November 9, 2000
Tina asked if I could keep a journal about my experiences with a new treatment for severe Ra, SLE, MS and other autoimmune diseases. It's taken me almost three weeks to start, because my feelings have been on a roller coaster ride, since I was asked if I would like to participate in the study.
I guess I better explain a little bit more about what I'll be doing. For a few years, various research centers have been trying to "reboot the immune system" of people with a variety of severe autoimmune diseases. At the beginning of the studies, people had all of the blood cells in their bodies killed with a variety of different agents, after they had blood or bone marrow removed to give back to themselves. A lot of people did well at first, but sooner or later they would relapse because they were giving themselves back the illness they started with. But researchers found that Cytoxan, kills all the blood cells, except the stem cells, they are the one that make all our other blood cells.
So before I loose all my readers in the techie stuff, your might be thinking "who the hell would do this to themselves" and be happy about it, well possibly me.
I've been on a roller coaster of feelings for the past three weeks, since I was asked if I would like to be involved. First, I was excited, I've been ill since childhood, my parents say, since I was an infant, with high fevers, joint pain, plersey, mouth sores and so on. I'm sure all of you know how it feels. I'm now 45 and to me it feels like sink or swim time. I don't feel like I have a life I have an illness to manage. I feel like the guy in the anti-cocane commercial, I take more pills to stay alive, so I can stay alive to take more pills. The final straw for me was starting the worse flair of my life, my senior year of college at age 35, and during my first year of grad school at West Virginia. Try getting around that campus with joint pain, but that' another story. Anyway I had to drop out, move to the monster city that is the East coast to be close to my parents, and go on disability. The day I got my disability letter was one of the worse days of my life, I seriously thought of taking my own life during this time. This was as bad as having a flair after my son was born, I wasn't able pick him up, someone would have to pick him up and put him on my lap.
I guess your asking what does this lady have, well now I am too. Until last week my current diagnosis was SLE with secondary Sjogren's syndrome, and
autoimmune hearing loss, to which was added recently Lupus cerbritis, after I had some seizures this summer and MRI changes with lots of balance problems.
Well, last week I had my first visit with the Hematologist, who does the procedure. The first thing he said was, I don't know what you have, but, it isn't Lupus. Well, shit, we're back to "name that illness." I'm really tired of this game, I want to quit this game, I want to take my toys and go home from this game.
I have spent this week, staring at the wall, sleeping all day, and and wondering why it is taking it has taken 40 some years to get a name for this thing! I can still be in the study, but they have to get a name for this, give me a break!
I'll quit for tonight, but I'll be back to rant some more soon.
December 11, 2000
This first sentence is always the roughest, I keep remembering my freshman English comp professor in college
saying, "If you don't get them right away, you have lost them". O.K. That's out of the way.
To make a long story short, it doesn't look as if I qualify for the study, due to my misbehaving antibodies, which after a year of being positive for lupus in nice pretty rows, have all turned negative. I just give! In addition the docs have been arguing among themselves about the extent of my illness.
My neuro thinks it will get worse, but he's the one most opposed to my participation! At my last visit, he mentioned that I might have to start plasmarpharesis treatments soon, as an alternative. The Hematologist, who really thought I was sick enough for the study, wants his positive antibodies. My RD as always, is incredibly kind and supportive.
Well, I may have some help from nature in all this. Over Thanksgiving, I got the worse
respitory illness I've had since childhood, with two nights awake coughing to the point of vomiting. And wheezing, the likes of which I have never experienced before. My heart truly goes out to those people with
asthma, I thought lupus was bad, but nothing has been as frightening to me as the last week as a chest full of gunk that is suffocating and will not budge.
Anyway, I have been taken off my cyclosporine, till at least the infection is over, I bet the antibodies will be back soon. This all made me think about my participation in the study. When I went for my RD appointment last week, the first thing I said was, I don't want to be in the study. This was starting on day three awake, from the coughing. All I could think about was the fact that after the treatment I will have to
re-experience every infection I ever had all over again, including this one! On the other hand, my neuro problems are quickly accelerating. I'm hitting keys two and three times in a row, and this week I caught the sleeve of my shirt on fire twice on the stove. It seems like I have no idea of where objects are in space, when I reach for something I miss, and if I head for the door I run into the door jam. I'm also loosing my hearing, and experiencing a severe intention tremor and bunches of other scary stuff. I've decided to go with a social service approach to my neuro problems, my insurance co. is difficult, to say the least. So, I'm looking around at the private agencies to see if I can get some help to stay independent, I really, really, don't want to move in with any relatives after years of independence. I've applied for a service dog, thetas looking good. And I was referred to PT for balance and gate training by my Neuro, but the rehab center is over an hours drive from here.
Speaking of driving I had the strangest thing happen. About 3 months ago I had a seizure and went to the ER, the ER doc said to limit my driving, which I did. Last week I got a letter from my states DOT that my drivers license had been restored, I didn't know it had been suspended! I could see the results if I had been stopped for
anything, and asked to walk a straight line.