No more donations

I am not sure if anyone noticed, but I recently removed the paypal donation button on the right of this page.  

Matthew and I want to thank everyone who donated to our medical expenses.  It was so helpful, we cannot express.  Your donations have helped us to travel to and from Iowa and Chicago, purchase medicines, pay our copays and deductibles, and generally feel very loved and supported throughout our whole ordeal.  We can't thank you enough.

From now on, if you feel you have extra money you want to donate to someone, find another sick friend and buy them dinner.  They appreciate it, even if they don't have much of an appetite.  Being sick feels very isolating, and the best think you can do as a friend to a sick person is make sure they know they aren't disappearing.  Thanks to all of you, I felt very visible.  That is going to be present in the play that I am writing. 

You have probably noticed that I don't mention religion or God much in this blog.  Some find it outlandish that I am not religious after all that I have been through.  But I truly believe in the power and love of people.  Humans.  I am a humanist.  Instead of thanking a God for giving me my life back, I thank the surgeons who went to school all their lives to be the best at what they do and for taking my case on.  I thank my husband who decided to risk a lot to give a part of himself to make me whole.  I thank all of you, atheists and deists alike, who have supported and loved us throughout this whole process and continue to offer support in any shape or form.  I believe it was up to people to make those choices, and I feel very connected to them.  

If I have to thank a God for the good times, that means I also have to be exasperated and angered about the years and years of bad stuff he sent my way.  I am not interested in that kind of negativity.  If he works through people, then great.  I see those people and I spend my energy thanking them directly.  There have been some great things that have come out of this illness, and to me it is the connections to people across the world that I cherish the most.

We all get through the tough times any way we can.  I don't judge anyone for loving and needing their religions.  Human interaction, chemistry, and love is my religion.  I base my career on it, and my life as well.  So thank you all for being here.

Couldn't resist.  I love this picture so much.  Taken by Craig Lawrence.  You can even see my handcuff necklace.

This was taken In the first week of January at the SAFD Winter Wonderland workshop.  Oh!  I have a post about that!  I will add it to that.

Just some recent pin ups

Recently I went to a Pin-Up Workshop with Bettina May at Teaze Dance.  We had a blast!  These are a few of the photos from the shoot we did at the end.  A couple of charmers in here:

 My New Professor Headshot:

My hair is falling out!

About three months after my last transplant, I started losing hair by the fistfuls.  I would be sitting in class at VCU and there would be long strands of hair all around me on the floor.  It was embarrassing.  It grew back of course.  I never went bald, just thinned.  It freaked me out though.

It is happening again.  Last time we determined it was a long term reaction to anesthesia.  I had forgotten it.  I have a sort of tight relationship with my hair, and I don't like seeing it fall out.  I'm not 25 anymore so I hope it can grow back again after this.  My body has been through a bit, so I have to expect things like this to happen.  I might even have to.......CUT IT.  *gasp*

There are also some pictures that I haven't posted yet and I am working on it.  They are on a CD and I got this new Windows laptop that doesn't have a CD drive.  So I have to figure out how to get the pictures on here.  I will get those though.  They are a pretty good benchmark of what I look like now.  I am on it. 

But on a brighter note..The University of Iowa published an article about me and this blog!  If you haven't read it, I added it to the links on the above right.  But it's here too:

http://www.uihealthcare.org/transplant/tonia-kidney/

I love it.  It's a great article and it captures a lot of personal things about me.  

Matthew and I are traveling back to Iowa in August to see the doctors again and do an in person interview on camera and see what happens.  Super exciting!

 

Writing the Show!

Matthew is out of town for three weeks and I am filling my days with aerial silks, pole dancing, writing an article about intimacy on the stage, and working on my play.  Also I am trying to get some of this damned prednisone weight to fall off of me.  I weigh 139 (I was 115 in the red satin sheet pics).  UGH.  And I eat about 1200 calories a day!  It's insanity!  But my butt is looking pretty awesome I must say.  The only problem is the huge bulge that is the FOUR KIDNEYS in my abdomen.  Stop, I know.  Yes I am happy to be healthy.  So happy.  An hourglass figure would make me even happier though, you know!  :-))))))))))))))))

Anyway...

So if I haven't mentioned, I will be directing a play in early October at the University of Oklahoma.  I have been writing bits of it for a little while, but a colleague of mine, Erin Crossley, is helping me streamline it now.  She is a former student of mine from Oklahoma City University and she always loved movement as much as I do.  I am happy to have the help too, because she has a great eye and knows my aesthetic better than anyone.

The play is about this.  It's about all of this.  It is going to portray a woman going through the struggles of disease and falling in love in the meantime.  Most of my work has no dialogue but I think this one will contain some monologues, possible voice overs that just might be taken from this very blog.  I love turning life into art, and using struggles to help others.  Even if it just moves them for a minute. 

I have to admit it is difficult writing a piece about myself.  It feels slightly narcissistic.  But I think it is a good story that needs to be told.  Erin is helping me keep it universal so it doesn't get too personal. It should not be something that only people who know me can understand.  But I am loving the process of discovering it.

I am hoping to include some aspects of boudoir in the show as well, of course.  Mainly because just like this blog, no one wants to hear about just medical stuff when you can see sexy things at the same time.  Ok, maybe that's how I feel.  

But there are great things in the mix coming up.  I am going to try to involve this blog more in the writing process.  So keep checking in, Sweet Friends!

Ups and Downs

Ups and downs.  Yesterday was definitely a down day.  My port didn't work at all and I didn't like the number on the scale.  This can only be fixed by more PIN UP PICTURES! 

Picture with Scar

I got my scar back.  It isn't even that big in these!

The honesty of Recovery

There are some things that don't go perfectly when you recover from a transplant, and I assume other illnesses.  Here is the difficult part that no one tells you: getting healthy is hard.  Going from sick sick sick to , "Oh! Everything is better, just enjoy now!" is not easy. 

For one thing, there is guilt here.  Guilt that I am not using my time wisely.  I took an organ out of someone and I am not doing anything that feels important with it. 

I don't recognize this healthy body. For one, my skin and hair are oily!  I think that is normal, like for normal people.  I was told that when you are healthy your skin releases more oil.  Well I got used to not having that and now I feel gross a lot.

It sounds petty. It is petty.  The steroids take their toll.  They make everything small seem like you can't handle it. 

The weight gain.  30 pounds is average.  I don't want to weigh 30 pounds heavier.  I'll just say it: I am Vain.  I loved my skinny sick body.  It felt small and frail and I could hide my sickness in it.  People could pick me up like a baby.   I can't believe that being sick was what got me so small.  I thought, along with my family I guess, that I had some control over it.  Alas, aHUS and kidney failure diet extreme style.

I get antsy.  I want to go to work.  I want to teach.  I want to do theatre.  But life has moved on without me here and I can't just step back in.  All the momentum I had with my career before has gone up in smoke.  Everyone has adapted to not having me around.  And I guess I adapted to it too.  I was never a hermit, but I sometimes find myself not wanting to see people.  I don't have anything to talk about.  I don't work, I don't do anything interesting.  All there is, is blood numbers.  Fascinating.

I started going back to my pole dance studio this week.  To do something, anything.  I am not getting on the pole yet, because I don't feel ready.  But I am trying to build up to that.    It will take time.

I don't mean to sound as if everything is hopeless because it isn't.  I always wanted to be honest on this blog, and I have to say, recovery is not easy.  We felt like celebrities for a while there, and now all that is gone and it is just us, being normal, every day.  It's awesome and horrible.  That's being honest.

Making a difference is all I ever wanted.  It felt like I was doing that when I was sick.  Now I feel...unimportant.  I guess you could call that normal.  Being normal is hard, but I am adjusting to it.  Maybe one day I will be able to trudge though this steroid trip and get to the fun part of recovery.

I try not to talk about any of this.  That is what this blog is for. 

Four year anniversary!

Matthew and I celebrated our 4 year anniversary this week, and I have to say I can't say where a whole year has gone.  It is difficult to believe we haven't had a whole year of health since we got married.  I know this one is going to be good though. 

We were able to go to a Hollywood Vintage fundraiser for the tornado victims.  It was probably our most drunken and crazy anniversary yet, but I'm not complaining! Here are some pics from that:

We have been taking it easy, and we are almost about to hit the three month mark since the transplant.  I am getting Soliris every other week and blood drawn twice a week with nothing to remark about it.  All seems stable for now.  But we enjoy each other, truly. 

I stopped going to pole for a few weeks to heal my incision site.  This week I started going back again.  So far so good.  I just want to trim up and get my flexibility back.   I miss being able to move.  Some day I will go try some aerials and see how it goes.

In July, Matthew is going to be away teaching at  a Society of American Fight Directors workshop out east.  I hope to go visit him there.  There is a possibility I might have a workshop of my own to go to in DC, but I am still getting confirmed.

We have managed to stay safe from the tornados around here.  It has been a crazy month though.  Many people were not so fortunate.  We are selling our house in Norman on the 10th and are heading down there today to make sure it is still standing. 

Also, Matthew and I am taking the donate button off this site now.  We are so amazingly grateful for all the help we have gotten, and it is time for you to use your good will towards others in need.  The victims in Moore and other places in Oklahoma could use generosity right about now. 

As always, thank you for checking in.  I have another post about the honesty of recovery coming up.

Post transplant photos!

Hello everyone!  Here is the update for our recovery:

Everything is going amazingly well with the kidney and the aHUS.  All of my numbers are solid, and I am getting around much more these days.  Matthew is doing great also and we are looking forward to summer at this point.  Even our social lives have come back, just in time for Thunder playoffs!

I did go back to three pole dancing classes, but my abs just weren't ready.  I got scared because hernias are a possibility if I overwork the incision site before it is completely healed.  So I had to pause pole for a bit.  But I will be back as soon as I can!  And after that: aerial silks!

So here are my boudoir pictures I had taken six weeks after the transplant.  As you can see I have gained some weight, but I think it's all good.  My curves have come back, and I can't say I mind about my butt having some cushion.  :)

The photographer photoshopped my transplant scar, so I am working on getting it back in the pictures.  It's important to me. But here you go:

 

 

So we keep moving forward!