I haven’t updated in a while because things have been a bit up in the air. My college isn’t going to grant any extensions for my thesis, and that has left me anxiously trying to scramble to get things done. The worst part is that I know I won’t have it together in time, but I keep trying my best to sort it all out. My brain has been fried. I try as hard as I can to make sense of things I used to know, but the concepts seem to elude me.
GI wise things have been a disaster. I can eat, sometimes, but other times I can’t even tolerate food in my mouth before the urge to vomit overtakes me. My PCM told me I should talk to rheumatology and GI about putting me on an ulcer medication for Behcet’s, and I agree that we’re probably at that point. IVIG works, for three weeks, but during the week before my next infusion, I have GI bleeding, vomiting, the whole GI disaster. The doctors think that my digestive pains may also be due to strictures from where ulcers have come and gone so many times that they’ve left scar tissue. If that’s the case, there really isn’t much that can be done (in my opinion). Surgery isn’t something I would consider because I don’t heal well.
The most aggravating thing has been adjusting my expectations. While I wait for disability, I can’t do much. I don’t have the funds to do much, and the threat of expensive occurrences always looms. I had a tooth fall apart, and just spent nearly $1000 to have a crown put on. (I owed some back payments to the dentist, which drove up the cost.) Additionally there are the costs of basic things like transportation to and from appointments. I’ve been fundraising for a new wheelchair so I can do more things, but the fundraising takes time. Right now I look at things I want to do, things I’ve planned, and my heart breaks.
For example, I bought a ticket to a concert in Santa Ana on the 15th. In my mind I could go. It was between infusions, and I just sort of assumed I could sit at the venue. Well, not only can I not sit at the venue, but getting to and from the concert is proving to be impossible. I could take the train up, but the concert will end before the final returning train. I can’t afford to stay up in a hotel. I also don’t want to waste time and money going to a concert if I end up fainting because I can’t sit down. This is the time when the portable power chair would be useful, but I can’t afford it.
I’m not frustrated, I just want to smash things, no biggie…
I think the hardest part, for me, is accepting that I’m sick. It’s odd because I’m always talking about how other people don’t get it. They’ll say, “when you’re better,” as though I have a cold or something. I’m not getting better. I may have better control of symptoms, but I’m not going to suddenly be free of treatments and medications. There are patients who go into remission, but my chances are extraordinarily slim. We may cut back on my seizure medications at some point, but the idea terrifies me because of how severe my last few seizures actually were.
Sometimes my apartment feels like a prison, until I realize my body is the prison. There are so many things I want to do and experience, but the reality is I can’t.
Why do so many people hate the idea of accepting the things we CAN’T do?
You can’t always do everything, and part of chronic illness is accepting the things that we can’t do. I’ll find ways to accomplish more than what I’m accomplishing now, but there is nothing wrong with understanding that we can’t always do all the things.