Demands Not Met, Not For Lack of Trying

I have an angry pug beside me. I am using the ungodly huge lapdesk made from… concrete and melamine, I think… possibly with some rebar thrown in as well… and thanks to the size of it and our couch, Penny can not climb right on my lap, or even get herself firmly implanted on my elbow, so she’s whacking the side of the desk with her paw. Angrily. Think of Judge Judy with a big gavel and some idiot with a small claims suit getting all uppity at her.

And Judge Penny just gave up. She’s now sulking beside my knee.

People ask what happens at vestibular therapy. Right now it’s still a lot of figuring out what makes me fall over most. If you’ll recall, while the vestibular tests showed left vestibular weakness, most of my complaints seemed based in the central nervous system or right sided — which confused the ENT folkses. Yeah, well, they sent the PT lady my reports, which stated left sided vestibular weakness… and maybe it is, who the hell knows how I’ve compensated or what the hell is going on… but the PT lady is basically seeing what I’ve been telling them, and it doesn’t appear to be necessarily what they saw on the tests.

But again, I think that compensating or overcompensating or whatever happens and no one notices (not even me) so that by the time any problems become apparent, it’s all so tangled sorting it out may not be possible. It might not ever have been, especially if there’s more than one reason and we’re all looking for one inclusive answer.

I think there is one reason, but it’s not a real technical one. Something broke along the way, somewhere. And then it rolls downhill.

Anyway, what I have been doing is half tandem standing with eyes open and closed. It’s sort of like the heel to toe test they give you for a DUI stop (or at the neurologist’s) but you don’t walk. You stand, hopefully. If you’re me, you don’t always. And so I have to do a half tandem, which isn’t quite heel to toe.  I’m better with my eyes open, and I am not good with them closed.  I guess I rely too much on my vision (which might be sending bad signals to my vestibular system) and so when I shut them, I tend to not necessarily keep track so well of where limbs and things are. I guess my depth perception totally sucks, hence stair difficulty.

I have a feeling there’s only going to be so much we can do there. I guess in my case the big thing is to grasp what the hell is going on behind the scenes so that at least I can work around it.

In any event, I keep being told that it’s a good thing to push myself and do stuff even if it means, as Dr. J said, Mr. Shoe has to learn how to do a fireman’s carry to get me home. As if I didn’t already know that… I mean, isn’t that why I go through the whole medical professional deal anyway? I have stuff I have to do. And maybe I’ll feel better.

Do I? Yes, shitloads! And by shitloads I mean not at all… Heh. No, I mean, I don’t know why I am suddenly all bitch on fire at the moment. I do feel better when I do stuff in one way because I made the effort. But I’ll make an effort to prove a point even if it kills me, and I’m pretty sure that’s not the spirit of the suggestion.

Case in point, yesterday was lovely here and Mr. Shoe had the day off because Massachusetts makes up reasons left and right to do these things. We packed up the camera and Penny and went to the park for a half hour. It was nice, and I am glad we did it. And I’m sorry we couldn’t do more than a half hour, but I sadly couldn’t get a full breath in and… actually, that was it mostly. Because I couldn’t get the air in right, I was also blue in a few odd places and felt at least a couple of extremities that were being non-cooperative. My fingers I tend not to worry about, since I can see them.  My toes have a tendency (especially on my left foot) to jab into each other and get sliced up easily. I don’t always feel it, but I’ve ruined a few pairs of socks and already have a decent slice on one toe so the idea of possibly making it worse via bad circulation was not appealing.

Do I feel physically worse long term for doing this stuff? No, if I am smart about it. Sometimes I am. Do I feel better for it? No, but for the fact that I know it’s probably still a good idea even if it doesn’t help much. Do I feel mentally better about it? It’s fun to get out, and that’s good. I can’t do it nearly as much as anyone (including myself) wishes or thinks I should and that is frustrating as hell — and that’s not good. Of course, the alternative is not to try, and that’s not really an alternative. That’s just stupid.

So you make your peace and move on, I suppose.

Now the lapdesk legs have been disengaged and my knee jutted out at an impossible angle so that her royal loveliness can rest her chin on it.

I love this little dog.
MAMA!

Also, I was careful to stay below this rocky outcrop.
Cliff

Anyway, chugging ever onwards. I have no idea how long they’ll try the vestibular rehab. I know that a month in they decide whether weekly or every other is fine… I might go to every other since I have been a good doobee about the exercises and the idea that I’m going to get leaps and bounds better is… not widely supported. Both the PT chick and I think there can be some progress though.

I am back to see Dr. J in early June for the full on pulmonary function test. Six minute walks, flights of stairs, and oxygen saturation measurement along with the regular old PFT stuff. My PFTs have always been good, but last year was not as good as the year before. Neither did a formal exertion/oxygen read. I hate the whole waiting for the shoe to drop (god, that’s ominous!) thing… But I know that’s about it right now.

Now I have to dry my knee off. Someone seems to have drooled all over it. Not me. At least, not this time.

This entry was posted in Langerhans Cell Histiocytosis, Living with, Photos, Hobbies and Worthwhile Stuff, The Bad, The Good. Bookmark the permalink.

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