Well the great news is Remicade seems to be working for me. I am working my part time teaching job, and also running the gallery, which occasionally requires that I am moving earlier than my body wants me to, and up later than I normally would be. To be fair they aren’t on my feet 8 hour a day jobs. The teaching job is hectic and crazy but so much fun, and I can manage it because I never work more than three hour stretches, and I am hit with severe fatigue and often pain right after, I go right home to bed afterwards. At the gallery if I am feeling bad then the worst part is driving there, then I can sit in a chair and work on some project, cuddled close to the heater. If its brutal cold I just can’t manage there at all though. Before the remicade my days were less productive and my pain was much more often at unbearable levels. My energy is up, although I still feel like a big of a slow moving but determined slug. I can tell when its getting close to Remicade time. My body starts hurting more, and my migraines get very intense.
The bad news is my allergic reaction to Remicade that they have been managing with the pre-meds. If I don’t have premeds half way through the infusion I get a severe itch. Not just a normal itch. The kind of itch where you can’t think of anything but the itch. Where ever part of your body itches. Even things like eyes, and inside parts. 6 weeks ago I got the premeds but woke later in the day with more itching. I just took over the counter antihistamines and the itch didn’t go away but it became bearable. This last infusion I got my premeds, and fell immediately asleep. I woke two hours later with a mean case of itches, my arm also had a huge hot pink rash, at the injection site that went from wrist to elbow, they quickly took my temperature and realized I had one. They gave me another dose of the anti allergy cocktail and told me that I was maxed out. They slowed down the infusion and waited for most of the symptoms to subside and sent me home. At about midnight I woke up with the horrible itches. The question is can I stand the itches? Possibly. But also the side effects seem to be escalating. Its two days later, and all that there is left is a mild, irritating itch, but I can handle this. My doctor did offer steroids. It was unclear from the phone message if it was meant for just this time or for every time after the Remicade. I haven’t called back because I really don’t want steroids. Every time I take them I put on 15 lbs and that weight never seems to go away but just add up. I can’t do that every six weeks or I will be dead soon. My body already feels huge and sluggish for me, and I just don’t have the energy for even mild exercise at this point with all the rest I am doing.
I am going to attempt to go to work today. I have a very busy week this week, the gallery is open, there is an exhibit I must be a good neighbor and attend, there is a small, I want to take care of a friend in mourning, and I have my kids classes to prepare for. I have a class in San Marcos starting next week. I am a bit nervous as it starts about the time I go to bed, its a longer drive than I am used to making lately, and I will probably be in a lot of pain before the class even starts for the day. If I had less going on this week or more energy lately I would feel better about it. The good news that I have to remember is that no matter how bad I feel, I always seem to be able to pull it together for a few hours for the kids. The work is so rewarding that it doesn’t matter how badly I feel beat up after. Its awesome. So pain..yep..but not as bad…energy…yes..just enough to do what I have to do…and the life…well life is awesome…life is worth living, every day.