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, October 29, 2013

Going back to Richmond

Matthew and I made our way out to Richmond to go to a friend's wedding.  I hadn't been back there since 2006, graduate school.  It ended up being a fantastic trip, which may even lead to some opportunities to go back.

I forgot how much I loved living in Richmond in the autumn.

Also, today is the launching of my new website:

 www.toniasina.com

It is my professional website for freelancing my intimacy workshops.  I have had so many doors open to me in the last month, that I needed to start marketing myself in a way that explains exactly what I do.  I already have about six potential jobs across the country lined up for 2014.  All of them take place outside of Oklahoma, too.  I won't complain about that!

Being sick has given me more opportunities than I could have possibly imagined.  Tonight, I am going to attend a dinner for aHUS and TTP patients at the University of Oklahoma.  I can't wait to meet more people like me! 

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 fiancé.  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. 

Tuesday, October 8, 2013

The Show is Closed


                                         (Chandler Ryan blogging in Dancing in the Storm)


I am sitting in my post-show depression, as is usual after closing.  I already miss the ensemble.  But it is a bittersweet feeling.  I can't tell you how many people approached me after the show who needed to talk to me about their own hospital experiences and horror stories.  I loved being able to connect with these people.  It makes me so proud that a piece of theater can evoke such a bond between strangers.

This play was only the beginning of its creation.  I am planning on writing another act to tell the rest of the story.  I left out a lot of details.  For example, the show only has one transplant, not two.  Also, it skips about seven years of struggles that Matthew and I had to overcome.  I am sure it will get done though.  After all, my last play, Between the Lines, was mounted three times before I felt really good about it.  Even that could have more expansion.

I wish I had my own company.  Maybe someday.

Change of subject:

I have had many instances of confrontations in my lifetime with males in positions of authority to me.  Any psychologist will probably tell you it stems from my relationship with my father.  It's true, we had some issues there.  But I just cannot stand when males try to control me, how I feel, how I act, or who I befriend.  I am speaking of men on purpose.  Women manipulate differently.  They are much more deceptive (and in a way more dangerous I am learning as of late).  But in my experience, men are upfront with their control tactics.  This sounds out of the blue, but it isn't really.  (Even if it is, it's my blog, right?)

I could name you male after male after male who has at first befriended, even loved me like a father or an extremely close friend and then turned on me.  I have had my heart broken so many times by these men, and despite the fact that there are two sides to every story, I usually end up being pegged as some kind of villain.  I have lost a lot to these men, simply because I am not willing to submit to something I feel is wrong or unethical.  So I get punished for standing up for what I believe to be right.  

One time I had a man whom I had never met (who I will not name) yell at me right in my face because I was holding auditions at a time that conflicted with his play's auditions.  It shook me so much I didn't know what to do, so I apologized to him.  I apologized for something that wasn't my fault.  I lost sleep for days, and I still think about that event.

After my aHUS took over my life, I had no control and I had no choice, but I never apologized to it.  I fought back.  I researched how to take control, I found the doctors who could help me, and I traveled on my dime to fix my body.  It gave me a certain amount of perspective.  If that same man came into my face with the same situation, I think I would have to laugh at him.  You?  Control me?  I don't think so.  In fact when I was at my worst, I remember thinking of that event and wishing it would happen again so I could have a redo now that I am so different.

In my play, there is a line that states, " We came back from the dead this year.  That happened, and it has changed us."  It HAS changed us immensely.  I may look young, but I am not a little girl.  I won't beg because I have more to offer than many people seem to realize.  I don't need pity, because I am actually happy with my situation.  I have seen sneaky sexism at so many different levels, I am so tired of it.  And learning methods in dealing with it is actually something I have to offer my students.  (Yes, the students see sexism too, they aren't stupid.)

For the first time in my life I don't feel like I need.  I don't feel like I have to stoop, and I don't feel like I have to be fake.  This is me, pin ups and all.  Take it or leave it.  If that makes me a villain, then I guess I am.  Matthew and I are two of the most honest people you could meet.  We trust everyone around us.  We always assume we are surrounded by friends.  And we are good to our friends.  If you are taking the time to read this, I bet you ARE a friend.  


                            (A picture from Dancing in the Storm)

This blog has 20,600 views now.  If maybe 100 of those views were people looking in disgust, that still leaves 20,000 other views done in support.  Thank you for supporting us, friends.

On to the next project!




Yes, I am aware of the math problem in that.  I assume the other 500 found me by accident.

Monday, October 7, 2013

Some Show Pictures

This was the poster we made for Facebook.  I love it.


                                                                                       
Pictures I couldn't put on Facebook, but they belong here.
Look how gorgeous Chandler Ryan is, chest port and all.




                                                             Pretty darned close, I think.

                                     This is one of my favorites.  We called it the Krishna.


Wednesday, October 2, 2013

Opening Night

It is late.  I just got home from our second and last day in the space our show will go up in tomorrow.  

It's beautiful.  The show is beautiful.  I find myself watching and forgetting to take notes sometimes because I can't believe it is finished.  I remember when I wrote the very first piece for this show, the transplant scene.  I choreographed it while I was waiting for the phone call from the Iowa doctors to tell me we could go ahead with Matthew's kidney.  I would play the song over and over and imagine how overwhelming it would feel to get the go ahead call.  Every time I listened to the song I cried.  I couldn't help it.  I even tried describing it to a couple of students once and realized there were tears in my eyes as I was telling them what was in my head.  I imagined how amazing it would be to be healthy enough to actually direct that scene after living it. 

So you could imagine this show is the most personal thing I have ever created.  And the ensemble..

Tonight the ensemble surprised me.  We hadn't choreographed the curtain call yet, and we had just gotten through the last scene.  It went to black out and when the lights came up, the entire cast was onstage.  They had choreographed their own mini movement piece with Erin and Aly while I was out of town last weekend.  I can't even describe it because just like movement I can't do it justice.  All I can say is that it was beautiful, I was crying like a baby, and it took my breath away for quite some time.

So of course I adapted their piece into the curtain call.  I love it.  It's half theirs, half mine.  Ok, mostly theirs.  But it's great.  

I don't have words to express to them how grateful I am, but words never were my strongest suit.  I have loved watching them grow in this process.  That's always my favorite part of any show.  This one is special though.  The choreography speaks for itself, and all I can do now is hand the show over and step back.  Opening night is the saddest and most beautiful part to me.   Suddenly my job is finished and I don't get to play anymore, but at the same time I get to watch the actors experience sharing all their hard work with the audience.   It's the beginning and the end, and I love and hate it. 

So tomorrow we find out what the rest of the world thinks of Dancing in the Storm.  No matter what, this has been one of the most rewarding shows to work on for me.  I am ready to share it.  With this production I send any negative lingering feelings I have left from my illness into the universe to transform into nothing but beauty, grace, and of course, 

movement.