That’s literally the truth, what’s next? I’m completely confused by what’s going on. Have no idea of what to expect next. Obviously, there has to be an order as to how the graft versus host disease manifests itself, how and why but I’m not knowledgeable about it.
It’s becoming obvious to me that the graft disease is going to manifest itself, at least in part, through skin problems. There have already been times when I’ve looked like a boiled lobster over most of my body. Itching, scratching and skin discolorations have all been characterized, so far, as “minor manifestations” of graft versus host problems. No doubt I’m going to have to learn to be very careful in order to avoid the morre dangerous problems. There’s so much to learn and, frankly, all I want to do most of the time is to sleep.
I’m just beginning to realize how dangerous and how uncomfortable going through this process can be. It can also be very uncomfortable. Some of what happens is hard to describe but it’s definitely not comfortable.
I’ve been falling asleep spontaneously all day. No idea of what’s going on there unless by body is trying to make up for not having slept on Thursday night.
For the first time since I was released from the hospital about 10 days ago, we have been given 2 days off from having to go to the hospital. Normally, we’re there every day for from two to five hours. The hospital is daily checking blood and doing other testing. Time off is a relief. It’s like having a vacation.
I can say this. We’ve been treated very well