I cried

Today, I cried. A lot. I know that tapering off prednisone can make a person very irritable and weepy, but I can't put it all down to my medicine.

I cried because I want so badly to go home, but there's no home I can go back to. I cried because this means I'm technically homeless. I cried because I'm going to wake up in the hospital tomorrow, and the next day, and the next, and we don't know when I'm finally going to wake up somewhere else. I cried because the whole process of setting me up in a new place with everything I need is maddeningly slow, and there are few outlets for frustration in the hospital. I cried because I've had to hold back my anger, my frustration, my sorrow for nearly half a year just so that I don't snap at nurses or loved ones. I cried because there are millions of other people in similarly shitty situations, and that breaks my heart.

I cried because I am constantly fighting a thousand small battles with my health and my situation, and there is no one here who can really understand what that's like. I don't need someone to cheer me up when I cry; I need someone who will just let me cry. I cry because there is so much outside of my control that I still have to try to fight against. My body is still at war with itself, and I have to fight the urge to blame myself when my CK levels rise. I have to remind myself that it's not my fault that I've gotten sick while in the hospital, that my body is doing the best it can with a compromised immune system to protect me. I have to tell myself that it's not my fault my body is like this, and that it's not broken. There is nothing "wrong" with me; I'm just ill, and might be ill for the rest of my life.

For those of you who can visit me, please don't worry about these feelings. They are just feelings, and all feelings come and go like the wind. Sometimes I'm sad, and sometimes I'm happy. Going through different emotions, even the ones we don't like, is just part of being human; I am a human going through a stressful situation, so it's only natural that I'm going to be frustrated and a bit depressed sometimes. Everything is going to be okay, and I have proof of that.

My CK rose to 1000 again last week, but it's back to 917 as of yesterday. I've also found out that I am going to be given a loaner power chair that I'll be able to take with me when I get discharged; we just have to wait for it to be repaired and delivered, then we pay a flat fee of $120 to borrow it. We've also begun looking for an apartment so that I won't be homeless for much longer, and it turns out that there are quite a few options for wheelchair users in this city. As my strength and abilities come back, even more options will open up. I don't expect to be able to handle stairs anytime soon, but being able to stand and take a few steps will make a world of difference. Until then, there are still skills I can learn and perfect, and I can expand my range of motion with simple stretches every day.

I have absolute faith that everything will fall into place, and that I am, despite my frustration, where I need to be in my life right now.