Becoming the disease

I’ve been off the Halobetasol for over a week now. We still don’t know if the new eruptions are spread of the CTCL or if they’re a reaction to the steroid cream. I’ve had several doctor’s appointments yesterday and today, and one was to Dr. Fell. He rebiopsied me in the area of one of the new eruptions. Hopefully it doesn’t come back as spread.

Regardless of what it is, I won’t be able to use the steroid any more. Plan B is in the process of getting set up. I’ve a referral to Dr. SunBeam for phototherapy. They managed to squeeze me in on Friday morning. Apparently there’s some big dermatologist convention going on this weekend, and both Dr. Fell and Dr. SunBeam are going, so I’m lucky to have gotten in this quickly. If all goes well, I might be able to start the UV therapy next week. Now all I have to do is figure out how I’m going to explain the sunburns at work. I’ve told very few people what’s going on, and I’d prefer to keep it that way at present.

I also had my annual transplant check-up yesterday. I actually got to see the transplant surgeon who followed-up most of my case five years ago. Apparently the diagnosis of CTCL has made me interesting again (the last few years I’ve seen the least senior person on staff). Apparently he’s never seen a case of mycosis fungoides before in a transplant patient, and only seen one case of it ever, back in his own intership days. Guess that makes me special.

Today I saw my regular family doctor. I’m not sleeping, I’m getting frequent headaches, and my blood pressure is nasty (180/100). Stress is a fascinating thing. It’s making me sicker than any of my illnesses. She gave me Ambien controlled release to help me sleep, and warned me about the potential sleep-walking side effects. She told me she has had one patient who actually raided the refrigerator in their sleep on this stuff. I’m figuring that if I get to sleep at all, I’ll stay asleep. Frankly, I’m too exhausted to go on any major snack attacks at night. Unfortunately, I have been doing some stress related binge eating when I get home from work some days. I’m still below my Weight Watcher’s goal, but I won’t be if I keep this up.

I’m meeting up with Dr. Seventeen Cats on Sunday (formerly Dr. Twenty Cats)(it’s been a rough winter). And I’m going on a bonding/shopping expedition with my two sisters on Saturday (apparently my diagnosis of CTCL has made me interesting again to sisters as well as doctors). I seriously need to take a day or two for just me. I haven’t been to Baltimore for years. Perhaps I’ll look into taking a few days off and doing the inner harbor. I’m obsessing too much about my situation. I swore years ago that I was not going to become my disease, and I see myself falling into that trap now. I may have a complicated medical history, but I’m still healthy, and I need to do something to remind myself of that.