fellow students (Kristin, Aaron, Melissa, Amy, Jessica, and their dates) were there as well and it was overwhelmingly warm.  

Then I spent the next day helping Tami find a wedding dress and trying to see as many people in Buffalo as possible.  I shared a drink with Frank Canino, a playwright that I worked with in Oklahoma once that lives in Buffalo.  He was so gracious to meet me out on a rainy night just to say hello.  I also stalked Paul Todaro, my former acting professor to get him to meet us out.  It just didn’t feel right to see the other professors without him as well.  He influenced me as an actor and director more than he will ever know or be willing to admit (he is extremely humble about it).  It was really nice to see him in person.

I saw my college RA and met her awesome kids, a friend from VCU I didn’t even know moved to Buffalo, and of course Tami’s family who have always felt as familiar as a distant home.  Tami and I felt so full of emotions as we left Buffalo, that I had to write all the experiences down. 
Two of my college professors have passed away since I last was in Niagara Falls; Tim Ward and Brother Augustine Towey.  It was sad to know I couldn’t tell them everything I wanted to say.  My illness has really made me understand the value of telling people how much they mean to you before it is too late.  I have so many people to tell things to that I don’t know if I will get to them all. 

I plan to get to New York, LA, Chicago again, Florida, Oregon, and so many more places where our friends are.  Matthew and I are going to Richmond for a wedding at the end of October.  There are a lot of Demons I left behind there.  That will be quite overwhelming, but I am ready.  I need to let those pains go, and I plan on doing that as much as I can and as much as the people I may have hurt will let me.  In all honesty, it has become an I’m Sorry tour as much as a Thank You tour.  I fully confess that.  As long as I am healthy I will try to be honest with people and tell them I love them and move on from any grudges I used to hold.  It simply isn’t worth the effort to be hurt.

What an amazing trip this has been. 

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