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Posted on 2014.11.30 at 16:15
Crowdfunding again. This time, it's personal.

A prominent sleep expert (she literally invented the type of sleep study I had this year) is doing research into the genetics of sleep. It's an important subject about which we know so little.

Obviously, it means a lot to me. I'd really like to see it funded.


Posted on 2014.11.24 at 14:30
Like climate science? And penguins? And mysteries involving extinct species of wolf? And encouraging women in STEM?

You can help fund a research expedition to the Falkland Islands.

10 days left for them to reach their goal, and it's an all or nothing campaign. There isn't much in the way of donation rewards, but you could get some very pretty penguin pictures, or even a calendar.

Posted on 2014.11.20 at 12:50
Kickstarter from one of my favorite authors. She's described the pitch as a sort of cross between Buffy the Vampire Slayer and Rosie the Riveter. WWII-era pinup girl discovers she has the power to redeem the souls of those who have been possessed by demons. But there's more to it than that, as she explains in her latest blog post.

If you're interested, The Redeemer Chronicles Kickstarter is here.

You can also read the first few chapters in PDF format.

Halfway through the campaign, and halfway funded. If it sounds intriguing, give it a look.

Posted on 2014.11.19 at 15:12
So Week 1 of Hetlioz was all about sleeping even more than usual while still feeling exhausted and woozy for most of the day.

The good news is that that stopped in Week 2. All of it. Literally overnight.

The bad news is that I haven't been able to sleep properly this week. Having more trouble falling asleep and staying asleep and getting quality rest. I haven't been woozy, but symptoms from lack of sleep are building up. I'm honestly not sure how I'm functioning as well as I am right now, and making up for the cumulative sleep debt is not going to be easy.

Who knows what Week 3 will bring.

It is kind of promising that Week 2's crippling side effects were so completely different from Week 1's. My body is adjusting, apparently. It's having an effect on my sleep and my sleeping patterns. If I can ride it out, it just might come to a net positive.

Then again, I'm gradually having more trouble falling asleep and finding myself falling asleep gradually later. I've gone from barely being able to stay awake until the 11pm set lights out time to being wide awake in bed at 11:30. Last night, I couldn't fall asleep until nearly midnight. This despite having slept poorly for most of the last week, and really feeling the need to make up for that.

Of course, I'm used to my sleep/wake cycle changing from week to week and I never thought holding it steady was going to be easy. It's possible that if I can ride it out, things will stabilize. But right now I'm feeling sleep deprivation setting in. It's hard to keep a thought in my head long enough to finish a sentence, and my whole brain is moving in slow motion. I've lost track, but I think I would have been nocturnal this week, which could well be why I'm having trouble sleeping at night. Maybe.

Doctor's appointment in two weeks. I'm halfway there. Just going to keep holding on as best I can. We can evaluate then.

Posted on 2014.11.12 at 19:41
A week on the Hetlioz now. Quick summary:

Good news: I'm actually falling asleep at 11pm every night. If anything, it's hard to stay up that late. That's pretty much unprecedented for me.

Bad news: I'm woozy for most of the day. Spending hours on the couch because my head is spinning so much it's hard to sit up. It's a little better now than when I first started, but it's far from good. And, in a way, so is being tired enough to fall asleep early even after sleeping 10.6 hours. I'm sleeping more like 10 hours a night than my usual 9, too. It's nice being on a steady schedule and all, but not if the price is being too tired and woozy to function.

Posted on 2014.11.06 at 14:46
Started the Hetlioz last night. Going to try to keep to a steady bedtime of 11pm for the next several weeks.

Slept 9.5 hours, AHI 1.1.

Really not feeling well this morning. Tired, woozy. Didn't get out of bed until it was past lunchtime, and then only because blood sugar became more urgent than how my head was feeling. (Still feels like my skull is trying to vibrate out of my head while spinning like a tornado.)

I'm hoping it's just an adjustment, or maybe even just a random bad day. We'll see. But it's not promising.

(Future sleep logs, if they're just sleep logs, will be kept private so as not to clutter your feeds.)

Posted on 2014.10.31 at 10:45
Mom: *series of questions about nothing that's actually important*
Me: I'm really not up to handling any of that right now.
Mom: Well, what about this other thing...?
Me: *groan, facepalm, shake head, otherwise indicate I'm really really not feeling well*

Half an hour later:

Mom: I've been trying not to bother you with this, but I just can't figure it out. Can you fix the clock on my iPad? It's been stuck in the wrong time zone for days.
Me: *drop everything I'm doing, grumble, poke, apply software update*

5 minutes later:

Mom: What are your plans for the day?
Me: Couch.
Mom: What about fun? Don't you want to do anything? How about we make a banana bread? Or...

I really don't get it. I'm bleary as hell. My brain keeps trying to crash. (No, I don't know why. I had 11 hours of sleep yesterday and almost my usual 9 last night. I've just been feeling exhausted for at least the last week. Today is, so far, significantly worse. These things happen.) Mom has dealt with (and watched me trying to deal with and accompanied me to dozens of specialists trying to help me deal with) my sleeping disorders and the problems they cause for decades. How in the name of His Noodliness does she not get the message? It's not hard. "I'm too tired to deal with anything, including normal conversation. Go away."

A year or so ago, I almost had her trained to at least ask if I'm up to conversation before monologing at me with an overwhelming flood of words, but then she went to go visit her uncle on the other side of the country and all the progress I'd made vanished. I'm at a loss here.

Screw it. I'm hitting the couch.

Posted on 2014.10.30 at 10:16
Going to be trying the new sleep med starting early next week. I'll be using my journal to keep a sleep log. I presume none of you is interested in following the day-to-day log of how I slept and how I'm feeling? (A more general post about how it's actually working will be separate.) I'll make it private so as not to spam your feeds, but I can make a filter if any of you is actually interested.

Cultural Icon

Redesigning the space sick bag

Posted on 2014.10.25 at 05:10
I was at a talk by Col. Chris Hadfield when he mentioned a problem with space sick bags. He said that when you use a space sick bag, without the force of gravity to hold what's come up down, it has a tendency to bounce off the bottom of the bag and float back to the top. Not ideal.

I was thinking about that while trying to get back to sleep last night, and I realized that the solution might be to redesign the shape of the bag. If you were to indent the bottom of the bag (with, say, a v-shape), anything bouncing off it would be reflected not directly back at you but off to the side.

Of course, it could still ricochet off the side of the bag and come back to you. To discourage that, you'd want to taper the sides in. Make the bag more triangular.

Doing that, however, still has its disadvantages. Without gravity, up and down are arbitrary. A bag which tapers out from the top, considered upside-down, is a funnel. To prevent that, you'd want a shoulder at the top. Or, better yet, a tube going partway in. (You need a valve to close it off anyway, right? If you make that tube a little longer, you're fine.)

But then... a triangle with a notch cut out of the bottom seems familiar. And, come to think, having that notch be asymmetrical could have some advantages. And, really, why not have fun with it if you can?

I present to you what, to the best of my late-night figurings, is honestly the ideal shape for a space sick bag:

The Starfleet logo.

It'd cost a little more to manufacture, but it just might be worth it.

(I sent a copy of this, without the crude diagrams, to NASA. It'll be a couple of weeks before they can reply, but I'm interested to hear what they make of it.)

Posted on 2014.10.24 at 13:48
For all you knitters out there...

Fabulous Hooker shirt/hoodie. It only gets made if they get 50 orders within the next 5 days. I've chatted with at least one friend who would really enjoy it, and I think maybe some of you would, too?

(Image description: Hoodie printed with the phrase "I am a fabulous hooker" with a picture of a knitting hook stuck through a ball of yarn.)

Posted on 2014.10.24 at 03:47
Got my new sleep medication in the mail on Wed. Only took, what, 5 months?

It came just as I was about to go to sleep for the day. (I was in bed, but alone in the house. The dog heard someone at the door and barked. So I went down, got it, and put it away.) Opened the box the next day. The box was big enough to fit a couple dozen paperbacks. Inside were some instructions and paperwork. And a brochure with no text. Open it up, and a friendly man and woman take turns reading you the information. (Remember, almost all the patients who take this stuff are totally blind.) Oh, and one little pill bottle. Filling up the rest of the relatively cavernous box was a big sheet of oversized bubble wrap.

I read the printed instructions from the pharmacy. (They'd asked before mailing if I needed them in any special format - audio or braille or whatever.) On the sheet and again on the bottle, it said the medication must be stored at 77 F (25 C), but that it can be stored "briefly" at temperatures from 59 - 86 F (15 - 30 C). Also, it must be kept away from moisture. And light. Wow, this stuff is sensitive! Good thing I brought it in from the front stoop; it's been pretty rainy. But, oh no! It was overnight downstairs, where the temperature was well below 77! (Was I going to need to buy an incubator for the one little pill bottle?)

I called the manufacturer's hotline. "Oh, that. That just means you need to keep it at room temperature. Don't put it in the fridge or near any heat sources, and you should be fine."


But also... huh? If that's what you mean, then put that on the label. What's with the scary specificity?

Then again, among the safe places to store it that she listed was "medicine cabinet." The instructions also clearly say not to keep it in the bathroom. (Most likely because of moisture.) I think I'll call back today, see if I can check with someone else...

Anyway, I've got an appointment with the sleep doctor next week to let her know I have the stuff and go over instructions. By then, my sleep schedule should be coming around towards normal. I'm going to have to hold my sleep schedule steady for weeks or more to give this stuff a fair try. (The friendly people in the brochure told me that it can, for some people, take weeks or even months before the stuff has any noticeable effect.) We'll see how it goes. But this could get rough. And exhausting.

Posted on 2014.09.02 at 22:36
September, as best I can figure it:

Wed 3: Wake up in the evening. Drive all night.
Thu 4: Check into the hotel in the morning. Go to bed. Wake up a few hours early (maybe 4pm). Attend the funeral. Give the widow whatever support and company I can after. Spend the night (my daytime) in the hotel room.
Fri 5: Go to bed in the morning. Sleep late. Check out in the evening. Drive all night.
Sat 6: Arrive home in the morning. Try to stay awake for the day.
Sun, Mon, Tue: Adjust sleep schedule. Sleep. Rest.
Tue 9: Anna arrives 9pm. (May need to send parents to pick her up.)
Wed 10 - Fri 19: Tour around with Anna.
Sat - Thu: Rest. Maybe take care of some doctors' appointments.
Thu - Fri: Jewish New Year
Sat 27: Fly to Vancouver for 2 weeks. Visit with friends. Be in charge of the VCON registration desk.

Posted on 2014.08.31 at 23:37
Wrote this a few weeks ago, after I finally gave up on getting any sleep on the plane whatsoever:

Light is amazing. It moves as fast as it is physically possible to go. And it moves across impossible distances.

Somewhere, 10,000 light years away, a star burned. It sent out light in all directions. Some small portion of that light traveled, not in our direction, but towards where we would be 10,000 years later as the Earth sped and spun through the vastness of space.

It went between stars. Past planets and moons and comets and asteroids and more.

It came to Earth. It headed right for you. But it was daytime, and you didn't notice. You couldn't sort it out from all the much younger light around you.

Still it came. This time at night. But it was a cloudy night, and so it was blocked.

Still it came. On a clear night now. But you were in the city, surrounded by street lights and house lights and car lights. So you didn't notice.

Still it came. But you were indoors, and the light couldn't make it through the wall.

Still it came. You were outside on a clear night, far from the lights of civilization. But your eyes were closed. Or you were looking in the wrong direction. And so you didn't see.

Still it came, but it was in the frequency we call ultraviolet, and so you could not detect it.

Still it came. And this time, everything was right. It had come so far. Not a million miles; it could do that in a matter of seconds. Not billion miles; it could do that in under a day. It had been going that fast for 10,000 years. Since before the dawn of human civilization.

A photon came all that way, and it crashed into a single electron in the back of your eye. And that electron gained the tiniest jump in energy. And that jump got turned into a signal.

At the same time, another photon, this one from 5,000 light years away, hit a different electron in your eye.

And another from 15,000 light years away.

And more from incredible distances apart, all converging on your eye, where they are absorbed. In a way, gone. Their journey over.

But the signals from all those absorptions combine in your brain, and you can see it. The Milky Way.

You look at it in wonder and see its beauty.

And then you blink, and the light bounces off your eyelid. And then you go inside to sleep.

And somewhere in your body is a tiny bit of energy from a star 10,000 light years away.

Posted on 2014.08.31 at 22:46
I should probably post something here. It's been a long time. It's just been a crazy summer and I haven't had much chance to catch my breath, let alone organize my thoughts. I've been neglecting all my social media.

The last month or two of my life...Collapse )

Posted on 2014.07.09 at 13:15
In the week since I ran out of Xyrem, I've been sleeping a lot and feeling particularly exhausted. Not as bad as February, but well below par.

It's the middle of the night for me now. Slept about 3 hours. Woke up from a dream where I finally lost it and got seriously pissed off with the relative who has been living with us for the last several years. Not sure why, since he's been away for the last week or so. But maybe it wasn't really about him and he was just a convenient symbol. Anyway, I woke up from that because of the apnea, and now I can't get back to sleep.

I go through periods where I feel relatively okay. Tired, but functional. And then I just feel really tired, but push on. And then there are times where it feels like my mind is starting to crack (again).

I wish I could figure it out. Is this because of the Xyrem? If so, is it because the Xyrem was helping, and now I'm crashing because I don't have it? Is it because I'm going through withdrawal? Or is it the opposite? Did the Xyrem screw me up for a month, and I'm so tired now because I'm recovering from the damage it did? Or is it something else entirely?

It should be getting better, but I don't know. And it's hard to think.

Posted on 2014.07.06 at 21:18
Slept 10 - 11 hours a night since I've been off the Xyrem. Plus the 12 hours to make up for waking up to see the sleep doc. Still flat out exhausted. I don't know if this is (supposedly nonexistent) Xyrem withdrawal, if I'm recovering from being on Xyrem (because it was somehow making things worse), or what.

Posted on 2014.07.03 at 16:56

On the one hand:

Man of Steel was an awful movie that was in no way about Superman and went out of its way to chuck all prior Superman continuity from any medium and any resemblance to a comic book movie.

Ben Afleck is attempting to play Batman. I must admit that he did a good job with a terrible script in DareDevil, but still...

The title "Batman Vs. Superman" is... let's just say "not promising."

On the other hand:

The movie will be Wonder Woman's first feature film appearance. Second, if you count the Lego Movie. (Yeah, take a second to absorb that.)

Given that... do I see the movie or not?

In other news: I slept 12 hours to make up for not sleeping yesterday (because I had to go see the sleep doctor). Took me two hours to get out of bed, and I'm still too tired to think.

Posted on 2014.07.02 at 12:58
Good news: New restaurant site is looking very promising. Negotiations have not formally opened, but I'm optimistic.

Medium news: Saw the sleep doc. She's going to look into getting me medications. But it might take a while.

Bad news: In order to see the sleep doc, I had to wake up at 10. I'm semi-nocturnal now, so I didn't get to sleep until 6. And my blood sugar was high, so I did not sleep well. Also, it's hot and humid today. So, basically, I feel like total crap. And it's supposed to be raining for the next few days, so the humidity isn't going away any time soon. Just have to wait it out and try to rest up as best I can.

Posted on 2014.06.30 at 20:37
Not having a good day today. Don't know why, but I'm just tired, woozy, and in pain. Yay.

Also, I'm almost out of Xyrem. They were supposed to have called me today about their discount program, since insurance denied it. Seeing the doc on Wednesday. I'll see what she's come up with. We may decide to give up on Xyrem for now and try the other medication (for the non-24 thing), since the two apparently may conflict. I'll see what she has to say. (Unfortunately, I'm semi-nocturnal right now and she only has morning appointments. So I'm going to have to miss half a day's sleep. Ironic, no?)

I wish I could tell if the Xyrem was really helping me, but the trips I've taken have disrupted my sleep enough that I just can't be sure. Would I be even more tired right now if not for the medication? Or has it had no appreciable effect? Maybe I should see if I can get another sleep study done.

Side note: I'd filter these entries so as not to clutter your feeds, but one of the few people who actually does still read my journal is using RSS. And I figure I'm posting at most once a day, so it can't be that bad, right?

In other news: The deal to buy out the guy's restaurant lease fell through. We're looking at other locations again, and I'm stuck with the legal fees and everything else. I guess that's the way it goes. But we've got a line on a promising space. I'm excited about it. Rent is higher than I'd like, and it's currently a white box so I'm going to have a lot of build costs and inspections and whatnot. But it's a good location and a nice space and I'd rather put the money towards buying the equipment I actually want than give it to someone else to buy out his lease.

Sleep log for the last few daysCollapse )

Posted on 2014.06.25 at 16:34
Home. Finally. Good to be back in my own bed. Slept a lot last night. I needed it. What a year this is. Months of being too sick to do anything. Just as I get better, I drop everything to visit a friend (who thankfully is back home and seemingly doing well so far). Get half a night's sleep before flying out with the family to Colorado, but too tired to do much while out there. Did get a couple of good days at Rocky Mountain National Park, though. (Also, a sunburn.)

Got home to find that even though I'd given my cell number multiple times and specifically said I was away from home and not to call there and called back to tell them I still needed help... there was a message at home from a tech who mumbled something in a thick accent, left a callback number, and never bothered to check back or try the cell number.

Trying to catch up on sleep now. Kind of spacy from that.

In a few weeks, we leave for the annual family trip to MA. But I fly out from there to the meetup in London, then fly back to MA to be with the family. Not sure what's going on in September. Might have a friend come visit from Greece. Might drive out to see the friend again (who hopefully will still be out of the hospital and doing reasonably well). October, I fly out to Vancouver, where I'll be the registrar for VCON. No idea what happens after that. I can't remember when I've bounced around so much.

Sleep logCollapse )

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