I literally forgot that I also have LIVER gvhd in my last post. I have more problems than I can even remember. Anyway, my health has been improving (very slowly). When the scleroderma first appeared in September, they told me it would be at least a year. They were right. I’m still not ready to go back to school, still extremely disabled and miserable. Not much has changed physically since my last post, but there is an upward trend. I am now down to 50 mg every other day of prednisone. It’s less, but still a lot. I am definitely not ready to return to school yet so I’ve had to extend my leave through spring. I am hoping to go back in June but I’m not sure if that’s realistic at this point.
These past few weeks have been especially tough because I have begun to really grieve my own life. When I was diagnosed with AML at 19, I knew it would suck. But I also had the expectation that I would either die or get better, and if I got better I would jump back into life. Obviously, this hasn’t happened. As the years pass and I get older, I’m realizing that my young adulthood is passing me by. I will never get these years back. I’m 22 and have been essentially a full time patient for three years. I’ve grown up a lot over these past three years and I’m ready for all the same things my peers are – a career, financial independence, a partner, travel – but my life cannot reflect that. By the time I can even be somewhat normal, I’ll be 23 or 24. That’s a very different life stage. I’ll never get to do all the dumb 19-24 year old stuff I’m watching my friends do. Sure, 25ish is still very young and I will make the most of it then or whatever, but it’s still a hard thing to process. The point of all of this is that I’m realizing that this is a LOSS not a DELAY and that is devastating. You can’t just cut and paste me back into life.
There are a few reasons I’ve been out of touch. The first is obviously that I have been incredibly ill. The second is that I cannot bear to hear about what I am missing out on. I cannot talk to the people I took classes alongside, knowing I did everything just as “right” as they did, while they get salaried up and live their best lives. But the main reason is this overwhelming grief. I have been really angry. When a friend complains about their appearance or a minor illness, it makes me so mad. Not because their problems aren’t valid, but because HELLO I am standing right here with 30 pounds of fluid in my body and face and you’re upset you’re not wearing makeup? It makes me feel like they think it’s fine for me to be ugly, because I’m a sick person, but not them. If it’s so awful to not be wearing makeup, imagine how AWFUL it must be to look like me. This is frustrating both because I have to feel ugly all the time and because I feel like everyone has decided that as a “sick” person I can handle all of this and somehow it affects me less. It doesn’t. You never get used to suffering, and the assumption that I have makes me so mad. Sometimes I think about how I live on the brink of death constantly, and how sad it would be if I died at this time while I’ve been so angry and out of touch. Like, if I had died two years ago at least I would have still said goodbye etc. in a polite way.
I think I am moving out of anger and into sadness now. I hadn’t really cried over being sick much, but once I started it’s like I will never stop. The worst part is that my eyes hurt like crazy every time I get upset, to the point that I’m now on oxycodone pretty much daily. To be very frank, I have spent the past 6 months wishing I was dead almost every second. It’s not about my mental health, but about the torture of being in my body. Then I look at what the rest of my life will look like and I realize I will have to grieve forever. When I’m 28 and everyone starts having kids? Infertility. I mean, there is no end. I have to be bald forever. GVHD this severe doesn’t always go away – even if I get through this scleroderma, I never know what will be next. The thought of the rest of my life is exhausting.
Last week, I had a mental breakdown and tried to get a new car. I won’t describe the breakdown (I do have a shred of dignity left) but I will say that the doctors considered scanning my brain to see if a tumor was causing me to behave this way (nope, it was all me). I’ve been driving a 2005 VW Passat since I was 16 and I love it. It’s my baby. But it has a lot of issues at this point and I’m too tired to fight it anymore. I just wanted something that works. So I signed a lease takeover on a Chevy Volt with a bunch of upgrades and I was pretty excited about it. Then, the dude took it back at the last second after I’d already driven kind of far to see it and sent in my side of the paperwork. I’ll find another car, I know, but can’t something just be easy?
Facebook reminded me that three years ago on this day I was in London. I was on a solo trip on my way to studying abroad in South Africa. I had undiagnosed leukemia. It was horrible, but not as horrible as this. Remember this person? I hardly do.