Wednesday, October 03, 2007

by rights

Sometimes, Life appears to be little more than an accumulation of insults, many small incidents piling up, one after another, resulting in general malaise.

And sometimes, the incidents are not so small; today I'm feeling the brunt of them all, and the tiny things have much more force than they should. The not-small events: someone died, not close to me, but close to someone I am close to; the continuing saga of the floor, along with the unfinished house; DS1's trip to the neurologist, where terms like limb girdle weakness were mentioned.

We doubt that DS1 has LGMD -- for one thing, he always improves with practice, and LGMD is a progressive disease -- but at this point we don't doubt that there is something going on. Then comes the second-guessing and wondering why we didn't do anything about this earlier, but also the recognition that DS1's capabilities qualify as "normal," which represents a range, after all. He has been evaluated by three different pediatricians and not one ever recommended him to an orthopedist or a neurologist; that was all my idea after hearing about a friend's experience with her son. But DS1 is not like her son, who just needed orthotics for his completely flat feet. When DS1 is thinking about what he's doing, he can do just about anything, and do it well. When he's not thinking, he can barely get himself out of a chair. It's as if he needs his conscious brain to control his muscles properly.

Part of the meeting with the neurologist today was taking a detailed family history, and I denied having any muscular or skeletal problems other than the RA and the fibromyalgia, and oh yes that business with my hip and my piriformis and my tailbone, and back in 2003, the uterine prolapse. So you do have muscles problems, the neuro said.

I never thought of it that way. In fact I never associated any of these things with the others; when you string them all together, suddenly they're a cluster of symptoms. The neuro wonders if I in fact do have fibromyalgia, or if I have some muscle/neuro thing going on. I've been rejecting the very idea of "find the one thing that's wrong with me and fix it" for so long that I have to try very hard not to scoff at the idea that I really may have something wrong that led to all these other issues.

And of course I have to face up to the possibility that my son has inherited his condition from me (DH may be partly responsible, too, but since he has zero health problems and his family, likewise, I think I know where to point the finger.)

So there's that, and the fact that I'm feeling stupid about my writing again. What am I doing and why am I doing it are two questions I can't answer well, right now, and that makes everything seem like a struggle.

I think it's reasonable for me to feel 1) disturbed and 2) sad about all these things going on. I try to be careful about distinguishing justifiable sadness from depression -- so far I'm not having trouble getting out of bed or getting stuff done, I just feel sad.

Like Nina today, I wonder: why am I not a duck?

1 comment:

Papercollector said...

my dear sister, i honestly feel for you right when mikey was a baby the drs checked him for lymphoma for a year... as when dianna was an infant they thought her vagina and anus were malformed ---as with the troubled som i took him to the drs and they said he was normal...and the list goes on and on.... i can give no advice because my experience is that parents know their children better than any dr or anyone else...i love you so..please have faith and do not let all this get you down or upset the have been through sooo much and you are just a wonderful family.