This is one of those situations where I am surprised that I keep letting myself be surprised at the setbacks. You’d think that at a certain point I would hand over the reigns a bit, accept that I don’t have control of my life for awhile, but that’s not really my strong suit. So instead I’m sitting here thinking about this time when I was about 13 playing soccer in a tournament and got knocked over by a player on the other team. I was face down on the grass and lifted myself up with my arms, raising my head and face toward her as I pushed myself up. From about a yard away she kicked the ball, as hard as she could, right into my face. You can’t see it but half of one of my front teeth is fake.
I’m not here to write an extended metaphor (I’ll save that for English 91 should I ever return to campus), but basically I feel like I just got smacked in the face again. In addition to my gut, I found out last week that I have GVH in my heart. It presents as a coronary effusion, which is a fancy way of saying that there is fluid around my heart. Right now it is not affecting my heart function and it was mainly leading to symptoms like dizziness, chest pain, and exhaustion.
The good news is that it can be fixed. The bad news is that I am now back up to my full dose of steroids (my face is NOT cute right now) and this has pushed my timeline for immune reconstitution back further. It will take about 3 months to wean from steroids and we don’t plan to try again for a couple of weeks. Then, it will take at least 3 months, though likely closer to 6, before I am a ‘normal person’ again. Baby steps.
In the mean time, I am enjoying my first real week of having energy since we got the heart GVH under control. A lot of people ask me what I’m reading/watching/doing all day and the truth is that until now it has been a TRULY amazing level of absolutely nothing. Like can’t even sit through a TV show. So I read articles, scroll through instagram, daydream about food I can’t eat or the future when I can go back to school. But in the past week or so, I am starting to feel like myself again. I have set goals like:
- sit at my desk for an hour
- paint my fingernails
- choose a book to read
- walk three blocks
- watch a movie all the way through
Like I said, it’s all baby steps over here. Much better than needing anything drastic, but frustrating all the same.