Her Journey, My Struggle

May 19

Hey! 

So yesterday in physical therapy I managed to support my own weight while walking with a walker! It was exhausting but I did it! Ethan and I never got to work it out to where we could have our sessions at the same time but he told me that even if someone complained that he was there, he was going to wait outside to see me afterwards yesterday. 

I surprised him though when I walked out, actually walked out. He was really proud of me. I love that we are friends because he's so encouraging and sometimes that's all you need. I'm upset though because he's only 3 pounds away from restoring his weight because he can eat and is on the tube too and his nausea and all is being managed with medication and he can do his physical therapy outpatient so he's probably being discharged either Monday or Tuesday. I'm happy for him of course, but it's been so lonely around here.

He's been doing good with his knee. He can't put a ton of weight on it but he's trying to get cleared to drive which I think is crazy, but he really wants his license. He told me that he hopes all he'll have to use is a cane by the time he goes back to school in the fall after being on sick leave and using a tutor to pass his classes but right now he's doing good with his forearm crutches. 

It was funny though because we were talking about how they wouldn't let us have PT at the same time and I told him that he should've told him one of my organs just doesn't work, the other is missing part of it, and another isn't even my own, and that I ate through my freaking arm for weeks. He then started joking about how he has the liver of a 50 year old alcoholic and he couldn't even tell you what beer tasted like and that hell he was practically an old man. Most of you might think it's crazy but joking about all this but it helps to not take everything seriously. 

We face timed once and showed each other our rooms and he was acting like it was an episode of that old show on MTV called Cribs. He's honestly the funniest person I've ever met.

I had told him about the depression, and my attempt, and my eating disorder and I honestly was afraid to because it's hard for people to understand but Ethan was so caring. I mentioned before that after he quit sports he went through a depression and he told me that it got really bad. He had to go to therapy because he started saying that he was going to cut his f***ing leg off because it was almost as useless and he was. His parents at first thought it was just a cynical joke but they realized it wasn't. 

I myself have to gain about 7 pounds which will take some time but they don't want to release me because I'm such a "complicated" case. My seizures are non existent though which is really good. 

My parent's have been talking to my team about going back to school in the fall and it seems like it could happen. I have a lot more energy and mostly everything since they've put me on the seizure medication and new formula has been controlled and they even said if I had to go back to school still in the wheelchair it would be fine. They feel a lot better about it all since I would be going to the school where my dad works. 

If I do go back, they'll set up a 504 plan so I can have accommodations to help me get through school. My mom told me she'll make a definite decision by the time my dad starts band camp cause that week is when administrators come back and we can set up the 504 plan and get my schedule sorted out. 

I feel like a new normal is coming and it's the most normal I'll be in years. My estimated date of discharge is between the 25 and 28th of May.