Tuesday, June 8, 2010


For the better part of the last three years, I've been living my life according to someone else's schedule. People in white lab coats, or people who worked for them would tell me where and when, and sometimes how. I'd say I was fairly compliant.

Now that I'm free to follow my own schedule, I find that I lack discipline and structure. Part of the problem is unique to me and my ability to procrastinate. The other part of the equation relies on Murphy's law. At some point during your adult existence, you will come to realize that the universe has a total disregard for your plans. Your perfectly planned schedule is but a pipe dream.

I planned on turning in three lessons for my independent study class this week. I was supposed to have finished the bulk of the grunt work today. I'd planned on getting most of the reading done this weekend. It didn't happen.

The reason none of this happened has to do with an itch. That small, persnickety feeling under the skin. Cats and dogs know what I'm talking about. I've seen the looks of intense satisfaction on their faces when a human scratches them in just the right spot--that place just beyond their own reach.

I itch. Nearly everywhere. It's distracting. I have trouble concentrating because of the itch. Saturday, Chris and I had to make a late-night run to the drugstore in search of something to help. I've been taking Atarax for the last ten days to help with the itching. It tamps down the sensation for a brief period of time. The itching becomes like white noise on Atarax. It doesn't last very long.

There are rashes on my back, flanks, abdomen, chest, arms and legs. This is in addition to the stuff on my face. Scratching doesn't help. I've been scratching so much, I'm afraid of tearing my skin. I emailed my transplant team at MDA in the hopes of being prescribed a magic pill to help with my discomfort.

I just got a call from my transplant nurse. My doctor wants to see the rash. This is the one in Houston. I have a regular check-up on the 23rd. She wants to see me tomorrow. In Houston. This is nothing to be alarmed by. She wants to see my skin before prescribing anything. In the world of skin GvHD, a verbal description just doesn't cut it. It's not one of her regular clinic days, but as it happens, she's going to be seeing another patient tomorrow, so she wanted to fit me in.

Chris is taking the day off from work to drive in with me. Yet another schedule interrupted.

I have a sneaking suspicion that I'll start taking Prograf again. That would mean that I'd have to start taking a handful of supporting pills as a result. Anti-fungals, anti-virals, and the lot.

Chris and I will tweet throughout the day. Our twitter feeds can be found in the side-bar on the right. I'll post something on Thursday, the universe permitting.


Susan C said...

I'll be thinking about you and Chris tomorrow and hoping that your doctor comes up with a good solution.

Nancy said...

I'm so sorry you are so itchy! I used to get Vistaril for intense itching. I scratched myself bloody at times. I hope they can give you something to control it and I hope your appointment goes well. Have a safe trip!