Why I Don't Work in Oklahoma

Ok, so the time has come for me to explain a few things about what has happened to me here in the place I have learned to call Home.  In my show, Dancing in the Storm, I never once mention the word, Oklahoma.  It feels wrong to slander it because there have been so many wonderful people I have encountered here.  My students have been some of the most important people in my life, as well as the actors in the shows I have directed. I have a lot of wonderful friends here that I have acquired throughout my years here.  But there have been some experiences I just can't seem to get past, and I have felt extremely out of place for the past 8 years.

Here is the truth:  I no longer am a professor.  I taught for three and a half years at Oklahoma City University and through something I like to call, "a difference in approaching relationships with students," I was not rehired after my three year contract was over.  This just happened to coincide with my aHUS attacking my body.  It was the hardest thing I have ever endured.

Let me repeat that.  I have had two kidney transplants and a potentially terminal disease for 15 years.  And losing my job was the most traumatic experience of my life.  Those students meant everything to me, and I am lucky enough to be in contact with many of them, some of which worked with me in the Chicago production of Dancing in the Storm.  The day I was told I wasn't returning, The University of Oklahoma School of Drama brought me on to teach full time classes for a teacher going on sabbatical.  I was told I was and always would be "part of the OU family."

There was even an article written about me in the OU Daily which I rave about how the OU School of Drama was some of the most supportive and honest group of colleagues I could ever have hoped to work with (the link to that is above right). I taught for three semesters before my illness began to take over and I needed to stop working altogether.

During this time, the faculty at OU was amazing.  They brought us meals and christmas trees.  They gave us ornaments and gift certificates for dinners we didn't have the energy to cook ourselves.  We truly felt like part of the family.  I was even told whenever I felt better, that I always had a place to teach at OU.  This gave me something to work towards.

When you compare the dates, this is when I began to take pictures of my body with tubes coming out of it.  I was hitting rock bottom, and I needed a boost.  Seeing my body disintegrate was terrifying and makes you question your own sanity at times. I began to lose my confidence and passion(the very thing I teach my students).  It scared me to death.  So I joined a group of women at a fitness and dance studio called, Teaze Dance and Fitness.  They taught me pole dancing, pinup, and other dance classes.  They helped remind me I am a woman and that I needed to embrace the me I love again.  So I took some pictures of myself.  You may have seen them:

This one was taken before I went on dialysis.  I couldn't actually stand in those heels.

This was taken a week before my kidney transplant.  That tube on my right chest is my dialysis tube.  It went straight into my heart, and I used it four times a week to attach to a machine to filter toxins out of my blood.  I did this with my husband at home after training for six weeks to become home hemodialysis certified.

The side of my hip facing the camera is my mom's kidney transplant location.  I wanted to display it because of the sentimentality.  This was at a point when there were several days a week I needed a wheelchair to go farther than about 100 feet, and stairs were absolutely out of the question.

 This picture was taken exactly five years ago, when I didn't have a diagnosis.  My life was doctors and not knowing if I would live to see 30

And this is me now, age 34. Enjoying life, enjoying my body as a healthy person (which has been naked dozens of times in front of a room full or surgeons, so what's the big deal if my shoulder is showing?)  I have a lot to be thankful for, and photo shoots are a way to thank my body and soul.

In all of these pictures, I am experiencing a terminal illness that could have killed me if I didn't get access to a drug called Soliris, and a second kidney transplant.

Here is where the story gets strange:  I was dying.  The only thing on my mind was survival. I love these pictures. They helped me survive, and they gave me confidence.  This was my coping mechanism. And, well, I did just that.  I survived.  But after becoming "Healthy" years later, I came to learn that others saw these pictures as an indication of the damage I can cause to others with my...audacity.

My husband, Matthew gave me a kidney in 2013 and I had access to Soliris, so things began to get better immediately.  The week after my transplant I received a call from the OU school of Drama and was asked if I could direct a movement show in the following fall.  I was elated to get that call!  It was all I wanted: to direct a show again and get back to work.  I spent the following summer writing and planning the show I devised that we all have learned to be called, Dancing in the Storm.

On my first day of work that year, I watched auditions of students and nearly cried I was so happy to be back at work.  I had taken nearly two years off of work being a prisoner of my illness, and coming back to work was one of the best days for me in longer than I could remember.  Between audition times, I had a question for my director and went to find him in his office.  I wanted to tell him that I felt confident that I was ready to work more, and that I thought I could handle another class, or two even.  "I just wanted to let you know that I am back, and I am ready to be part of the team!"

At that point, it was revealed to me that I couldn't teach classes at OU anymore.  I was told that while I was sick, I took some inappropriate pictures that portray me as a poor role model for the students.  In the same conversation, my sexual life came into play.  There were also rumors that followed me from Oklahoma City University (five years in the past) that I had a sexual relationship with a student (which was absolutely untrue) and it was too chancy to let me get too close to the students any more.  I was told I might be able to direct, but teaching a class would be impossible until I worked really hard to change my image.  The pictures above were part of the image I was to change.

This blog was brought into question.  In another conversation there was a suggestion to take it down. This colleague suggested that maybe this blog further validated the rumors about my inappropriate relationships with students, which baffled me. There was a suggestion to use my transplant as a jumping off point into "adulthood."  Let it be known that I was a 33-year old woman at the time.  I wasn't a graduate student, or an undergraduate student.  I wasn't a little girl.  I was a professional woman with a terminal degree and 20 years of theatrical experience and medical struggles that influence everything about how I teach.  When we discussed that the rumor of my inappropriate relationship was not true and that there was absolutely no evidence to prove it, I was told it didn't matter.  The rumor would stay with me forever and follow me, and the school simply could not take that chance.

Let me take a side note to mention that no letters of sexual harassment have ever been written about me. There is nothing in my record about this incident.  I was being pegged as a danger to my own students, the most important people in the world to me, and I couldn't even tell those students this was why I would not be returning to teach them.  Well, I could have told them, but I actually thought that would be inappropriate. They don't need to know the nasty behind-the-scenes crud that doesn't really affect them.

This was a big part of the plot in Dancing in the Storm.


So this is my personal blog.  And I get to write my truths on it.  Here are my truths.
~I am in love with what I do.
~I love my students and would never put them in jeopardy.
~The blog I have written has nothing to do with my sex life.
~My sex life is nobody's business but my own.
~My sex life is not nearly as interesting as these rumors lead it to sound.
~This blog has brought me more opportunities than I could have possibly imagined.
~This blog saved my life.
~The pictures I have posted are benchmarks so I can look back on my sickest moments.
~The pictures were a survival tactic when I hit rock bottom.
~I am still here, despite the fact that a majority of aHUS patients die within the first year of diagnosis if they aren't treated with Soliris.  It is indeed a terminal illness.  I wasn't treated with Soliris for 14 years.  I'm still here, and I'm not going away without a fight.  Even the doctors aren't sure how I am still here.
~This experience has really made me question my trust in the people around me, something new for me.  I am so trusting, even after being bitten several rimes.  I like to believe that people are good, and there are bigger and better things in store for me ( and Matthew of course.)

So, these are the truths I need others to know: 

~I AM extremely grateful for the help we were given while I was sick, and for those colleagues that continue to support me in their own ways. 
~I don't and never will have children of my own.  My students mean more to me than a salary, pride, ego, or any of the other petty reasons that would have made me back down from academia years ago.  I skyped my classes from a hospital for god's sake.  I need my OCU students to know I didn't leave because I wanted to leave them.  I need my OU students to know that I would be there teaching with them if it were up to me.  I even tried to stay present, but was clearly made to feel as if I didn't belong, so I just took the hint.

But it isn't up to me.

Again, I thank those friends who have remained supportive after I got my bearings and came back from the dead.  I have some amazing former colleagues at OU.  But my trust has been severely shaken, and I am ready to move on. And I am ready for my husband to stop taking all the pain from this experience on himself.  It's understandable, since he saved my life so I could do great things.  I don't plan on letting him down of all people.

And for these reasons, double standards as they might be, slightly sexist, intrusive, and beyond my control, I am coming out of the closet about all of this. I was never a good liar, and I think there are lessons to be learned about my experiences.  This is why I no longer teach in academia in Oklahoma, but that is not the only option for me in this life. This blog is not coming down, I won't change my image (heels and all), and be careful who you disrespect in the arts.  The feeling of being wronged is a great fuel for creating art. You might just find yourself portrayed in a play one day.

My Commercial for Kaisers!

About a month ago I joined my pinup club, Oklahoma Pinup Girls, for a commercial shoot at Kaiser's Diner.  We were asked to be extras in the background dressed as vintage girls. 

When we got there, they asked if one of us would be a waitress for one of the shots.  I volunteered, of course, mostly because I was excited to have a character.

 At the end of the day, we were asked if we were available for another day of shooting on the following Saturday morning.  They needed a few more shots, and I believe they wanted to do them in daylight. Doing pinup in the morning is really hard for me.  It takes a lot of time to get your hair just right and put all the makeup on, so you have to get up really early for an already early call time. So I showed up like this:

And did the rest of my makeup in the bathroom so I could look like this:

I confess, it's not my best work.  But it was 9 AM on a Saturday morning, and I had gone out the night before, so it was the best I could do in the situation.  Ironically, when I got there, the director approached me and told me he was glad I came back and asked me if I could do some extra work on camera.  He said they liked my energy and wanted me to be "the face of Kaisers."  Despite what I consider my less-than-perfect makeup and morning-after hair, I naturally said "of course!" and signed a new contract.  

I memorized the lines they gave me and for about two hours, they filmed me saying them over and over at different locations in the diner.  It was really fun, and my first commercial with lines. 

A week later, they called me in to do some voice-over work for a third commercial.  So I am now the Voice and the Face of Kaiser's Diner.  It was a great opportunity, and I am really grateful for Lynn Crowe, Angela Mullins, Teaze Dance and Fitness, and the Oklahoma Pinup Girls for providing the chance.  If you want to see it, click on this link:  Kaiser's Diner Commercial

Another tech week

Here we are in the most stressful part of the rehearsal process: The first Monday of tech week. 

I am so excited about this production.  There are so many awesome things going for us here.  The set is really unique and compliments the story so well.  At times I feel like I am actually in a webpage.  We had a snafu with an exit that has challenged the production more than maybe I would like, but I know it will come together before we open.

This ensemble is really entertaining to watch.  They all have such different personalities, and my favorite moments are the ones in which I see them actually having fun with each other within the choreography.  I love what they have added to my story.

Today I met with Alice, a PR representative for the hospital where I get my infusions.  She was so wonderful.  She asked if I could do an interview with her in exchange for the medical props she was giving me.  Are you kidding?  Of course!!  It's times like that when I really take stock of all of the opportunities that have come out of having my disease, and that still continue to present themselves to me.  The fact that I am in Chicago working with amazing artists on an original piece came out of aHUS.  I have met so many new people and made friends out of them due to aHUS.  I have reconnected with tons of people from my past because of aHUS.  I get to apologize for hurting people and rekindle old friendships.   

What an amazing consolation prize for being sick.  I am so lucky.  I can't imagine how my life would have been without aHUS.  How ordinary would I feel?  How unappreciative of my life would I be?  I'm so glad I have been given this chance to really live the kind of life I always wanted.  Maybe I am feeling a little sentimental, but I'm so happy to be alive.  I will try my hardest never to squander any opportunity I get.

I feel lucky.
I feel humbled.
I feel love.
I feel Chicago.
I feel life.
I feel grateful.  I feel grateful.  Grateful grateful grateful grateful grateful....

New Pinups! A year and a half out of transplant

Photos by Adele Wolf Photography

I love it here

So I have been in Chicago for about a month now.  I have learned a lot of things about being here in that time.  But one of my favorite things about this place is that I finally, finally am not worried about the things I say or do being misinterpreted in any way.  I can make jokes with people in rehearsal, I wear what I want, I can be myself everywhere I go, and I can enjoy myself without the the threat of losing career opportunities.  People really don't seem to care as much about any of that here.  I knew I felt oppressed in Oklahoma, but I had no idea the extent of that feeling until I came here.

Maybe it's just that it's a bigger city and people don't have time to care about those things.  Maybe it's just that I'm nowhere near academia. Maybe the more liberal atmosphere has something to do with it, but I'm totally into it.  I mean, didn't we all get into theatre for the community?  What is it if you don't have communal support?  It's...not really fun or even worth it.  I guess I didn't realize how bad things had gotten. 

So I feel liberated here.  I feel accepted.  I feel beautiful.  I feel appreciated!  I feel appreciated!!  Appreciated appreciated appreciated!! I can't remember the last time I said that! 

Thank you Universe!  More please!

Two weeks down!

The ensemble pieces are choreographed!  I only have two numbers with She and He to block and we will be able to go back and start fine tuning.

The cast is really fun and extremely talented, and I am so happy to get to work with them.  This version of the show is very different than the last one, and I am really excited about that.  I wasn't sure how different it would be, but once we started and the cast began to feel comfortable contributing it started taking off.

Matthew is coming to visit next weekend for my birthday and I can't wait to see him!  I miss him so much.

Dancing in the Chicago Storm!!

Holy cow, here I am in Chicago getting ready to finish casting and start rehearsals next week.

I don't think I mentioned it here yet, but I am remounting Dancing in the Storm in Chicago in October!  It's going up at Redtwist Theater and being produced by Adapt Theatre Productions.  It will have a six week run, and will be eligible for the Chicago Jeff awards.

I am so excited to be in Chicago!  I live minutes away from so many people I know, so every day is like a mini reunion.  I was raised in the suburbs so I never had the opportunity to be an adult in Chicago before.  I love it.

I haven't written in a while, but it's going to pick up again because of the show.  I like the idea of writing a show based on a blog that is about writing a show about a blog.  Mind trip, huh?

So, you want a health update I suppose?  Well nothing much to report.  Everything is going well at the moment.  My memory has come back ever since we switched my Courtney Love Cocktail of pills to help me sleep, and my numbers still look good.  I'm still slowly gaining weight no matter what I eat, and that stinks, but I am hoping this show will help with that, as well as being in Chicago walking everywhere.    BORING HEALTH UPDATE!

So keep checking back, I promise I will post some things for you. Until then, I will be hanging out in the Windy City!

Here's my latest Pinup Pic for you. :)

WE DID IT!!

Watch this video of Bianca and Tammy!  Thank you to everyone who helped make this happen!!

Bianca's Battle

Get ready for work!

This last Easter weekend, I spent a great time at The Louisiana Boil, a Stage Combat workshop with the SAFD.   We weren't able to attend last year because we were recovering from our transplant, so it was so nice to see our SAFD family again.  The final party was crazy and fuzzy, but amazing.

I was able to teach my workshops, Kiss or Kill and Instant Chemistry, and they went over well.  I learned a lot about how to teach intimacy at a stage combat workshop.  It isn't the same as at regular acting workshops.  But I had a great time getting the opportunity to learn more about what I do.   Some opportunities are coming in just from my article being published as well as the workshop, so good things are coming that will take me out of this Wicked Little Town.

I have also been choreographing Intimacy for Henry V at Reduxion Theatre in Oklahoma City.  It's a very racy scene that I haven't had the chance to do much in this area.  Most theatre companies in the area have to play to their audiences and don't usually push the envelope with Intimacy, but this director , also a friend, loves to move this city forward in the area of the arts. I am happy to be a part of that.   

We are starting rehearsals for Steel Magnolias at Piedmont Ensemble Theatre next week!  So excited for that one.  We are going to put up a full length show in ten rehearsals, so that might be difficult.  But I am ready for the challenge!

I have started a movement class that I am teaching in the city for the next six weeks.  The OU students have been begging for the opportunity to take more movement now that I no longer am attached to OU School of Drama, and I am happy to oblige. 

This next six weeks will be a little crazy, and I am not sure what the rest of the summer holds as far as long term possibilities (more on that later), but I have been happy to have the opportunities that have come my way.

Happy Easter!! Here's Some Pinups!!

All photos by Victor Harris.

Spring Break 2014!

This week has been AMAZING! 

In seven days I have had a lot of projects come up.  Last Sunday, my pinup group, Pinup Everywhere, dressed up in green for St. Patty's Day. 

Then, on Tuesday I filmed a commercial for my Chemo/Infusion center.  It was a stroke of luck.  I was coming out of my infusion, when I overheard a conversation at the front desk.  There was a woman, named Claire, asking questions about filming.  I said, "Filming what?"  And the two girls at the desk said, "Hey!  You need to film her!  She has been here for years, and she's an actress!"  The rest is history.

I was filmed sitting in a chair with a fake IV attached to my forearm.  Two nurses came to check my IV, and I just smiled and talked to them as if I was enjoying the experience.  Then a doctor came to sit with me.  She wasn't my doctor, but that didn't matter.  It a fun experience.

Then, on Thursday I was asked to do a photoshoot with Mi Amor Studio.  I have done pictures with them in the past.  She wanted to do some promotion shots for some new ideas she has.  So we did a bunch of shots.  The first were really contemporary headshots:

 Yes, this is possibly the best picture taken of me ever.  Ever.

And then we did an "Old Hollywood" theme:

Which was really fun as well.

Also, a shoot I did with Pinups by Liz have been released to post on the internet.  You aren't supposed to post pictures if they are getting published.  My pictures were in the March issue of Delicious Dolls Magazine.  Here is the shoot I did:

Then, last night I did an Easter themed shoot.  I dressed as a bunny.  I don't have those pictures yet, but I will put them up closer to Easter.

Health update:  I am feeling fine, health wise.  My numbers continue to be good, and I am reassessing some of my medications.  We decreased my prednisone from 5mg to 2.5mg.  I am happy about it.  I have gained a little bit more weight and I am not cool with that.  I refuse to get any heavier if I can help it.  I have a few plans in store to assist me, and my aHUS friends (the aHUSsies) are trying to lost some weight as well.  We are determined to take the chance at new life we have been given to be the ideal forms of ourselves in our minds.  We deserve to feel fantastic about ourselves after everything we have been through.

But overall, a great week!  Happy Spring Break, Everyone!
    

I am expensive

Yeah, this is an Explanation of Benefits for me.  It is the first of the year.  So as you can see I have my entire deductible due at once.  The reason for that is that Soliris is $51,691.00 a dose.  A DOSE. 

Recently I watched a video online about how Obamacare has ruined everything and that premiums are going up for some people and so are their deductibles.  I am sorry to hear that, really.  But these people were complaining that they had to go from $500 deductibles to $1000, or even $1,200 deductibles.  Um..wow.  Wanna trade?  

Some of these people were healthy, and some had their own issues.  But none of them were sick enough not to be able to work full time jobs, so I don't consider them chronically ill with debilitating illnesses.  Sorry for the assumption.  I did work full time from 2006 to 2011 with aHUS and honestly looking back have no idea how I did that.  Oh I remember, by being hospitalized every break I got and Skyping classes from my hospital room.

Every statistic, including the famous Forbes Magazine article, says that Soliris costs $500,000 a year roughly.  Now, by my calculations, that would indeed make each dosage between $15,000 and $20,000 give or take.  SO WHY DOES MY EXPLANATION OF BENEFITS SAY IT COSTS $51,691.00???  Because by my calculations, that would end up being around $1,343,966.00 a year.  Every year.  For the rest of my life.  I am 33.  I hope to be at least 53, but let's be generous and say I live to be 73.  If I need nothing but Soliris for the rest of my life and don't have any surgeries or other treatments ever, it would still cost Blue Cross $94,077,620.00 just to keep me alive.

So.....I think it is a fair assumption that Blue Cross hates me and wants me to die. 

Now.  Alexion, the pharmaceutical company that makes Soliris, is making $1,343,966.00 a year to keep me alive.  They don't want a cure at all, they are having a great time with my aHUS diagnosis.  They only wish I had been diagnosed in 1999 instead of 2011!  So, that means that the 300 or so aHUS patients in America using Soliris to survive are making them about $403,189,800.00 a year.  Just in America.  And THAT doesn't account for the PNH patients that need Soliris for their disorders.  I won't even count them.

So...I think it is a fair assumption that Alexion loves me and wants me to live without a cure for a long time.

Don't get me wrong.  Alexion has been very kind to me.  They have offered counseling, they check up on me every two weeks, and they are very helpful when I have questions.  It is clear they pay their customer service representatives a lot of money to work there.  One has even haggled with my insurance company while I was on the phone in a three way call.  She was ruthless.  And if she was going to lose her company even ONE dosage of the precious drug, it would be half a year's salary for her I am sure.  I am not judging Alexion.  I couldn't be more glad they exist and that this drug is available to me, and that they have made it clear to insurance companies it is a medical necessity. 

I hate to add politics, but my own family member said to me that people are demanding benefits without working to get them.  Now, when these political people (I don't want to generalize by saying republicans, because I am not making a political statement.) say that nothing is free and you have to earn what you make, I agree with that partially.  But I can't work full time.  I just can't.  We have a one income household now, since this diagnosis.  I almost died from working so hard all those years.  And I "earned" a $94,077,620.00 disease to show for it.  I am dependent on my husband.  If I didn't have him, I would be dependent on Medicare alone, and in three years I won't be able to even have that.  I would have no choice but to be on government programs including food stamps, welfare, medicaid, or handouts.  Anything that would keep me alive.  I didn't earn aHUS, and I didn't ask for it.  I would LOVE to be completely healthy and independent.  I would love to just have an annual pelvic exam and an occasional z-pac when I got sick.  I would love to not have doctor's numbers on speed dial.  But I don't have that luxury.

So before we start blaming people for wanting the basics in life, like being able to afford medicine, food, and shelter, let's look at the reality of the situation.  Someone is making a lot of money out there on people like me.  And it's not me.  And if you are reading this, chances are it might not be you either.

If you are reading this and you are one of the people profiting from my disease, could you lend me $3000?  I have a deductable to pay.

Kidneyversary Week!

Can you believe it has been a whole year??  It's so amazing how this year has flown by!

Matthew and I are so happy to have made it a whole year!

A year ago I was in a wheelchair.

 Thank you for the Kidney, Matthew Ellis!

It's here!!!

The video is finally here!!  Check it out!  I think they did a beautiful job!

Thank you to the University of Iowa Hospital for telling our story and making us feel so special.

Affairs of the Kidney

The Front Cover!!

Prepare yourselves!  This is releasing very soon!

How lucky am I?

This weekend I was a guest judge for a pole competition, burlesque show, and pinup pageant at the Oklahoma Pole and Burlesque Expo.  I just have to express how happy I am to be able to do the things I do now.  So many opportunities coming this way.

A year ago I spent my days like this:

I am a very lucky woman.

On Monday I am doing a Dark Sorceress photo shoot with a local photography company.  I am super excited about that one.  I haven't done a fantasy shoot yet.

And in a week, I will be doing my one year kidneyversary shoot with Mi Amor Studio.  It is also the one year anniversary of my first Boudoir shoot.  I had tubes coming out of my chest, and weighed about 30 pounds less than I do now.  Those tubes are totally going to be my props for this shoot.

And in April, I will officially be teaching Intimacy for the Stage at the Lousiana Tech Stage Combat workshop, The Boil.  This is really exciting as I have never taught at a stage combat venue before!

Meanwhile, in Australia, Bianca's blood pressure was totally normal. This is huge, considering aHUS makes you walk around with blood pressure like 170/125.  That used to be my norm.  Soliris starts helping right away.  But Bianca's Mom ,Tammy, has spent over $80,000 so far, mostly from donations to keep Bianca alive. It's a huge injustice. My heart aches for them, and I wish there were more I could do to help.

Bianca's Plea

Bianca has now received two dosages of Soliris due to donations alone!!  

In March, the committee that can approve Soliris to be made available to aHUS patients will meet and decide her fate.  This is the video she made for them:

Bianca's Plea

Milkshakes and Pinups!!

Had a pinup photoshoot with some local ladies from my pinup club.  It was super fun!  We went to Steak N' Shake with  a photographer.  So as if it wasn't past time: My Pinup performer name is Sina Star.  Here you go!