This is probably either going to be short or somewhat incomplete, and definitely littered with typos. Posting via my Droid phone, which is not a comfortable way to type, but is sometimes just easier to get at than my laptop. (I upgraded to a generic Ubuntu 11.04. My feelings towards Unity are ambivalent, but my vitriol towards Firefox crashing and weird administrative things segfaulting grow. Also, I want Synaptic back. Jeez oh man.)
I still felt nasty as per usual on Thursday, as I kind of figured I would… but I also know that it probably won’t change and I do think the vestibular PT is helping a little, and I will so take what I can get. So I went, at least feeling less barfy, but feeling short of breath, turning lovely lacy blue colors, and with a burning in my lungs. I had tried antihistamines/decongestants, just in case… gave up after a week. Antihistamines were probably just bad news, decongestants confirmed I am just not… well, if allergies play a role in anything here, now, it is a small one.
So in I go, and the nice PT-rapist (oh, a new name!) says I shouldn’t be uncomfortable waiting the four weeks for the pulmonary tests if I feel like this. I said maybe, but I don’t think there’s much they can do in a shorter time frame. I told her about the ease of getting winded, griped about how I can do so putting socks on and still be told I am out of shape (and she said people get winded making the bed because that can be exertion to some people… and I must’ve looked at her oddly and said, “That’s what I am saying…”) I mentioned previously low oxygen saturation readings.
She said that we should do our half hour with the oximeter on my finger and see. Okay. My blood pressure was pretty damn good for me (actually just good… lately it hasn’t been less than 130 over 95, and it was nearly perfect Thursday. So yay.) My heart rate (always too fast) was between 90 and 105, so while not awesome, it wasn’t like it can be. My oxygen was 98 to 100 sitting there. My hands and feet and everything were freezing and I felt cruddy, but okay.
So we start… I do a sobriety test heel to toe walk (better at this and can do it reasonably well with eyes open). Oxygen looks great. Did a half tandem stand with eyes open and closed. Doing better with that. Oxygen dips, but not much. Standing there, talking to PT-rapist, another standing exercise and she says, “Sit down. Oh my god. Sit. Your oxygen saturation just dropped.”
And what scared me was I didn’t feel any worse than before. As I sat, it came back up from 84 to 98 in less than a minute. It had fluctuated in the 90s (which is fine and expected) during the balance stuff and then dropped off.
So the line changed from the idea that I shouldn’t have to be uncomfortable to the PT-rapist needing to tell someone to push it forward. My sweet GP is obvious choice, but with a test scheduled at Dana Farber and the not so easy access between my GP and the hospitals in town records wise, she’d just end up talking secondhand to Dr. J anyway. But legally, I suspect, someone had to know. So my sweet PT-rapist emails Dr. J.
I imagine I have drops like that and don’t realize. I also know it won’t do it on cue so I don’t know if the testing will make it happen. But I am glad she saw it, and let the doctors know. Because I probably do have to inch it up (like this hasn’t happened off and on for the past three years) but if I had done it without someone trained seeing it, and the test didn’t provoke it (it might not), I would feel like a jackass.
Will it be moved up? I dunno. I kinda don’t care. I mean, it is going to do what it will do, and with any luck some how we’ll catch it enough to piece it together. Probably not this time around all by itself.
So it was low enough that if it happens frequently they worry about cell death and brain damage and all that fun stuff. I can tell you that it probably does… but it is easy to blame equipment malfunctions. I obviously break more medical equipment just by standing near it. (It seems that Dana Farber – and ONLY at Dana Farber – I am unable to register a body temperature at all on the thermometers. I suspect it has to do with the sanitary covering materials and my usually kinda dry mouth though… It only seems to happen there.)
At any rate, it isn’t constant (good, except when it comes to spotting it). I was told maybe, priority wise, vestibular PT should be lower on the list. Pulmonary PT might help, she said, but would rather it be dealt with at a more well equipped for pulmonary PT facility. And it might be that it all hold till they see what the hell is going on.
So instead of a sheet of balance exercises, I got a sheet that instructs me (no lie) on how to breathe. It says “inhale deeply through nose, exhale slower than inhale rate.” Yay me! It is good I turn lacy purple too, sometimes it is how I realize the air’s not coming in right.
The balance person that is drawn on my exercise sheets looks like a bulkier, older Velma from Scooby Doo. The breathing guy on my sheet — the sweet (funny) PT-rapist apologized for his appearance. He looked like a cross between Crazy Eddie the neurologist and Chairman Mao. How do you illustrate breathing anyway? I mean, hello?
I don’t know, but at least if I have to call to move things up… at least I don’t feel like a whiner. No one at the Farber has ever made me feel that way, but y’know.
All right, enough of this thumb typing. At ease.