Posted on 2015.04.28 at 17:48
The pollen this year is killing me. At least, I think and hope it's the pollen. Even staying entirely indoors with all the windows shut and the air filters on and everything, it's hard to sit up, let alone keep a train of thought going. Which is not good because we're trying to get all the paperwork in order to set up a lease deal. Not a good time for me to be out of commission. It also means I'll be missing a rare chance to meet cesy
and possibly some others.
Posted on 2015.04.20 at 11:50
Summary of most of the last 18 months:
They adjusted my meds for one reason or another. It went badly. We undid the change, I got better. Just in time to try something new. Which went badly. Rinse and repeat.
Latest change is an increase in my Lyrica (the one thing that's been any help with my sleep or the fibro pain). I didn't feel anything for the first day or two, but then spent most of Saturday too lightheaded to do much of anything. Yesterday, I still wasn't feeling right, but better than before. Sleeping more than usual, but that could be a sign that the Lyrica is helping me sleep more deeply. I hope that's it.
At least I was well enough to make it to my cousin's wedding. Which is good in that everyone was glad to see me and the bride was very grateful I could make it and I got to spend a little time with my nieces and nephews.
Only problem is that the band had their amps turned up to 11. My phone's (somewhat unreliable) sound meter app tells me they clocked in at 85 decibels, which is on the edge of what can cause permanent hearing damage
. (I suspect the band has long since gone half deaf from doing this every weekend.) Fortunately, I carry a bag of earplugs with me wherever I go (hypersensitive ears, thanks to the fibro). Which is still not as well-prepared as my uncle was. He brought two pairs of high-end noise-dampening ear cup protectors. Wish I'd thought to bring mine.
Managed to have a good time, though.
Still waking up today. Kind of fuzzy-headed. But better than this time yesterday. I think my body is adjusting to the increased dosage. Then we'll get to see if there's any benefit to it. That would be a nice change.
Posted on 2015.03.18 at 12:20
For the record, I'm still here and still reading. Life since January last year has mostly consisted of me not sleeping and/or dealing with side effects. (With the notable exception of a thrilling but exhausting August.) Stuff has been happening around me, but I've pretty much been too bleary to do much about it.
Good things are on the horizon, but I don't want to jinx anything before it's actually in black and white. I'll try to update more when I'm feeling better and actually have something solid to say.
Posted on 2015.02.15 at 12:07
My niece needed to do a presentation for school dressed as 16th century Portuguese explorer Vasco Da Gama, pictured below:( Vasco Da GamaCollapse )
Sis emailed me to ask if I had an appropriate hat, but the closest thing I could find was my pumpkin beret, which is roughly the right shape, but entirely the wrong colors and also adult sized. But I had some black fabric from a previous project lying around. I went to the craft store, picked up a few things, looked up hat sizes online, and got to sewing. I used the pumpkin as a model, but sized everything to roughly 90% of the adult measurements.( Finished hatCollapse )
It came out a little smaller than I'd intended, but it fit. Niece was thrilled. Said it looked "perfect" and "awesome." Also she said she loved the pompom on top, and it looked "so pompomy." This is the girl who, at 9 years old, already makes her own (very stylish and professional-looking) pocketbooks and dresses using her sewing machine, and will happily strut like a model to show them off.
I spent two days making that. (Would have gone a lot faster if I hadn't done it by hand, but I didn't want to use Mom's antique sewing machine without her.) It was worth it, no question. Niece absolutely loves it. (My other niece was impressed and told me I was making her Halloween costume. I said sure and asked what she wanted. She said she usually decides the day before...) I finished it as a rush job, putting the last few seams together on the train into the city. I was still working on the last touch when she arrived at my sister's apartment. It was a crazy thing to do, but it was fun. One might almost say I'm mad as a hatter...
Posted on 2015.01.21 at 20:17
Been off the Hetlioz for a week now.
It has been a week of living Hell.
I've hardly been able to move. I feel more dead than alive. I'm too lightheaded and woozy to think. Or do much of anything. I saw my GP yesterday. He was really impressed with how absolutely fucked up I was. Nearly passed out in the chair as he was ordering my prescriptions. Almost couldn't get off the exam table by myself. Nearly collapsed while the secretary got the bill ready. (I stumbled over to a chair and let Dad take care of it.)
I can't tell if I'm getting any better because my memory is shot, too. The whole week is less than a blur.
I keep thinking of things like Batman getting his ass kicked by Bane. Batman is dead on his feet, having utterly exhausted himself. And Bane just beats the [preferred euphemism here] out of him. "I wonder which will break first - your body or your spirit?" That's how I feel.
I'm too tired to live.
Just surviving hour by hour, sometimes minute by minute, in the faint hope that this will get better and I can go back to merely feeling sick and tired. I don't know how much longer I can keep this up.
Posted on 2015.01.18 at 15:29
1. I posted to the therapy dog page to let them know about Henry. Got a lot of sympathy (which I appreciated, but was still hard to handle).
1a. Apparently, the meme there is that dogs go over the Rainbow Bridge. They have a picture of a whole bunch of dogs on a grassy field at the end of a rainbow, captioned "The Rainbow Bridge Greeting Committee." Which is kind of cool, but... Valhalla is for great warriors who died in battle, who are collected to be an army of the dead to fight in the last battle. They spend their days hacking each other apart in glorious battle, and their nights partying. That's... not Henry.
1b. I got a sympathy card in the mail yesterday with his name and picture on the front. It was sweet and unexpected, but got me choked up again. Tearing up a bit now. He was a good friend.
2. Had my appointment with the sleep doctor on Wednesday. I told her the schedule wasn't sustainable and not worth the price. I'm now off the Hetlioz and back on a free-running schedule. She's looking into other medications and gave me a referral to another specialist.
2a. Getting off the Hetlioz felt like hitting the finish line on a marathon. I just collapsed. Slept 11 hours the first night, and have been deep in recovery mode since. I'm far more worn out than I'd realized. Yesterday, I had breakfast over an hour later than I should because I was too tired to even lift my head off the pillow.
2b. (Or not.) This means I'm even more hypersensitive than usual, my brain is such a soggy mess I can't even think of an analogy that accurately conveys how hard it is to think, and my emotions are raw and mercurial. It's the "I want to grab something by the throat and punch it in the face for no reason, but I'm too tired to move" phase of exhaustion/recovery. Yay.
3. Naturally, as I'm dealing with all of the above, a possible real estate location shows up, and I'm being rushed along faster and five steps ahead of where I can think by someone who keeps missing or talking past the main point of whatever in trying to say at the time. I'm not sure whether to be afraid, pissed off, resentful, or cautiously optimistic.
3a. It's taken far too long to find a space. We've had too many deals fall through. I want to get started already. But I'm not sure about the place, and I'm in no condition to handle any of it.
3b. But it seems like the second I say "Okay, maybe we can take half a step forward. I'm not even barely functional, but I want to at least keep the option open" I get hit with a long list of things that need to be done ASAP so we can charge ahead.
4. Time to get moving so I can listen in on a meeting to which I likely have nothing to contribute and am also likely not to be able to process.
Posted on 2015.01.14 at 10:58
I'm officially off the Hetlioz. It was nice to be able to keep a regular schedule, but I just couldn't sleep regularly. Too many nights where I woke up and couldn't get back to sleep, and that was taking too heavy a toll. (No telling how it'll work for anyone else, such as synecdochic
Doc gave me a referral to another specialist, and will look into some other possibilities.
Meantime, I need to catch up on sleep. Three hours last night.
Posted on 2015.01.12 at 16:34
As for myself...
I'm exhausted. My body has been fighting the Hetlioz. I can fall asleep at roughly the same time every night, but for a long time I wasn't sleeping well. Got the sleep study moved up. Took care of that last week. I have an appointment on Wed (first thing in the morning, unfortunately) to go over the results with the doc. But it's worn me down and I don't think it's sustainable.
Didn't get enough sleep last night, and I'm really freaking tired. But for the four nights before that I slept 10 hours a night... and still was so tired I could barely function. Spending far too many days too tired to get out of bed until lunchtime, if then. Yes, it's nice to be on a daytime schedule, but not at this price. Not if it means I'm too tired to do anything.
In other news... my dog has an appointment tomorrow afternoon. His last. He's old and tired and in pain and can't stand up on his own anymore and is turning away from taking his pills and doesn't seem to be getting much out of life and... it's time. Dammit. At least we got a really good decade with him. He's been the best dog I could hope for. Kindhearted, generous, intelligent, loving. I wish we'd gotten him his therapy dog license sooner, because he loved going out on visits but got too old and arthritic to keep them up after only a year or so. He was there for my grandparents in their last years. He was there for my nieces and nephews as they grew up.
Unfortunately, one of my nieces grew up to be allergic, so, even though she loved him as much as any of us, we're not getting another dog after this. It's going to be really strange here. And probably kind of tense.
I'll miss him. He's been the best.
Excuse me. Going to sit here and cry for a while.
Posted on 2015.01.12 at 14:18
(I will never get over how weird and wrong it feels to type that instead of "Spider-Man.")
Marvel Comics' latest big event is Spider-Verse, which is touted to include "every Spider-Man ever" in at least some role. (Many of them have been killed off on the same page they've been introduced.) One of the latest issues featured the version from the 1978 Japanese TV series, which got some people excited. So Marvel, which had previously published all 42 episodes of the series on their website back in 2009, put up a blog post about how cool this all was
and reminded people that the show was available to stream from them.
The blog post links the first episode, but it turns out the links to the other episodes are mostly broken and/or difficult to find.
It can be done, though. So I'm collecting the links here. Mostly for my own reference, but hey, some of you might be interested, too. The series is pretty interesting, actually, if you like the idea of a Spider-Man (excuse me, Spiderman) who got his powers from the extract of the blood of an alien from Planet Spider and who spends his time fighting an alien invasion of Earth which has been slowly brewing underground for 400 years with no one noticing. ( More about the showCollapse )( Episode linksCollapse )
Posted on 2014.12.24 at 17:10
Anyone want a new icon?
I don't actually need one, but I'd like to support itsamellama
in her fundraiser to get out of an abusive living situation. She goes beautiful art, but I don't currently have anything I need drawn. So... go take a look. She'll do a free icon for you. But if you let me know if you want/need anything, I'll chip in on your behalf.Mel's icon day fundraiser is here.
Posted on 2014.12.23 at 14:15
I'm still here.
I'm still exhausted.
I still have nothing much to say.
Posted on 2014.12.03 at 12:10
Woke up early to see the sleep doctor. Told her I've been keeping to a steady bedtime, but feeling way more tired than usual. Barely functional, really. We talked it over, and I agreed to give it a little longer and then have a sleep study. But we're going to be out of town for a couple of weeks and we need time to schedule the study and then they need time to read the study, so my follow up appointment isn't until the end of January. That means I'll be on this stuff for another two months, at least. Unless I throw in the towel. We'll see.
I am really freaking tired.
Posted on 2014.11.30 at 21:18
I haven't written a weekly summary for myself. I was just too tired to do it on Wednesday, which says something in and of itself. I haven't been woozy since the end of Week 1, but I haven't been sleeping well since then, either. I was hoping it would settle down, but I'm basically on a roller coaster. I don't sleep well one night, so I sleep a lot the next night and then I can't sleep the night after that so I make it up (or at least try to) on the following night. Except that the experiment parameters don't let me sleep in very much, either, so that's kind of been an issue. The good news is that I have been basically keeping to a steady bedtime for almost a month. The bad news is that during that month I've been too tired to do much. Even by my standards. I have an appointment with the sleep doctor on Wednesday morning. I'll go over it with her and see what we can come up with.
Other than that, I was talking to my sister about the dog (while she was here for the holiday). He's getting old and doesn't move around much. She asked me if he's in constant pain. It's hard to tell with him because he's never complained about pain. But the fact that he won't stand up unless he has to says a lot to me. So I said "Yes." But she asked me how I knew, and I realized that I don't, really. I'm just guessing. Just a little while ago I realized that I'm probably a little biased on that question, and it hit me why: There has not been a moment in the last 20 years when I wasn't in at least some pain. Not always bad. I've learned to put it out of my mind as background noise most of the time. But it's always there. That's been the reality of my life. Which I've just sort of accepted and not thought much about, for the most part. But that made me take a step back.
There has not been a moment in the last 20 years when I have not been in at least some pain.
I just needed a minute to step back and process that statement, you know?
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. https://experiment.com/projects/can-sleep-patterns-change-gene-function
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?
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.