There are certain situations that really are troubling & conflicting. This is one. I feel so deeply for the patients at this center.
I admit it, I’m a hardcore digital & app geek. Probably equally or more so than I am a healthcare geek. My iPhone is literally another arm. But there are valid reasons for that given everything I need to keep up with.
I knew one day that I would have a time come where I was physically unable to work a standard workday & still take care of myself. I had tried preparing myself for that in the back of my mind as I had for other things, like oxygen & potential transplant. I always felt though it was going to be on my time & my say, not the diseases. Obviously, sometimes things don’t work out according to plan.
One would figure by now that I would know tuberous sclerosis complex (TSC) and lymphangioleiomyomatosis (LAM) inside and out. I know quite a bit, but there’s always something to learn in dealing with these diseases because of their unpredictability. Luckily right now, I’m in good shape with the TSC aspects & it’s just tracking research updates & advances. But there’s a few new aspects that are waiting in the wings for me to dig into.
I wish I could take credit for that anonymous quote and the quote on the blog image. They both seem fitting right now. Sleep is something I’m getting more erratically these days. I know it may be just a larger short-term issue right now as I’m trying to develop new routines. But I find it’s annoying to finally fall asleep later at night and then be up right away at 6am. I can be a morning person when I have to be, but it’s not a natural thing for me. Without my morning coffee or shot of caffeine, forget about it.