Ok, it’s technically March 2nd now, but I intended this for the first day of March.
Good news- last Tuesday, my Upenn visit actually had improved results! Barium swallow went ok although it was unpleasant, and then my pfts went up! to 60%! I think I was wary of being too excited about it like I was last time, because the fact that the doctors don’t know why it goes up or down is really scary. It could so easily drop again, so I don’t want to celebrate too soon, but I think finally this week it’s starting to kick in and I’m starting to allow myself to dream again and envision a future I want. The doctors think it could be a combination of anything they threw at me, including a possible delayed effect of the steroids back in December, or the additional medication they tacked on, and the fact that I was exercising more diligently.
Honestly, even though it would be great if pfts went up more, I don’t want to be greedy, and I’ll let myself be satisfied as long as the pfts are maintained over 50%.
I’ve had this recurring dream that even though I already earned my high school diploma, I keep being stuck and for some reason, because I have no other options, I am repeating the same year of school over and over again, even though my age keeps going up. It’s a bit of a nightmare in its ordinariness, but I always feel unhappy in the dream, sitting in class listening to some teacher in the background, until I come to the realization that I don’t need to be there, and I don’t need to ace the upcoming test, because I’ve already graduated.
I also have this other thought that kind of concerns me a bit. I wonder if reversed, if I had a friend like me with the kind of complicated, invisible condition, if I could put up with it. The little things like letting them have the bed because they have terrible sleep and desperately need every ounce of energy, or being willing to pay more to accompany them in an Uber as opposed to the subway, or getting the weights for her so she can save the actual little bit of energy for lifting rather than carrying the weights back and forth. All my close friends have done this for me, and I always felt like a terrible burden. I also realize that I’ve always been a very impatient person. I was restrained by my health, but now that I am more free, I’m not sure if I could really stand being so patient after being forced into patience my whole life.
I’m also gaining more weight than I’d like. For some reason, I don’t know if it’s my diet necessarily, or my steroids or what, but the weight gain is bothering me a bit. I went from 113 to 117 when I weighed in this past Tuesday, and then then next day hit 118, the heaviest I’d ever been. But the following day, dropped to 115. Now I’m actively dieting and working out more again because I’d really like to hit 113 by the end of this week, at least.
My ideal weight is 105-110. I’m pretty sure I can do it, because I know what I have to do. Last time I lost the steroid weight by eating oatmeal and a banana or boiled egg every breakfast, and just cutting out more sugar. I don’t like having a weird turkey neck and puffy cheeks, and having a muffintop so that I can’t even properly bend down to pick things up…
The other day, I passed by the vehicle registration center… and I was planning to go in to register myself as a donor. But then for some reason, last minute I swerved and continued straight. I’m not sure why I did that, what was I scared of? I guess I didn’t want to confront the possibility of death so soon, even if it was only a possibility. But I know it’s what I want to do, but it’s still a scary thought to think about.