So, once again, it's been a couple weeks since a substantial helath update. I'm sorry; sometimes I just don't feel like I have anything new or different to say that I haven't already said at some point on my journey... and then a bunch of stuff happens and then I'm really backlogged.
I have been having a really tough time with pain for the past several weeks. My mom pointed out that this is the third year in a row that I've had a bad "pain flare" around this time of year. The last two years, it's been in April. I guess this year it decided to come early! I finally called my Rheumatologist on Friday because it had been bad enough that I was pondering going to the ER. The PA got me an appointment, which was very nice, and so I got my sweet little brother to drive me there, since I was in no shape to be behind the wheel of a car.
I arrived, and I got a new nurse who was bent on following procedure to the letter. I was in such terrible pain and just wanted to curl up and die... and it took her 20 minutes to review my medications. It was a test of patience. You know how usually you get checked in by the nurse, and then wait awhile to see the doctor? This took so long that the PA was actually waiting outside the door for her to finish.
The PA came in and told me that she'd been talking to one of the doctors, and was thinking about doing Remicade and sulfasalazine for my arthritis and Crohn's disease. The only problem is that I don't have Crohn's, sulfasalazine gives me pancreatitis, and I "failed" Remicade a few years ago, and it's supposedly less effective if you go on it after having stopped for more than a few months (although it may possibly still be an option).
She looked at me in surprise. "But you have Crohn's!" Well... no. I don't. I had UC. "But if you had UC, you should be cured since they took your colon out! You shouldn't have arthritis!" I know... tell that to my body!
I've exclusively seen the PA every time since last fall, at least 7 times, so it made me slightly nervous that she doesn't know that I had UC, but after working with medical professionals, I know that they don't (and simply can't) have patients' charts memorized. I'll also be the first to admit that my chart is probably bulging at its metaphorical electronic seams. So I can't really get too worked up about that. But patients, remind your health care provider every time of your diagnosis, meds tried, and allergies. Although my rare and very serious reaction of pancreatitis to a sulfasalazine derivative is listed under my allergies, I can't tell you how many times they've tried to put me on some type of suflasalazine medication. Be your own advocate... or you might die. Just a friendly dramatic tidbit. ;)
Anyways, she had to revise the plan, since she didn't realize that Crohn's wasn't my diagnosis, that I've already done Remicade, and that I have a life-threatening reaction to the other medication. After some discussion, we decided to try a short course of steroids to see if that will help the low-grade fevers, joint pain, and muscle pain. If everything improves, we know it's inflammation related. If the muscle pain fails to improve, but the other things do, we could infer that the muscle pain has a different etiology. If nothing improves, then I don't know WHAT we think, but we'll cross that bridge eventually. ;)