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!
Hospital Me THEN (2012)
Dance like no one is watching!
Hospital me NOW (2015)
Dance like EVERYONE'S watching
Post Transplant-1 Year (March 2014)
Mi Amor Studio
Pre Dialysis Pinup Shoot (2012)
Dynamite Dames
Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)
Non-Pinup Me Now (2015)
This girl has four kidneys
Wednesday, June 12, 2013
Saturday, June 1, 2013
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.
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.
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.
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