For Bianca

There is a girl in Australia.  Her name is Bianca and she has aHUS.  She, unlike me, does not have access to Soliris, or Ecluzimab.  If you have been following this blog, you have probably seen the older pictures of me in hospitals with tubes coming out of me, sitting on a machine.  That was how I lived before Soliris.

The sad truth is Bianca could die from aHUS.  It has caused her kidneys to fail already, which means she has to do dialysis every day for about four hours, and then plasma exchange (a very similar experience) for another four hours.  This was also my experience.  It was soul-sucking. 

So some of my students and I have decided to put up a fundraiser for her to raise awareness and money for her cause.  The admission for the show is completely free.  We are only asking that people pay what they can.  The show is being produced by Hartel Dance Group in Oklahoma City.   Here is the show poster.  If you want to see some really interesting dance and movement pieces done by local artists, stop by and have a glass of wine with us. 

Can't come to the show?  Don't live in Oklahoma?  Here is the part where anyone can help her, even from across the world.  I have put up my paypal button again at the right.  If you want to donate any money to her cause, every cent will go to her in a lump sum from For Bianca.  Please help this 17 year-old reach her 18th birthday.  aHUS people have a tendency to give back times 1000 once they get better, trust me.  This girl will be amazing. 

I have to get this post out first.

I watched a short video of Lizzie Velasquez, and that girl is really inspiring. 

Here is her link:

http://abcnews.go.com/Health/Wellness/texas-woman-gain-weight-bullied/story?id=17228529

Check it out if you haven't heard about her.  She has a disease that is unnamed and has disfigured her face.  She can't gain weight.

Now, I am feeling a little bullied.  I never really put it that way until I watched her video.    I have to admit though that "bullied" is the only word for this feeling.  I have a trigger response to bullying.  Not the typical Italian one either.  Although I wonder why that doesn't deter people from picking on me....they have no idea what my relatives in Toronto are like.  No, when I get bullied, I work my ass off and leap forward.  I think that stems from my disease.  aHUS is a bully too.

(No, I am not going to name any names here.  It wouldn't matter.  They would never take time to actually read my blog!)

I guess I am a little surprised still.  I know I have probably posted about this before, but my memory is come and go.  I thought after what I have been through, that people would give me some exceptions.  I mean, if I knew someone with a really rough disease, I would go out of my way to help them accomplish their goals if it was in my power to help.  But that isn't always the case.  Chronically ill people get a lot of attention, even if they don't want it that way.  That can be hard to understand by the possible healthy attention hoarders around them.  I think people with chronic illness become really strong people for several reasons. 

1)  There are good days and bad days.  You become addicted to the good days, and when a bad day comes around, if it has nothing to do with your illness, it isn't so bad.  If someone is mean to me now, it still hurts.  But at the end of the day, I'm not dying right now.  I actually have the strength and energy to be upset.  Frustration with betrayal can be a really positive emotion in comparison to suffering via disease.  The mind becomes more and more resilient to victimizing human behavior.  Maybe that is just me getting older, but I think aHUS has done that for me

2)  Our pain tolerance.  Do you know how much time we have spent alone in pain?  When you are in pain, all you can think is, "I just want this____ to end."  I am going to be honest, "this ___" can be exchanged with many words, "this pain," "this disease," "this day," and yes in extreme situations, "This life."

One time, I was having gall bladder pain that was so bad I couldn't talk or breathe without screaming.  Matthew had to drive me 35 minutes to the emergency room in my car.  I remember seeing the handle of the door and thinking if I jumped out at 75 mph, the pain might stop.  That was terrifying.  But when the pain left me, I was on an emotional high for three days.  The experience of NO PAIN is one people forget to appreciate. 

Once you have felt that kind of pain for years, it desensitizes you to some things.  I find that people can still hurt me with their actions for a moment.  People, even friends, can still surprise me with their betrayal.  But ultimately, it will only make me appreciate the people who don't betray me even more than I did before.  I have more love for friends than I have anger for spoiled healthy people who love to throw the first stone.  Yeah, I said it!  Spoiled!

My friends are people that still love, support, and even like me despite the things they don't fully understand about me (such as my love for classic strong and slightly manipulative femininity, and my need to watch serial killer documentaries).  Now that is a friend.

3) Other people's problems seem a little more "solvable".  I find that giving advice is really fun.  How great is it that people have problems that can be solved?  Imagine having only problems you couldn't solve.  It's hard.  That's why I love choreographing and coaching actors confidence.  All the problems are solvable!  How wonderful!  How easy!

This is why so many ill people become motivational speakers.  Because they are happy to help people solve their solvable problems.

4)We meet a lot of people.  Some we only meet once.  They save our lives, and they leave sometimes.  We learn to appreciate every encounter as if it might be the last time we see that stranger.  Every conversation could be the last, and do you want that person to remember you being negative or even boring?  Never!  Make them comfortable.  "Hi there.  If I die during this infusion, could you make sure my hair looks good?" 

I suppose that is why I love college acting students.  They hug and say, "I love you."  They laugh and share emotions all the time.  They appreciate theatre in the rawest form as something that fuels them still.  They haven't been poisoned by "the realities" of adulthood yet.  They don't have to deal with censorship, butts in seats, or even donors that don't want to see two people kissing (or even more!  Gasp!) on stage.  They don't see the ropes behind the scenes, and I am so glad they don't.  I wish I didn't have to see all of that.

So while it hurts that I feel bullied, it only reiterates the message in my brain, "Don't be where you aren't wanted."  So that is my 2014.  I will not waste a precious day of this brilliant year feeling awkward and obligated to put on a fake face and pretend I am comfortable around people who wish that I would just disappear to leave more room for their own success.  I just got bored typing that.

Maybe you noticed:  Disappearing is never something I will do.

Oh, and watch out for attractive Italians that say aboot and wear suits.  They as well can't be controlled. 

Queen for a Day

Yesterday, my mom and Matthew came with me to the transplant clinic at the University of Iowa to get a check up.  The marketing department, along with the transplant team, asked me if they could turn our visit into an interview for their website.  They already wrote a fantastic article about our transplant and this blog (link above), and this video interview will be attached to that.

The team was so awesome.  They picked us up and brought us around the hospital, following us with a video camera  and photographer to capture scenes of us with the doctors and staff.  Mostly, it was just really great to see the doctors after all this time.  Our transplant's ten monthiversary was the day of the interview, oddly.  So celebrating it with the team was really special.  

I received my first transplant in Richmond, Virginia at Henrico Doctor's Hospital.  They did a great job as well and had a wonderful team, but after I moved to Oklahoma I wasn't ever able to go back to thank them.  I am so glad I had the opportunity to do that this time.  It means even more now because the work that the specialists at U of I have done on aHUS saved my life when I was really desperate.  

I also respect that Dr. Reed had to do some convincing to allow this blog to be attached to their site.  I have pictures that some people consider....what is the word.....taboo?  Maybe I am a little desensitized, but I just don't see the big deal.  I can show you ten pictures way more offensive on billboards over the highway or pictures in magazines, even at the mall!  And my pictures have a meaning that isn't just, "Behold, this picture of sex!"  It's nice when people understand me.  I only wish that I had such an advocate in Oklahoma.  I sometimes get tired of justifying this blog, and when I started it I never thought I would have to do that.  It was just a journal with some pictures that boosted my spirit.  Dr. Reed, if you are reading this, thank you for understanding and fighting for me.  I will be directing all future complaints your way.  ;)

It is always good to be reminded of my first transplant with Mom.  They interviewed her yesterday separately from my interview so they could get her take on the situation.  We still talk about her kidney that I have inside, but I love reflecting on the details of how awesome and overwhelming  transplantation is.  The bond you have with the donor is one words cannot describe.  Both transplants are different memories for me, but I think the three of us share a unique bond.  When I think of all the difficult nights the three of us spent in hospitals together, it makes sense that I have part of them inside me.  The are the two people that love me the most in this world, and vice versa.  I was really happy to speak about both her and Matthew.

Most of all, Matthew and I are happy to advocate for others who don't or can't fight for themselves.  Our health care system is messed up, and the people who need to have their voices heard are the sick ones.  They are using all of their strength just trying to survive.  People like Matthew and me are the ones that have to do the talking, mostly because we can, and we understand.

Thank you everyone who we saw yesterday.  Greg, Lindsay, Kaitlyn, Jim, Susan, all the doctors, nurses, and coordinators, and anyone else I didn't get to see.  You all made us feel very welcome and special.

In other news, my article on Intimacy is being published in The Fight Master  as well as an ad for Intimacy for the Stage, I have booked Dancing in the Storm for October of this year in Chicago with Adapt Theatre Company, and the first remount of Dancing in the Storm starts rehearsals in OKC tomorrow.  I am also taking pole and burlesque classes, continuing modeling and pin up work, and starting to write my book on Intimacy.  These are all a fraction of the things I can do now that I couldn't do a year ago.  Things are going to be busy when I get home, and I wouldn't have it any other way.   

Frozen in Chicago

Matthew and I flew in just in the nick of time.  It started to snow a few hours before we landed, and it didn't stop snowing until about 24 hours later.  Elk Grove looks beautiful, and I have missed storms like this.

Next week, Mom, Matthew, and I are traveling to Iowa City to see my doctors and film out interview.  I can't wait, it's going to be a blast.  We are filming our interview in a theatre, for ambiance I suppose.  I am just happy to start advocating on a larger scale.  Maybe they can help me with that.

So this weekend: family and friends, next week: Iowa.  When I get home: Dancing in the Storm OKC style.  Another whirlwind performance, and I might not even have enough time to add those scenes I really wanted to add.  We'll see.

Snowstorm like crazy here so we saw Frozen.  I loved it.  I have always loved the ice queen.  Super fun.

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.