It seems as though it wasn't very long ago when I lay curled up on my bed writhing in pain. Somehow I managed to endure the agony while eluding death; never knowing how sick I really was. And then a visit to one of my doctors revealed that something else was wrong, and I was admitted to the hospital late one evening. In the morning during a routine EGD I would have a bleed out. Not long after this my family and I discovered that I was terminally ill. Compounded -- all these things and more started to weigh in and our lives began to change. We were in unfamiliar territory. That was more than two years ago.
This week I am re-living some of the past not because I am nearing a two year mark on the waiting list, but because some of the old pain is slowly creeping back. Moments of sharp stomach cramps and nausea occasionally give me spasms, and that relentless battle with sleep has returned. I am exhausted all the time. There are also newer symptoms that I didn't have back then. I am stiff and sore from muscle degeneration. My strength is more mental these days. Even here that is not my biggest strength. I am losing focus in simple conversations. I will be talking to Lois about something and I will lose my train of thought. I find myself reaching for other words to draw me back.
Despite all of this I remain wary. I take my medicine and try my best to keep strong. The words, "I am dying." or "You are dying." They seem to be spoken more often. Once, when this was all new, the words seldom came up. Now they are descriptive. Defining. They hold context. Something I never really thought about. And yet the thoughts have always been there.
The one thing that has always remained a constant is, "You have two to two and half years before transplant."
As that window narrows and my body gets sicker, I become more and more aware of this. Aware that the clock keeps ticking. There are no hands keeping track of time. There is no faceplate to look at. There is only an invisible clock measuring anxiety and frustration and the onset of new symptoms.
Thursday, July 1, 2010
I had an appointment today with my dermatologist. The enbrel seems to be working like it's supposed to. I also had a large lump on my side that I've been waiting to get checked. In the past two weeks it about doubled or tripled in size and has been hurting like hell. It turned out to be a big cyst. I figured the doctor would probably drain it and maybe send a piece of it away to be checked. That is exactly what he did. Now I have to wait until next week until I hear something. I hate waiting. He seemed pretty confident that there wasn't anything unusual about it, but he wanted to be sure.
There isn't much else happening. I don't have my next transplant appointment or labs for another month. I am starting to get anxious about that.
I have had a lot of bloody noses happening lately. The good thing is that they don't last. And I am having a lot of bathroom issues which tend to give me stomach aches. That is the downfall of taking so many diuretics. Plus I am still having trouble with losing my breath and my voice. It doesn't take much for me to get winded.
Some days I feel like I'm spiraling and I feel like I am getting worse. I just need to remind myself that I need to be patient and continue to wait. I just wish I didn't have this big hole in my side while I do it.