Prednisone Bistro, table for one please.

I am getting ready for my 9th night on high dosages of steroids. The past four nights since coming back from teaching in Louisiana have been like spending time with a different version of myself. A Tonia that I am very familiar with now, but haven't seen in a while. Tonia isn't Obsessive Compulsive. Tonia does have anxiety issues stemming from PTSD, but has learned to control them with medications and other forms of therapy. Tonia has a sense of humor that is founded so deeply in her soul throughout the years of struggle, it's almost difficult to make her NOT laugh. Tonia makes doctors laugh when they are trying to be serious. Tonia doesn't clean things. She would rather spend her time with a hobby or something or someone she loves, and she doesn't love cleaning. Tonia doesn't cry when she's sad, so she cries when she laughs because those tears have to come out sooner or later. 

I, Prednisone Tonia, let's call me Prednisonia, am very different.  Prednisonia is short tempered, antsy, flicky, sharp, emotional, manic, sometimes mean, paranoid, self-conscious, obsessive compulsive, and narcissistic.  She yells at doctors when she feels like they aren't moving fast enough, she lashes out when she gets defensive, she spends literally 12 hours a day cleaning compulsively, and she stays up all night hallucinating in a zombie-like haze because prednisone keeps her awake and ambien keeps her hypnotized. Last night I folded laundry until 5 in the morning watching TV and laughing with (even high fiving) invisible friends in my living room. Yes, Prednisonia is a scary distorted, countermask of Tonia. I teach a movement class about finding countermasks within the students' personalities. It's a scary thing to confront.  Tonia has come to recognize Prednisonia as part of herself. I'm even growing on her a little.

Prednisone and I have a long term love-hate, mostly hate relationship. I have been on and off high dosages of steroids six times.  Two of those times were for transplants. They wean you off pretty quickly for those, but they start you at mega doses at first. I have hallucinated spiders and bugs on my hospital bed and things like that on mega doses. But I compare steroid side effects during transplant to being pregnant.  You hate what it's doing to your body, but you have a beautiful baby when it's all over. Steroids without transplant is all negative side effects without the euphoria of knowing you have a newly functioning organ that is making you feel amazing. And since I have developed PTSD throughout the years, now panic can set in easily.

Long term high dosages of steroids deform my face and body.  I lose my curves and my face gets round (Moonface, they call it).  They make everything hurt.  My skin gets thin and acne appears, I start growing hair on my face, I stop menstruating eventually, and emotionally I become angry and frustrated at what is happening to my body. I know I have postings about steroids from years ago, but I am trying to document this from a different perspective this time.  I am going to really try to channel all the extra adrenaline into positive things, like advocacy, my career, and even this blog. 

Today, I got my blood drawn.  I am finding that the pinup is actually serving as a fantastic distraction and therapy for my anxiety. It makes me feel good about having to do medical stuff.  I did this hairstyle in the lobby in five minutes with three bobby pins, no curling iron, and no hairspray. I was pretty proud of it, and it cheered me up. 

 

I even got to see one of my phlebotomists I haven't seen in years.  I used to be one of his "usuals" before transferring to the Cancer Center. It was nice to see him. He told me he was afraid when I stopped coming a few years ago because I looked so sick he assumed I had passed away.  

Wow.

 

After the blood draw, which was slightly more complicated than usual, my friend, Mia, did my hair for me.  She did a great job. I love it! 

Later, I got the numbers back from my labs and my creatinine was 1.4.  That's a great number considering it had gotten all the way to 1.9 last week the day before my biopsy. My doctor says he isn't going to change my prednisone dosage (no amount of lip pouts and eye batting will change his mind on this.  Believe me, I tried.)  until I'm back down to my "normal" which is about 1.1. That means Prednisonia is going to rage on these steroids for another five nights before any side effects get better.

One thing: This little episode was the largest reason I didn't jump back into full time work right away. When things go wrong with me, it's never simple. And worst of all, people who have me in their life have to face that Healthy Tonia is temporary.  She exists in pockets of time, and when she surfaces, you better be ready with a party because she will be up all night begging to go skinny dipping in the ocean. For that reason she is half her age and twice her age at the same time.  So give Tonia a break when she gets back. She'll want to be a little crazy for a bit to make up for some lost time, but she means well. And after everything I'm going to put her through, she will be so happy to resurface for a great all night party on the town. 

Any town.

Seriously, get her out of here if you can. Oklahoma is crushing her like a dying star.

So, 2:35 AM, what should I do now...?  hm..maybe it's time to reorganize my underwear drawer...

I'm Free!! For now..

Alright, buckle up.  This one is strange...Go figure.

As you read before, I got a kidney biopsy on Apollo, Matthew's kidney, on Wednesday.  They were supposed to let me go the next morning, but the doctors never came to talk to me.  Finally, at 5 pm, right when Matthew walked in from work, the doctor (a doctor I have never been treated by-always a thrill) was explaining to me the results.  We were told that despite the fact that my immune system is suppressed appropriately, I was indeed rejecting Apollo.  It surprised all of us, because when you normally go into a rejection, you can see it in the blood numbers.  My numbers didn't show a rejection, but the biopsy did.  

The next step was for these doctors to call Iowa to get Matthew's specific tissue typing, which they did.  They were then going to mix our blood together (sort of) and see if I attacked his.  I did.

My doctor explained rejection like a row of dominos.  Each one hits the next one and cascades down to the last cell which is holding a gun to kill the cell dead. My body is letting the first one or two Dominos fall.  Soliris is supposed to stop the FIRST domino from falling.  That's what it does.  So why my body is starting the rejection process at all is the great mystery.  Matthew and I want to believe if I just increase my dosage of Soliris, it could help.  But we have to wait for the doctors in Iowa to chime in.  

It's scary to see your doctors baffled. It brought up all the memories from the first 13 years I was sick with aHUS without a diagnosis.  Something is happening that no one in Oklahoma can explain (...yes, again).  They discussed with me my new options:

1) go under the knife to put another chest tube in my neck (Remember good old Click and Clack)
2)undergo plasma exchange: hook up to a machine and clean the plasma out of my body while replacing it with donor plasma.  (It's an awful process, much like dialysis, but in my opinion is harder on the body)
3) wait and see if the number of antibodies in my system decreases and disappears, then go from there, not knowing if it would come back and happen again.

At the same time:

1) switch out my Prograf medication (which is an Immuno-Suppressant that happens to also be toxic to the kidney.  That's a laugh riot.)
2)try to start a new medication called Belatacept.  It's an infusion drug that I could get at the same time as Soliris, which would be actually really convenient

I want you all to know, and I am writing it here to make it real.  Plasma exchange is what I was going through in 2009 when I was teaching at OCU.  I had to wear a mask and gloves in public, I became extremely weak, and occasionally needed my wheelchair.

If this happens, my quality of life will severely decrease temporarily.  But I'll be ok once I stop the plasma exchange.  I want to brace everyone for what could be a little mini battle.  It won't be as long as the one in 2009, because my creatinine isn't that high.    We caught it early, thankfully.

BUT there could be new suggestions from Iowa that might not include any of these.  This was just the options laid out to me by my Doctors in Oklahoma.  I will know more when Iowa gives their suggestions.  But I'm left feeling like this again: Lucky and Rare.

 

Time to fill you in

So this morning I was admitted into the hospital for a kidney biopsy on Apollo, Matthew's kidney.

Since the transplant two years ago, things have been great with the numbers.  But recently, during routine checks, the numbers have been freaking out.  Six weeks ago, my creatnine went up to 1.6 (1.0 is ideal).  So we adapted some meds, and it went down to 1.2 again.  Then two weeks later, it was 1.7.  Not wanting to risk waiting around too long (this is my second transplant, after all), I asked my Dr. if he wanted to do a biopsy.  He said it wasn't a bad idea, and that we should draw labs one more time to make sure.

Yesterday I drew my labs, my creatnine jumped to 1.9, and my blood pressure was around 160/100 (really really high for me since transplant).  My doctor called and didn't give me the option of backing out of the biopsy.  He said he had tested my immuno levels to make sure it wasn't a mild rejection, which it isn't.  He checked to see if I had a virus, and I didn't.  So he is a little baffled.  Always a scary sign.  I am planning on contacting Iowa tomorrow just to keep them up to date.

As a side note, my great friend Chelsea brought me some essential oils to help with the kidney and blood pressure issues (lavender was my jam).  Let me note that nothing has been able to bring my blood pressure down, but this morning when we arrived and they tested it, it had gone down to 126/88. Pretty much the perfect level.  Those oils are really intriguing me.

So today we waited around a while before we did a biopsy, during which Matthew and I took a few pictures of course.
  :)

 Waiting to get checked in

 

Waiting for the Biopsy , Matthew was a nervous wreck today.  But can you blame him?  What a sweetheart.

  

 It was hard to get these zebra shoes on with those rubber hospital socks, trust me.

Now we are waiting for results.  I am staying overnight by myself because
Matthew has a long day at work tomorrow.   There's a beautiful spring storm and I consider that a great omen. After all, I have a zebra umbrella now!:)

I will update as soon as I know more tomorrow.

Thank you so much for your kind words and solid support, everyone.  I appreciate your reaching out
We never feel alone in this.

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. :)