What a full and fine weekend! Saturday morning I had dim sum with plumtreeblossom and a bunch of her friends and mine (and in the process discovered that we have some friends in common I didn’t know about!). Dim sum was yummy as always, and I was ravenous when I got there, so I stuffed myself.

(I’d been running just a little bit late, so decided to take the car to the Quincy Center T station rather than walking. What I didn’t realize was that Quincy’s Veteran’s Day parade was about to start — I had no fewer than three intersections close just as I was about to go through them, had similar trouble getting back home (since some of the streets I’d come through were now blocked off), and ended up dropping my car off in a parking lot I could get to and walking. So I was sadly more than half an hour late, but fortunately that just meant there was lots of yummy stuff already on the table when I got there.)

Then the lovely (x3) minerva42, underwatercolor, plumtreeblossom, and I went to the Museum of Science, intending to see the Body Worlds 2 exhibit. Unfortunately when we got there we found out that the earliest entrance time that still had tickets available was 5:30 (6:00 by the time we’d finished talking about it), and minerva42 and underwatercolor had evening plans and hadn’t planned on spending that much time in the museum. So we all got exhibit hall tickets, and plumtreeblossom and I got tickets to a movie and to Body Worlds 2 as well.

The regular exhibits were fun, but not particularly new to any of us. (The electricity show, with the huge Van de Graaff generator, suffered from a presenter who could give Mumbles a run for his money.) Definitely fun, though, and we got to see tamarins! Yay monkeys!

Then we said goodbye to minerva42 and underwatercolor, and plumtreeblossom and I saw the ( 3D Mars movie ).

And finally, we got to go to the Body Worlds exhibit, which was amazing and somewhat awe-inspiring. ( Body Worlds 2 exhibit )

I could go on and on for ages about this exhibit (feel free to ask questions, or browse through the exhibit catalogue if you’re over at my house), but I’m running out of LJ-posting steam, so I’ll stop babbling now. (I definitely want to go back while it’s still in Boston, more than once if possible.)

plumtreeblossom and I then took the T to Quincy, where we both slept very well. I dropped her off at home, since she had a busy Sunday planned. [EDIT: Oh, I forgot to mention introducing plumtreeblossom to Sarsfield’s, an Irish pub in Quincy. We had a couple of yummy pints, but I like going there on weeknights better — it was extremely crowded.]

I had a busy Sunday planned, too, but so far I don’t seem to have actually gotten to any of it. :-)

First of all, let me just say that Peking Kitchen’s Peking ravioli are so good! And the weather is gorgeous today.

So, I’ve been using the CPAP machine for a couple weeks now, and I wanted to let you, O loyal reader, know how it was going.

Basically, awesome.

I’m still getting used to the mask(s), and I still have problems (of varying degrees) with dryness, but the change in my energy level and my ability to get things done is quite significant. A few days back over dinner cathijosephine and docorion were commenting on my energy level and my improved (i.e., extant) short-term memory. What strikes me is the little things I’m starting to get done — simple, trivial things like calling to find out how to get a replacement recycling bin, or throwing out some of the unimportant bulk mail out of the stacks that have been piling up on my desk, that never managed to become urgent enough to actually get done before.

Most of you probably don’t realize how impaired I’ve been over the last few years, since my friends and family have always been my highest priority and I’m generally at my most energetic around other people, but I have been, and it’s really, really good to start to feel like myself again.

The difference was made even more apparent on Friday. Thursday night I wore the nose-only mask (which so far seems probably to be the most effective one most of the time), but I got really stuffy in the middle of the night, so at about 5:00am I took it off and slept without it for the rest of the night. (Yes, Don, I know that’s the hour when a civilized person wakes up anyway; just humour me here. :-) And on Friday, while I still felt pretty energetic and alert, I was physically clumsy in the way I’ve been for the last n years — tripping on a curb on my way to the T station, not quite managing a straight line down the corridor at work — and I didn’t have as much of the new crispness of thought that I’ve been delighting in since starting on the CPAP. Fascinating.

(Last night I had no trouble using the CPAP, and today everything is crisp and bright and energetic and I know where the ends of my limbs are again.)

So all in all, I’m really excited and pleased.

Good news — I get my CPAP machine on Monday. And I don’t even have to miss much work for it.

I’m getting this one, and paying a bit extra out-of-pocket for a battery attachment so I can take it camping. I’m glad I did some homework, because I told the supplier about a mask I want to try (in addition to the more standard ones) and he didn’t know about it but is going to order it for me.

In less pleasant news, I scheduled a couple of EEGs (more elaborate than the ones during the sleep study), and they’re both going to be extremely icky. One requires me to stay up all night the night before. The other one requires me to have my head entirely wrapped in gauze and go home (that’ll be fun on the T; I just hope Homeland Security doesn’t decide I’m a terrus and take me out) and stay plugged into an electrical outlet for 24 hours while a monitoring device collects data. That’s because my sleep specialist noticed something odd in my EEG during the sleep study ("flowing", she called it) and wants to check it out and make sure it’s nothing to worry about.

Two good pieces of news:

(1) I just spoke to my mother in the hospital and she’s doing a lot better. I could tell the improvement the instant she said “hello”. She finishes her course of IV antibiotics on Wednesday, and expects to be able to go home then.

(2) I got a call this afternoon from my sleep specialist. She’s ordering the CPAP machine for me; evidently the company will bring it to my house. Dunno when that’s happening, but a lot sooner than December. (And she described my sleep apnea as “moderate to severe”; eventually I stop breathing almost twice a minute, but my blood-oxygen levels don’t dip all that much (although they do dip). So! Treatment soon!

(I’ve stopped in at work on my way home from the sleep center, and I don’t have an easy way to get pictures off my phone here, so the pictures of me with electrodes all over my head will have to wait, alas.)

So it was a split sleep study, which means the first part of the night they get baseline data (actually somewhat worse than baseline, because they ask you to sleep on your back if possible, which makes apnea worse, but at home I sleep on my side), and then they put the CPAP machine on you and you sleep with it for the rest of the night.

My sleep was interrupted, of course. For the first part (without the CPAP machine) I remember waking up once from snoring, and once from feeling unable to breathe, which probably means I was exhibiting worse symptoms than I do at home — usually I remember waking up due to snoring or breathing problems maybe once a week (although I’m sure I do it more often than that). I did sleep quite a bit, though.

For the second part, with the CPAP machine, it took me quite a while to fall asleep, but when I did I slept quite well. I did wake up a few times for adjustments to the mask, and a couple times to get unhooked so I could use the bathroom. I noticed an odd sensation in my ears at the beginning — kind of an itchy-ticklish sensation deep in the ears — but it went away after a while. I had mild but sharp-feeling pain under one eye, which might have been something about how the mask was adjusted or might have been something about pressure differentials, but that also went away after a while. After the last time the mask was adjusted, it was too tight (because the technologist adjusted it for one position and I promptly rolled over into a different one, I think) so when I woke up my face hurt. And the mattress was much firmer than I am used to.

Despite all that, and despite waking up at 5:30 when I’ve been barely managing to get out of bed by 8:30 lately, I woke up feeling rested and refreshed and full of energy. I feel better than I do when I sleep till noon on a lazy weekend after getting to bed early the night before. I feel at least as good as and perhaps better than I do when I go on vacation and get ten hours’ sleep a night for four or five days in a row.

I don’t know, maybe some of this is placebo effect. But I’m pretty sure not all of it is. I feel great!

The sad thing is that I may well have to wait a few months before I can feel this way again, although I will certainly be harrassing the sleep center to see if they can get me in for a followup sooner than December 8 — maybe there’ll be a cancellation. Or maybe I’ll just hold up a 24-hour CPAP-machine store somewhere. :-)

Wow.

First of all, my mother does not have a blood clot. She does have pneumonia, and might have something else on top of that, but the scariest thing has been ruled out. Still in the hospital, but doing generally OK, for someone who’s in the hospital with pneumonia.

Secondly, my sleep-specialist appointment today went very well. Both the resident (?) who spent most of the time with me and the attending were very, very friendly, helpful, and informative. And the resident said that what sent me to the ER a couple weeks ago was almost certainly hyperventilation, which is a word I wish I’d heard from the staff who saw me (not docorion, in case anybody was wondering). I was aware of having trouble breathing that morning, so I was making a conscious effort to get enough air, so that makes perfect sense.

Anyway, they say that it’s pretty much guaranteed that I have obstructive sleep apnea.

The sleep center had an appointment available tonight for a sleep study, so I get to sleep with the fishes electrodes tonight. Given how bad my apnea is, the specialist I saw today said they’d probably be able to determine I had it quickly, and fit me for a CPAP machine tonight as well. Then my appointment for a follow-up isn’t until December (unless there’s a cancellation earlier), and I’m guessing that would be when I’d actually get one.

They told me that my energy level should come back right away with treatment, but the memory, learing [EDIT: and speling and typeing], cognition, and attention problems will probably take something like six months to go away, because that’s basically brain damage that has to heal once I start getting enough oxygen at night. Six months or so to get better from something that’s been getting worse over at least the better part of a decade doesn’t sound so bad, but it can’t start soon enough for me.

Had a lovely date with plumtreeblossom tonight; she fed me yummy chicken and pasta with pesto and garlic bread and there was much snuggly goodness.

On my way to the T from her place, I discovered I had voicemail from my stepfather. Turns out my mother went into the hospital today. She’d been ill for quite a while and (like me) trying to deal with getting a new PCP. Today she finally got to see somebody and he promptly admitted her with “dyspnea and tachycardia. After a chest X-ray, they decided that she might have pneumonia or pleurisy. She’s doing much better since she’s been in the hospital. I’m going to try calling her tomorrow during the day.

(Speaking of doctors, I might have a consultation with a sleep specialist as early as Friday, depending whether the insurance referral paperwork can get processed in time. I hope so, because the next appointment available after that is mid-October.)

Well, my appointment with my new doctor went almost exactly as I expected to; he said “Yup, sure sounds like obstructive sleep apnea could explain all of this; here’s a referral”, and tomorrow I get to call and schedule that. (I forgot to ask if he knew what the wait was likely to be like, but I’ll know tomorrow in any case.) He is entertaining and has a sense of humour and comes off as a Real Person rather than a Doctor Declaiming from On High, and he typed notes into his laptop as he talked with me. I like him.

He did confirm my sense that my oral pharynx looks unusually crowded.

Oh, I also took the opportunity to get my every-so-oftenly STD screening; go me!

[No, this is not filtered. This is the sort of thing I think it’s useful to be open about.]

So as I alluded to earlier, but haven’t talked about in a lot of detail, I’ve been concerned for a while about constant exhaustion, memory and attention problems, and various other concerns. Lately I can add breathing problems (both at night and, more recently, sometimes during the day). A lot of it looks very much like sleep apnea although there are some things that seem inconsistent with that. I talked to my (then-) doctor about that a couple years ago and at the time she was pretty sure I didn’t have sleep apnea, but since then the symptoms have gotten a lot worse. My daily exhaustion is greater and more consistent. It feels a lot like being jet-lagged: I’m outside and it’s a bright and sunny afternoon, but I feel like it’s 3:00am and I should be asleep and in bed and it should be dark. When I came home from work this afternoon (early, since I wasn’t really functional), I opened the door carefully so the cat wouldn’t get out. It’s been a long time since I lived in a house with a cat. Yesterday I got off the T a couple stops early on my way to work. It wasn’t that I thought I was at my stop yet, it was just that the train stopped at the station and that bit of my autopilot that controls what you do when the train stops kicked in before I bothered to think whether this was where I wanted to get off. I’m only 40 (well, 39 for another couple days). I’m not due for this yet.

So I’m really glad that I finally found a doctor who was seeing patients, got things straightened out with the insurance company so I can go see him, and made an appointment for September 12. I really hope this is easily treatable, whatever it is. (If not, cathijosephine, you may get your chance to feed me my strained peaches during visiting hours at the nursing home sooner than planned. :-)

All of this is on my mind because I just finished writing up my medical history and an overview of my current complaints to send to my new doctor. (I haven’t sent it yet because I want to run the family-medical-history stuff by my mother first.) I don’t angst about this all the time. :-)

All of that said, my life is pretty wonderful. I have lots and lots of good friends, a new lover, some other people who don’t seem to mind smooching me now and then, a good relationship with my fabulous ex, a good albeit long-distance relationship with my other fabulous ex, and a house I love in a town I love and whose mortgage I can even (albeit just barely) afford. And it was a sunny day today.

I have some stuff I’m frightened about, but in many ways I am blessed.

PS — Lest any of you worry that I’m going to keel over tomorrow, these issues have been going on (and slowly getting worse) for years. I’m sure looking forward to my appointment, but this isn’t an acute, sudden thing.

Everyone should go read docorion’s first-aid tips. I bet there’s something important there that will surprise you. (I love living with a doctor.)