One of us?

Thanks to EDS Alert Newsletter, I learned that a Swiss doctor is speculating that Michael Jackson may have had Ehlers Danlos Syndrome. And if you don’t read French, you can read the article in mangled English, thanks to the power of Google Translate.

What do I think of it? Well, not much. I’m not big on following celebrities, so I have no idea if his symptoms really do match up with EDS. But even the speculation is helpful, I think. So few doctors have any clue at all regarding EDS. If a few of them read this article and start taking joint hypermobility seriously, then I will feel that something good has come from the circus that has arisen in the wake of Jackson’s death.

New Doctor visit

When I moved in March, I kept right on seeing my old doctor, despite him now being 15 miles in the wrong direction. But now he’s closing his practice in the area, and I figure if I am going to get used to someone new, it should be someone I don’t have to schedule an extra hour of travel time to see.

The new doc is a friend of the old one, so I am hoping he will have some person skills in common, since I like the old one. The new patient visit was yesterday. Summary:

Office is cramped. I don’t know how they get people in wheelchairs or scooters to the back. Maybe they move furniture. The scale is inconveniently right in front of the doorway to the hall. Speaking of which, I’ve lost 10 pounds since this summer. I’ve also lost .75 of an inch since the last time I was measured, way back in my twenties.

Dr. M. is nice. He listened to me describe my current condition and past things that I thought he should know about that weren’t asked on the new patient form. He said that the scar on my nose from the basal cell surgery was well done and acted like he could hardly see it, which either means he is extremely polite or in need of glasses.

He also prescribed blood pressure medication for me upon the one reading, and directed me to buy a blood pressure cuff. It seems a bit much to me to prescribe blood pressure medication off a reading at a new patient visit, but maybe there is something else he noticed or something in his notes from my previous doctor. We’ll see. He will find I am a reluctant meds user, so he’d better keep the number of prescriptions low. Already, I misplaced the bottle and had to go on a safari to find it, and I hadn’t even taken any yet.

I told him that my cholesterol was high the last time it was measured, but that I didn’t want statins because of the associated muscle weakness, and that I couldn’t afford any more muscle weakness than what I have. He promptly tested my muscle strength, which revealed itself to pretty much not exist. Ah, the old “squeeze my fingers” trick. Try to break them off, he said. Bwa-ha-ha! Hey, I’m just happy that I can complete a grip. Then he tested my arms and legs, with similarly sad results. Unless he can pull a magic potion out of his bag that will instruct my muscles to actually build, there is not going to be any useful change. (I can see it in his eyes, the question forming for next time. Would physical therapy help? No. No, it won’t. But it will be exhausting and painful. Thank you.)

And he renewed my pain pill script, which is good, because we are coming to the time at work where we are standing most of the day. Except when we are bending.

And he wants me to keep a migraine diary, because he thinks maybe I should be taking a preventative. Oh, this will be hard, remembering to keep it. And knowing what to say.

OK, so I begin with that today. Woke up. Left side of head, behind and to the side of eye, hurts. Treatment: Ignore it. Breakfast: cup of coffee with cream, gluten-free waffle with butter. Head still hurts.

Oh, one more thing. I bought that blood pressure cuff right after the visit, since I needed to go to the pharmacy anyways. Checked blood pressure last night at the close of work. Also checked my vegetarian boss’s. We have the same blood pressure.

Doctors. Grrrr.

Elizabeth, over at Screw Bronze, was relating her frustration with her doctors, especially with how they ignore her activity level, assuming that she just lays about all day. This got me going:

Doctors will simply not believe that you are active. Maybe it’s something they only do with women, but I have found it to be true ever since I was a teen. That’s when I went to the doctor to ask why my hands and feet were always cold, and the fat, chain-smoking fool told me that I just needed to run a couple of laps every day. I was in high school. I took Phys Ed. I ran every day, slowly and badly, but I ran. I also regularly walked the three miles home from school. And Dr. Fool was telling me I needed to exercise.

Same crap when I asked another doctor about why I couldn’t improve my stamina climbing the stairs and the hills. Never mind that I was doing it every goddamn day and had been for over a year, and it still wasn’t getting any easier.

Same crap when my joints started dislocating or being constantly painful. I’m supposed to exercise? Hey, idiot, there are plenty of people less active than I am, and they never dislocate a single joint or lose the ability to turn a door knob.

Grrrrrrr.

Sore spot with me? Yes, you hit it.

Elizabeth then asked:

Your doctor experiences sound WAY more frustrating than mine – did you eventually start taking a large friend or a mallet?

So, I’m continuing my rant here.

Naw. I respond by mostly avoiding the doctors. No matter what happens, I generally feel that seeing a doctor isn’t going to make things any better and will likely only result in pointless testing that reveals nothing useful. What good does it do to find out X, Y or Z if nothing will be done about it anyway? So I save myself the aggravation and just don’t go.

When I have gotten things I needed, it has been because I knew exactly what I needed before I went to the doctor and demanded it. I knew I needed splints for my thumbs and fingers. I demanded I get them–though I first had to go through the hurdle of seeing the goddamn neurologist when I already freaking know that what is wrong with me is mechanical. Grrrr. When I badly dislocated a knee, and knew I needed surgery on it, the orthopedic surgeon kept putting me off, telling me to just stay off my feet for a while. Not like he ordered me up a wheelchair, either, so how does that work for over a month? I finally took myself hostage, a la Cleavon Little in Blazing Saddles. When he started to give me the usual line, I stopped him and said “You said I’d be fine by now. So I must be fine. I guess I’ll start going back to practice martial arts and walking up hills. Because everything is just fine now, right?” This I said though I couldn’t bend my knee and it was still swollen. Amazingly, he scheduled the surgery to remove the broken bits of meniscus for the very next week. And he was, oh so surprised to find out that I had virtually no ACL left. And he had seen me reduce my jaw when my TMJ spontaneously dislocated (he was astonished), but he still couldn’t put 2 and 2 together.

Of course, a surgeon eager to cut is just as bad and often even worse.

There was the idiot doctor that convinced my 89 year old grandpa to get a new hip replacement. No, my previously healthy grandpa did not survive that. He probably had another 10 years in him if he had just used a cane instead of a getting a surgery.

And you know what happened to my grandma.

I suppose I could talk about the failed surgeries for uterine prolapse that my mom had, that ultimately resulted in a failed surgery for rectocele.

So, as far as I’m concerned, doctors aren’t worth seeing unless you already know what you need and can spell it out for them. And half the time, you are worse off for having consulted them in the first place. The worst thing would be to be in your position, Elizabeth, knowing something is wrong but not what to do about it, and thus having to be subjected to fumbling pin-the-tail-on-the-donkey testing month after month as things get worse. I’ve been in that situation, but I knew I wasn’t dying, so I could opt to stop. I’m angry on your behalf that you are being treated as lackadaisacally as I have come to expect, when they should be pulling out all the stops to find out if there is something that will stabilize your condition.

edited to provide context and to clean up typos