Photo Shoot for University of Iowa

They came in!!  Here is the Photo Shoot that Matthew and I did for the University of Iowa.  There were a ton of pictures, but these are our favorite.  Photos taken by Lacy Hammack at Adoralee Studio in Norman, Oklahoma. 

 

 

New pictures

Some pictures from the recent shoot with Adoralee

Showgirls and...what was I talking about?

Great new things happening!

I have recently hooked up (in a business kind of way) with my good friend Lynn Crowe, who owns Teaze Dance and Fitness.  It is the pole dancing studio I have been learning from on and off for the last three years.  Honestly, since I first went to their first anniversary party I have wanted to be really involved with the studio, but I just kept getting sick.  I took classes there for about six months and even got to be a solid level 2 "Pole Fox".  Level three was really hard because I just kept bruising so badly from inverting I had to stop.  I had no idea I had a blood disease at the time, so that explained a lot!

But I have recently agreed to be the Assistant Director for the Oklahoma Showgirls.  The Showgirls are a dance team that perform at events around Oklahoma City dressed as all kinds of cute and beautiful things.  They are a really talented and fun group of ladies, and I am really excited to be working with them!  I even went to a last minute event dressed in a Naughty Santa Baby type costume and it was really fun. 

So along with that, I have started up with classes again.  I have had to start and stop so many times, and I just miss it.  So this week I went to two classes.  I am sore and that feels awesome.  I even think my body will hold up past level 3 this time!  What I would give to be a "Pole Minx!"

This week has been difficult for my memory issues, and I have been really starting to wonder about it.  Matthew tries not to get frustrated, but at least once a day he has to tell me something I should remember that I don't.  We missed a breakfast yesterday morning with friends because he didn't put it in his calendar, but it was the first time I had heard we were doing it.  Dr. George, my blood specialist that helped diagnose my condition, has asked me to attend an occupational therapy appointment to see if they can offer me tools to cope with it.  So until I get to that neurologist, I will have to really be diligent with putting things in my phone to remind me what I have to do.  If you are someone that experienced my forgetting something we talked about, I apologize.  I am diligently working on it.

9 months!

Last week Matthew and I hit the 9 month mark of our transplant, and my numbers are suddenly really awesome.  Yesterday the doctor said creatnine was .9 (normal is .8-1.3)!  That's awesome!  I mostly feel pretty great  these days.  I have a lot of opportunities flooding in from my professional website, and I feel really good about the chances to get out of Oklahoma for them.

I am getting an article published for the first time.  It is based on my Intimacy for the Stage techniques.  It is a great chance for some exposure, and after I wrote it I realized the book I have been longing to write was staring back at me.  So hopefully I can get started on that soon.  I will post that link when it goes up.

Side effects update:  I of course am ever battling the weight gain but am not overweight yet.  I have gained 30 pounds from transplant as of now, but I am still in the average BMI place.  My other body functions have come back to normal now, and my hair has stopped falling out.  I have tons of baby hairs coming in that I have a hard time taming, but I am so happy to see them.  There have been some emotional side effects as well.  The depression and anxiety started right after the transplant, but I wrote them off.  I thought it wasn't a big deal, just low self esteem from the weight gain.  But after I went on medication for it I suddenly felt amazing and happy again.  I don't like depending on a med to feel better, but I accept it is necessary for now.  Of the big side effects I face now, the worst is ...the memory loss.

I have started to lose portions of my memory.  I will forget things that happened, or I can't place when things did happen.  This used to be an issue with aHUS and kidney failure, but it has gotten worse in the last month or so.  When I attended that dinner for aHUS and TTP patients, I learned it was normal for our diseases to have neurological side effects like that.  It was then that I started noticing how much of a problem memory loss is for me.  The other day, Matthew and I were walking into our apartment building and I suddenly didn't know where I was, like a button was pressed and I couldn't remember where the elevators were.  It scared me, but it only lasted for about two seconds.  I also find that friends mention things we have discussed before, and I don't know what they are talking about.  I am usually too embarrassed to say something. 

Here's the funny thing:  My doctor referred me to a neurologist, and her office called me today to make an appointment.  She said, "The earliest I can get you in is April 7th."  I laughed at her.  Really??  I took the appointment though.  I hope I don't lose all of my memory before I get to see her.

I had some 9 month boudoir/pin up pictures taken and I think they turned out pretty awesome.  I wanted to document the changes in my body with my health and it is clear in these I have gained weight from the transplant.  I really don't mind (ok some days I do mind.  I am still a woman!), and the pictures have helped my self esteem a lot. 

Here's just a sneak peek.  They haven't been edited yet.  These are just straight shots from the proofs.  I had them done at Adoralee Studio in Norman.

Another show come and gone

This weekend I made a return to the stage.  The last time I was in a show was the summer of 2009, before I got sick.  I played two relatively small roles.  The last large role was in 2006 as Lala in Last Night of Ballyhoo.  Acting in Oklahoma had become sparse for a woman who looks 20 but was nearly 30. 

Last night I had the privilege of performing in a one act called Sleepwalkers with Joe Dougherty as my partner.  The show was a modern dance performance called, What's Love Got To Do With It?  Joe had played Matthew in Dancing in the Storm, ironically.  When I signed on to the project I didn't know how intimate and physical it was going to be, but it evolved and we made it more realistic than it had ever been performed.  

Also, we were the first actors to ever memorize the script.  It was originally performed in the 60's at OU.  The playwright, Skip Largent (who I met last night at the performance) updated it throughout the years.  It is the single most difficult script I have ever memorized.  It reads as a poem, and the lines overlap as we finish each other sentences.  So the partners are completely dependent on each other.  If one of us got lost, the other did too.  It was a fantastic exercise in partnering and trust.  

I am sorry we only had two performances, because I think shows hit their stride after the second performance.  Last night felt great, and I am sad it is already over. 

My body cooperated with me for the first time I can remember.  It stayed healthy and strong, even under stress.  My partner caught a cold that I didn't catch, even though we were kissing all week.  I think I am actually starting to develop a trust with my body I have never owned before.   I became so used to expecting it to fail miserably when it came down to something I really wanted to do.  My illness has prevented me from performing, teaching, directing, and  even from attending weddings, reunions, and funerals.  It just might be that I am beginning expect success instead of body betrayal.  That, to me, is the most amazing part of all of this.  

This is only the beginning.  I see myself coming back to life, and I am beginning to let go of all of the struggles of the past, while remaining optimistic of the future.  Not just optimistic, excited and freaking pumped!

My new friend.

I want you to remember how I was a year ago this week.  I dressed as a doll for Halloween in my dialysis clinic to cheer myself up, then came home in a wheelchair and threw up the rest of the day.  I wrote my monologue about feeling abandoned, betrayed, angry, and sad.  I was at my absolute lowest.

There is a girl in that same place right now, except instead of having had kidney failure for 15 years, she just got it six months ago.  Instead of being 32, she is 22 and terrified.  Instead of having a husband with health insurance, she has a baby and no insurance.  This illness came out of nowhere for her.  And she can't afford Soliris to get better. 

Remember when I told you all that Soliris costs $500,000 a year for aHUS patients?  Well, that is the cost from Alexion, the company that makes it.  My explanations of benefits say $52,000 every dosage.  EVERY DOSAGE.  And we need it once every two weeks.  I will let you do the math.  It is horrendous, and we need it every day for the rest of my life in order to survive.  This girl doesn't have insurance, and Obamacare doesn't kick in until March.  That still gives her five months she has to wait to get her life-saving drug.  

Something is wrong with this picture.  I don't know if things are getting better with health care, but no one should have to be a billionaire to afford to survive.  Understand that people like her and I don't care about politics.  We don't have time!  We are just trying to survive.  It is the only important thing.  And we have to leave the bickering to those in charge and trust that they will make changes that will help.  That is the frustration of living with a chronic illness like this.  It isn't cancer.  It doesn't have a huge billion dollar industry to make sure we get all the meds we need.  It is a rare disease that will ultimately end up killing those of us who can't get treatment.  

I am one of the lucky ones, but there are many more like me out there that need help NOW.

New Project!

I have been so busy, I have forgotten to blog about this!

I am performing in a show this weekend.  It is called, "What's Love Got To Do With It?"  It is being produced and directed by Austin Hartel, the modern dance professor at OU.  He is also one of the original members of Pilobolus, which I studied in my thesis.  It inspired so much of what I do now.  I am so excited about doing this show.  

My scene is slightly sexual in nature.  I have to kiss and have simulated sex on stage, which isn't scary to me of course.  However, choreographing and performing are two different things.  I feel really good about it though.  My partner, Joe, is fantastic to work with, and we have had a lot of fun with the script.  It is the first time I have performed since 2009.  It just feels so good to be on stage again.  Hopefully it will lead to more roles.

After this show, I am working on the remount of Dancing in the Storm.  I need to write a few more scenes, which I am thrilled about.  I think I will try to add the first transplant this time.  And maybe some more oompf to the transplant.  Who knows?  I am just excited to do it again.

Also, I have a bunch of photo shoots coming up.  One of them is for the University of Iowa.  They want to use the story linked above and need some more pictures of me and some with Matthew.  I am so excited about it.  I am also doing a Christmas pin-up shoot as well.  eeeeeeeee!

It is funny how many doors have opened since the show closed.  I launched my new website, www.toniasina.com and already I am scheduling workshops and shows for spring and 2014.  It's funny.  Nothing motivates me more than people trying to hold me back.  I am sure everyone is like that, but for me it launches me so much farther then I ever expect.  I just feel so excited for the future opportunities coming up.

On a sadder note, there was a girl at the aHUS dinner and talkback last week that has similar health problems as I did.  She hasn't been confirmed aHUS yet, but it looks very close.  I saw in her eyes the frustration and sadness I felt once, and my heart goes out to her.  I know what rock bottom feels like, and she doesn't even have the energy to be mad any more.  She has a wonderful family support system though, and I know they will get her through this.  Hopefully she checks out this blog (which of course I gave her) and gets some ideas from it.  After all, that's mostly why it is here!


So many doors opening!

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! 

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. 

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.

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.

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.

Tech week

The show is getting freakishly close to going up and things are stressful, of course.

I called Erin, my co-writer and we chatted about the issues that need to be fixed before we open, and she helped me to a conclusion:

Everything really is OK. 

I had a few reasons for doing this show.  The first was to tell a story.  The second was to teach some students about movement and devising theatre.  The third was to feed my soul.  I feel like all of those things are being done, and that is all I can ask. 

So I don't know why I was walking around with a pit in my stomach all day.  The ensemble is strong, smart, and capable.  And they are doing a mountain of work in this show.  I have asked them for a lot, and they always deliver.

It's a little sad to think that after the show is over I won't have any reason to be at school for a while, but I have some other things planned for the rest of the school year.  Teaching Intimacy is becoming something that may take me out of Oklahoma from time to time, and that is the best thing for me for now. 

I feel like I have second wind this week, and I have to give credit to the cast for that.  Also, my Assistant Director, Aly has been a savior for me.  She has done so much grunt work, it's astounding.  Everything is more than OK.  Everything is great.

It's time to take my own advice and dance in this storm.   

Great article!

I posted this link on my facebook page, but I think it is so important.  I wish everyone could read this.

This article is very well put. It also promotes being understanding of ANY and ALL ways that said ill person chooses to cope with their illness whether it is turning to their faith for strength, rebelling from the lifestyle of a sick person, or merely choosing to live their life to the fullest in whatever way they choose to do so. The last thing they need is judgement. I would even go further to say this pertains to everyone, not just ill people. Anyone going through something difficult deserves the same kind of understanding.  But come on, especially ill people!

click here for article

Show update!

Well, We have choreographed all but the finale and I am really excited about that.

The show is coming along really well.  The ensemble has been awesome to work with.  They give input, and that helps a lot.  It feels strange to write a story about your life,  but luckily they have given me enough ideas that it doesn't feel exactly the same.  It's less narcissistic.  That was my one fear.

The next step is fine tuning, coaching the acting, and getting all the props together.  Finding a bed has been the most difficult thing.  But I know it will all work out.

On the other side of things, we switched a medication to make my hair stop falling out.  It has been coming out in clumps for the last two months now and doesn't seem to want to slow down.  Hopefully this new medication will help with that.

Numbers are still great, though.  We hit our six month mark this week!  One milestone down!  Matthew is completely back to normal.  Also, my birthday is coming up!  I love birthdays!  I always feel lucky to have reached each one.  

I know I haven't posted pictures in a long time, but I am pacing myself this time.  As soon as I can get my hair figured out I will get right back to it.  Maybe I can get Matthew to join me in them this time.  :)

Yes, I will continue to take pictures.  As long as it feeds my soul.