Ok, if you want to read the post that was originally here, you'll have to go to my other blog. It was written on there, for there and still posted to here. I left it here long enough for me to go take a nap.
So, now I will post about what I'd planned on.
My rheumatologist is a good doctor, and I like him a lot, but I have the feeling, he's going to frustrate the ever living fire out of me because he's right.
Inspite of my increasing pain, he won't make any changes in my treatment. He had a couple of reasons, both of which, made sense. Neither of which, I liked to hear. The first, was something I have control over ... although, I don't like to admit that I do. The first one, probably the biggest reason, more serious and nothing I can do anything about, nor can he, or anyone else. I just didn't like hearing it. The first thing he wanted me to do for the pain, is to keep an activity journal. He has the distinct feeling that I am over doing it, and that is causing a significant amount of my pain. Well pfffth. I've complained to 3 friends that he said this, all three said "gee, ya think?" Well, pfffth! So, my friend C. keeps asking me "have you started your 'rest journal' yet?" I told her it's an activity journal. She said that SHE is calling it a rest journal to remind me to rest. So, the next day, she asks me again. And again. Today, at church, she walks in and asks me if I started it, and i remind her that I have to get a small notebook first. She hands me this Betty Boob Notebook that fits perfectly into my purse. The second thing that I came away frustrated with. He was right. Completely, 100%, but it made it no less frustrating. I'd asked him about a different drug for the lupus. While the Cellcept that I take for the MG is also a lupus drug, it is obviously doing diddly squat for the lupus. It is making DRAMATIC progress in my MG. (see previous postings in March about my physical therapy sessions! Before Cellcept, I couldn't walk up stairs, i had to go one foot at a time, and would not be able to make it up a flight of stairs without my legs giving out on me.) I am not willing to go OFF of the Cellcept to take something else for the lupus, I want something in addition to the Cellcept. He, had already thought of this. He'd already considered the options. He'd already talked to my neuro. They agree that taking me off a drug that is working for MG is foolish at best, dangerous at worst. But, he felt that my overall health isn't stable enough to add something else. The drug that he would use, is not one he would use in addition to Cellcept, it would instead of Cellcept, and it does not have a good track record in treating MG. Therefore, it makes it a no go. The part that was hard to hear, was when he said "When it comes to treatment, your myasthenia must take presidence. (sp?) You have life threatening Myasthenia Gravis, you do not have life threatening lupus. If that changes, then we take a look at things differently." He's right. I don't like to hear it put that way. Right now, the lupus, on a daily basis is such a big deal, and the MG is back there, it flares a bit ... it's flaring now because of overdoing it at the concert ... but in general, the lupus is so much more on the quality of life issues. BUT. If i were to stop taking the drug that is treating the MG to treat the lupus ... the MG would quickly revert back to what it once was, when I couldn't even dress myself without assistance. Days like today remind me just how icky MG can get. I went to lunch with friends after church, and choked. Couldn't swallow right and my food tried to come out my nose. growl. Double vision is a real bear to deal with today. Breathing ... oh, am I supposed to be doing that? So, today is reminding me that the MG really DOES have to take the primary role in my care inspite of the pain. It is very frustrating to realize that there isn't much that I can do. He said maybe in a few months, when they get the insulin resistance settled, when I'm past the knee surgery ... when the other health issues settle down, we'll see what's happening. But for now ... he's afraid to tip over an already tipping apple cart.