I wanted to use this entry to mention some of the things that have been going on with my body. I noticed while reading past entries that I tend to allude to a lot of issues without really fleshing them out.
For instance, this hip problem that was causing me so much pain and leading to entire days spent in bed turned out to be bilateral trochanteric bursitis. Or, inflammation of the outer bursa in both my hips.
The last rheumatologist I saw in Cleveland might have been insulting, but she did actually examine me and discover the bursitis. I got a steroid shot in each hip that visit and as a result haven't had to rely on my cane for a single day since.
This makes me even more infuriated at the first rheumatologist I saw who was so focused on NOT treating my pain that she missed a really obvious diagnosis. People with EDS are prone to developing soft tissue arthritides.
Before I left Cleveland for Philadelphia a sympathetic pain management doctor prescribed a month's worth of Vicodin. My pain level went down and my activity level went way up. And then I ran out, replacing them with Darvocet, an apparently inferior newcomer.
The Darvocet came from the latest rheumatologist I saw, selected from the Ehlers-Danlos National Foundation list of physicians. I'm not sure how she wound up there, because the appointment concluded with there wasn't really much to do about EDS and maybe I should see an orthopedist. She didn't, much to my surprise and relief, downplay my pain.
I'm not sure, it was a strange appointment. I think she just didn't quite have a handle on what EDS did or how it was diagnosed. She kept asking if my geneticist was sure I had it. I kept saying yes. She also made me disclose my entire psychiatric history, an experience I found so uncomfortable I finally said that it was ten years ago and I didn't want to talk about it because I didn't see how it pertained to my treatment now. Then she said I might overdose on my pain medicine.
I said if I wanted to overdose, I'd overdose on something sure to do the job like Tylenol which is readily available. By this point I was getting curt. What is it about these appointments that try to make me feel like a big baby who can't take care of herself?
All in all, I'm not sure it's worth the almost $50 it takes to rent a Zipcar and get there.
I have two more appointments upcoming...one with a physiatrist and one with a different rheumatologist. I hope one turns out to be a good fit. 'Auditioning' doctors is expensive and I'm not sure that I'll be approved for medical assistance.
On the positive side, I think my autonomic nervous system might be trying to heal itself. My GI side effects have gone way, way down. The loss of appetite is still fairly constant, but the nausea and vomiting have almost gone. I still get constipated, but it's not nearly as bad as it was, even with pain medicine on board.
I feel cautiously optimistic.
ETA: On the POTS front, I still wake up every morning tachy, but medication (Florinef and beta blocker) seem to have that under control.