I have been doing well. I feel confident that I will be fine to wean down a little further starting today. I do wonder though, will my body eventually realize, “hey I’m not getting enough of this damn drug, so I’m going to relapse!” I can never know when that low level is…..until, that is, 6 weeks out when the therapeutic level has been diminished and depleted in my body and the evil disease begins again. Please, please please NO! I never want to relapse again!! I can not even bear to think about the pain, the drenching sweats and fevers to 103 degrees, the chattering teeth so hard that my jaws feel like they are in cramps, the tell-tale rash that starts first as a warning that the level of the drug is now too low and soon the spiral is inevitable. There is no way pst this point. I know very high steroids will be the only way to return to normal and then a very high dosage of MTX and then vomiting, vomiting, vomiting. UGH! But really, its the big, fat, bloated face that just kills me. I am so vain.
I was tired yesterday. I was very, very, very, tired yesterday. I worked a long day at one of the 5 hospitals I go to. And I over did it, but my productivity looked awesome!! But then I drove home with the heater up as high as it would go, freezing cold. I know this symptom, it means I have over done it. My wonderful husband had baked chicken, basmati rice, broccoli and nice green salad and he hand made carrot cake for dessert. I am so lucky to have a supportive husband, that really works too much and even has time to make a great dinner. I ate then went to sleep for 13 hours.
One would probably wonder why then go down on the number of pills per week? Well, I am so tired of taking these pills. I get sick to my stomach, I feel fatigued and it ruins my endurance. So, If I can just lower them so that I feel 95% normal then I will be happy. I mean, seriously, I dont ever want to completely off. I have tried 3 or 4 times before and we all know that story. So I am ok with staying at a low dosage. My desire would be to get down to 2 and stay there, forever…
Here’s a strange thing, I saw the physician, that fateful physician, the one who told me ” OH, that patient is not infectious in that way, you dont need to put on the protective garb” the other day at one facility have been working at occasionally. I asked him, “so you left the other hospital?”, he said “yes, I did” and had a strange look on his face.As if he had a recollection about something, but couldn’t put his finger on it. Then he walked away. He has no idea how that day, 9/2/2008 changed my life. I tried to tell him one day, at the original hospital about a year after it happened, but he said ” Nobody gets that disease, it too rare” and then he walked away, just turned on his heel and walked away. I watched him walk away thinking to myself, “hmmm….interesting, I almost died and tried to let him know of what and he thinks I made it up. “oh well…..” I had come back to work for a few months at that previous hospital, when I was well enough. Oh, if he only knew……how rare it is indeed.