Saturday, July 31, 2010


my latest adventure in healthcare: i'm getting physical therapy.
For the chronic pain in my upper body. The pain meds don't work anymore, and the pain has been keeping me up at night and driving me batty.
It seems I have overworked the front of my torso with guitar playing and swimming and typing, and totally not used my back and shoulders.
My evaluation was illuminating- they could just about literally push my arm down with a feather. No strength at all.
So, we're working on strengthening the back/ shoulder muscles.
I get heat (ahh), a brief massage (ahh), then she pushes on my spine (ugh!), then we get to exercising, then ice.
word to the wise: all PTs, like all doctors, are not the same. I asked a neighbor who is a PhD in PT, where I should go, and she sent me to a sport medicine facility. these folks were great diagnosticians and their goal is to get you back to doing the things you love- not to tell you that you just have to live with the pain and limit activity.
A cool little apparatus I came home with: the backnobber. You can basically massage yourself with this thing, get those knots out of your upper body. Very cool for me, because my back recreates those things pretty quickly after they are rubbed away.

So far, I am seeing improvement, and at this point, that's enough to keep me going back.

Wednesday, July 21, 2010

New Clinical Trials for lupus

Hey y'all
There are several new clinical trials open for people with lupus.
I don't' know anything about them, except that you need to be diagnosed with lupus and live near the clinic (birmingham, AL, Indianapolis, or Phoenix).
Have a look.

Sunday, July 11, 2010

My arm is fine (mostly)

Well, I learned a new word yesterday: enchondroma.
This is a kind of tumor when part of your bone turns back into cartilidge. Apparently, bones start out this way in the first place. So, unless this thing becomes cancerous (only some of them do) or much larger (I'm in that "not quite a problem but almost" zone), we won't be doing anything but monitoring it. No surgery, no chemo (phew! I don't have to lose my hair again!).

I will, however be getting one more test just to try and get a little more info: a radioactive isotope test. Yes, they're shooting radioactive dye into my veins. Then I have to wait 3 hours while it works its way through my system and then i lie around for 45 minutes while they scan me. I'm pretty good at lying around, having had much experience, but I'll keep practicing just to be sure. One more adventure in health care. And I get to hang out at Sloan Kettering in New York City, the creme de la creme of hospitals. Even the robes are nice. And the doctor was great. I'm telling you, I'm never going back to my old cruddy system of just grabbing the first guy out of the phone book. If you must go to a doctor- and if you have a chronic illness, you must- wow, referrals are so important.

Meanwhile we haven't figured out what's causing the pain in my arm, as it may not be the enchondroma but possibly one of my various autoimmune conditions. We're complicated creatures, we autoimmuners, and we can be very tricky to treat. If it's not the enchondroma, then perhaps it's the chronic inflammation. Just guessing.

'Til next blog post,
Be well, all. and thanks for all the well wishes.