Ugh, steroids.

It has been a long time, Folks.  Sorry for that.  Remember the old post I made a while back about side effects?  Well I am glad to report that my side effects are not what they used to be, but I guess I was really enjoying one of the side effects that I no longer experience and miss dearly. 

My lack of appetite.

I have spent the last three years losing weight so fast that it was alarming people around me.  And I am not going to lie, as a naturally slightly overweight woman I loved being skinny.  Maybe I loved it too much.  I bottomed out at 110 pounds at my sickest.  I didn't try to lose most of the weight.  I truly wasn't hungry and experienced so much nausea that eating wasn't ever a good idea. 

Now I am on Prednisone, and I feel like a monster has been unleashed.  Prednisone and I go way back.  I have been off and on high dosages of it for the past 15 years.  I hate and love it.  And right now I loathe it.  I have gained 15 pounds in six weeks.  That comes out to over two pounds a week.  At first, I was just happy to be hungry again and happily ate whenever and whatever I wanted.  But now I have this horrible sense of anxiety attached to eating, which is also a side effect of prednisone: mania. 

My clothes don't really fit anymore and I get stressed whenever I want to go out that I don't have things to wear because I got rid of my "fat" clothes.  Now I need my "fat" clothes.  And so my mind tells me that I must be fat.  I know I am still in a healthy BMI for my height, but man I just loved being small.  I emotionally thrived at that size. 

Yes, I am happy to be healthy.  I don't want anyone to think I would rather trade dialysis and skinny jeans for perfect creatinine and clothes that don't fit.  I am truly grateful.  But my hate for prednisone burns with the fiery hot burning passion of a thousand suns right now.  And I think it might be driving me a little crazy. 

And I am only on 10 milligrams!!  Jeez!  It's such a low dose!  I can't believe it is affecting me this much! 

I had more boudoir pictures taken of me last week to remind me of my outer beauty, like I did pre-transplant.  I hope they help me gain some confidence.  I just don't recognize this body.

No.  That's not it.  I do recognize this body.  It's the one I was glad to get rid of two years ago. 

Now this blog has been mostly about surviving the bad and putting things into perspective.  I am trying really hard to do that now.  I didn't even want to post this blog because it feels so out of character for me to complain about something so trivial as weight gain.  But I feel I need to continue to document this process truthfully in the case that someone might learn from my experiences in the future.

So I feel great, and I hate gaining weight.  That is the update for now. 

So Antsy!

Matthew and I are hitting our sixth week post transplant next week.  I have a couple of realizations: I am doing great now, and all the time I spent worrying and fighting and seeing doctors and calling insurance companies is now....completely free.  I am thrilled, but at the same time I feel as if I am wasting my time doing nothing.  I can't shake the feeling that I should be doing something with my time. 

I want to teach!  I want to do theatre!  I want to dance!  I want to go out!  I want to be upside down on a trapeze!

And I have this secret fear that I might be too old to learn how to do these things with the passion that I want to pursue them.  I guess I just...want everything.  And I want it NOW!

On our own!

My mom left to go back home yesterday and Matthew and I are on our own now.  Yesterday he went to work from noon until 6pm and we wasn't totally wasted by the end of the day!  I drove him down and picked him up too.  So the only thing that is difficult is carrying heavy things, but we are getting creative about that.  Garbage can be put into 5 pound bags and carried down more often.  Laundry is tricky but we are managing.  Sabrina is the heaviest thing we have to lift and I have a creative way of getting her in the car now (she hates getting into cars).

So things are slowly getting back to a routine.  I wore heels yesterday, my belly has lost some of the swell already, I am able to walk Sabrina fairly long distances, and I am fitting into my largest jeans comfortably.  I have lost about four pounds since transplant but I don't think I will go back to the 115 I was before.  I am just so darned hungry all the time.  I know the steroids are influencing me but it feels as if I haven't eaten in years, and I have no ability to stop eating things I never craved before, like chocolate!  I hate eating chocolate!  I have never craved it ever.  I always thought it wasn't worth the calories and now it's like an addiction.  I think Matthew's kidney is making me crave sweet things.  I always favored salt before. 

Other than that, my numbers are still looking good.  My creatinine went up a little, but not to a dangerous level.  I think I just need to drink more water, and I have no problem with that.  My scars are completely healed and now all I have to do is get my blood drawn once a week and get my Soliris infusions every two weeks. 

I am also writing a play about all of this.  I hope to put it up in the next year or two.  I have a lot of it hashed out already, but it will be a pretty large project and I don't know if I can get a space to hold it at OU.  I am excited about it though, and I also found out I will be directing a show in the fall.  It will be in a small space, or even a found space, so I can't do the show I started writing.  A former student of mine, Erin Crossley (formerly Erin Stanley), is going to help me write a new piece for the fall.  She has a fantastic eye for movement and has written some of her own work as well.  It will just be so amazing to finally have some output of creative energy for the first time in a year. 

I find that I am impatient to get back to working out.  It hasn't even been four weeks and I want to go back to dance classes.  I am starting to do some mild abdominal exercises today.  I know that if I jump on this pole in my apartment I could tear something and recovery would be delayed.  But it is so tempting.  Like Matthew says, "Can't keep Baby off the pole."

Also, I am lining up my post transplant photo shoot.  Coming soon. :)