Posted on 2016.03.20 at 03:44
The last 5 months, in a large nutshell:
You know that feeling when you're totally exhausted after a really long day (or maybe first thing in the morning after a rough night, before you've had a chance to get coffee), and you just can't handle anything? It's hard to think, hard to move. Just totally wiped. All you want from people is to be left alone because the tiniest request for attention is overwhelming.
Now imagine that several times worse.
Now imagine that, on top of that, you've got a condition where all your nerves are hypersensitive. To the point that a friendly pat on the back can leave a stinging ache that lingers for several minutes. So that moving through the world is a constant question of "is doing this worth the pain it will cause?" And your brain is so exhausted from all the constant noise that it's hard to think, and everyday noises and interactions can easily become overwhelming.
Now remember that when you get really tired in the way I described at the beginning, your nerves become hypersensitive and it's really hard to concentrate or hold a train of thought, and little things can easily become overwhelming. Now imagine that problem amplifying the chronic hypersensitivity you're already dealing with as a baseline.
Put that all together.
Exhausted. Overwhelmed. So woozy you can hardly sit up for hours at a time. Beyond hypersensitive. So tired you can hardly find the strength to breathe. There are times when you can feel the strain of your rib muscles just to keep going. Trying to muster the concentration to put words together, remember what you're trying to say, endure the pain and fatigue of pushing your ribs to take a deep breath, and coordinating the muscles of your voice box all at the same time is like running a juggler's marathon. You can't read a book because it's too hard to sustain focus to follow the plot. You can't watch half of what's on TV because it takes more concentration than you have to spare. You sit in the living room with the door closed, and the sound of someone gently clattering dishes halfway across the kitchen is like thunder. Just the weight of having someone physically in the same room becomes oppressive.
Then some doctor says, "Oh, it's a flare-up. If you could only get moving, you'd be fine." Except that it feels nothing like a flare-up, and you've never had one that lasted a week, let alone four months. But there's nothing else on the table, so you roll with it. He gives you a steroid. Now you've got chest pains. Your blood sugar is soaring. (That causes extra wooziness. Also, your brain is trying race because you've got a sugar rush, except it can't because it's too exhausted to handle anything.) And now you can't sleep because the blood sugar spikes and chest pains keep waking you up.
You can't think. You can't move. You can't breathe. Literally everything is overwhelming, and most of it is painful. You struggle to find something that will just let you zone out until you can try to sleep again.
You lie there, trapped, as your mind falls apart from sleep deprivation. You want to scream from the depths of your soul from the existential horror of watching your very self shrink and hollow and crumble, but you're too worn out to breathe. So you bury yourself in whatever you can tolerate, and try not to think. Which mostly works, except when you get too woozy to even watch cartoons.
But you're so experienced at putting this stuff into words and slowly typing out coherent sentences even when your head is spinning and you can hardly see straight that people have trouble believing you.
Posted on 2016.02.15 at 05:10
Things Donald Trump said in this weekend's Republican Primary debate:
- The Iraq war was a huge mistake, and you shouldn't vote for someone who couldn't admit that until last year.
- There were no WMD in Iraq.
- The Bush administration knew that, and they lied us into a disastrous war that cost us trillions of dollars and netted us nothing.
- The Iraq war destabilized the Middle East, bringing about the current situation.
- We shouldn't cut funding to Planned Parenthood because, while he's against abortion, they do a lot of good work for women's health.
- You can't just say that "Bush kept us safe" when 9/11 happened on his watch, and he ignored warnings from his own administration's CIA.
Man, that kind of reality-based rhetoric is going to kill his poll numbers. He's got to get out there ASAP and say something insane, hateful, or shockingly offensive (preferably all three) if he's going to have any chance of undoing the damage and winning over the GOP base.
Posted on 2015.12.23 at 05:17
Conversation with a friend sort of led to the creation of a new icon. Feel free to share/use/whatever.
Description: Robotic dog K-9 from Doctor Who. Caption reads DOG MATIC.
Posted on 2015.07.02 at 21:53
A decade or so back, Marvel did a miniseries about Daredevil's early career. Daredevil's original costume was yellow, so the book was titled "Daredevil: Yellow." (And that really influenced the coloring of the comic. One of the little things I loved about the Netflix series is that they took a cue from that book and had a lot of yellow backgrounds, with the gradual introduction of bits of red towards the end.)
That became something of a tradition for Marvel. In the years since, they've done flashback miniseries about other characters, each named for a color prominent in that character's costume. Spider-Man: Blue, and so on.
More recently, Marvel made a big move by depowering Steve Rogers and having his longtime partner, Sam Wilson (The Falcon) take over as Captain America. You may recall the media buzz over a year ago about the new Captain America being a Black man.
Right now, Marvel is in the midst of what may be their largest event yet, resetting the entire multiverse to introduce a new, more up to date status quo. Spider-Man will be Miles Morales, the biracial teen who took over as Spider-Man in the Ultimate universe, there will be more emphasis on female characters, including an all-female team of Avengers, a spotlight on the new Ms. Marvel, a Muslim girl, and so on. On the other hand, while Logan himself will be dead, there will be two characters who go by Wolverine. Because you can never have enough Wolverine, apparently.
It's not clear yet what will happen with many other characters. The event is just starting, and Marvel themselves may not have decided. But they did announce a new flashback miniseries about Captain America's early days in WWII.
See if you can spot the problematic part of that.
I really wonder what they were thinking.
Text: Captain America
Image: Steve Rogers as Captain America shouts as he powerfully holds up his shield.
Posted on 2015.06.28 at 18:27
I don't know how much this will help, but I'm going to try to clarify some things.
1. Drug testing welfare recipients is a bad idea. Florida implemented this law. Very, very few of recipients tested positive. The state ended up paying out orders of magnitude more in testing fees than they "saved" by withholding the pittance from the few who did test positive. And the tests are prone to false positives. Eat a poppy seed bagel a week before the test, and it will show positive because it can't tell the difference between lingering opiates from that and traces of heroin. It's just a further indignity and bureaucratic hurdle heaped upon people who are already having to swallow their pride and ask for help. The law has been a disaster for everyone involved except the woman who owns the company that does the tests... Who just happens to be the governor's wife.
2. The Confederate flag is racist. I cannot believe this is in dispute. The leaders of the Confederacy made it explicitly clear that they were fighting for the right to subjugate Blacks and keep them as slaves. The Confederacy were also traitors, starting the bloodiest war in American history against the legitimate Federal government with the goal of breaking the country apart. The flag itself did not go up on state capitols until the 1960s, as a direct protest against desegregation, and as a visible symbol of the entrenched power of Whites over Blacks. Oh yes, and in much of Europe, where swastikas are banned, the Confederate flag is used by neo-Nazis as a proxy. Just in case you had any doubts about how racist it is. And that attitude and the symbol of the flag itself directly inspired the Charleston shooting.
3. The rainbow flag, on the other hand, is a symbol of pride from an oppressed minority. People who are asking for equal treatment, protection, and respect. They're not out to hurt anyone or take anything away from anyone. Rights aren't a zero sum game. Giving them to others doesn't deprive you of anything.
4. Marriage is a legal contract. It's entirely in the government's hands. A church can preform a wedding, and that's within the laws of the religion. But a marriage is a matter for the state. And, in this country, we have separation of church and state. No one gets to impose their religion, especially not when it means taking rights away from others.
5. That your religion describes homosexuality as a sin is irrelevant. In my religion, pepperoni pizza is a sin. It is an abomination before the Lord to eat the meat of a pig. And even worse when you cook that meat with dairy. Guess what? I don't get to outlaw it. I can't tell you that you're not allowed to eat it because my religion forbids it. I don't get to impose that on you. My religion applies to me and those of my faith. No one else. And it has no place in secular law.
Posted on 2015.06.28 at 18:26
A friend on FB was looking at all the happy rainbows and lamenting that the culture and laws of her own country are still so incredibly homophobic. This is what I told her. (The "posts just like this one" at the end refers to her OP about thinking her country should be more accepting, and wishing it were so.)
Here's the thing.
In the early 80s, rampant homophobia was so much the norm that I would not let my father kiss me on the cheek because I'd internalized how terrible it was for a man to kiss another male.
In the mid-80s, mainstream broadcast news was pretty sure that if a woman turned up HIV positive, it must have been because her husband had been hanging around gay bars. Anchors noted in passing that there were respected clergy who were convinced that AIDS was a punishment from God for all the dirty icky sinful things gay people did. And everyone knew that a stable gay relationship was one where you stayed with the same man for the whole night.
In the 90s, a major question in the news and in Congress was what to do about the discovery that gay men wanted to serve in the armed forces. On the one hand, there were those who didn't want to exclude anyone willing to fight, but there were many who felt it would be inappropriate and hurt morale and destroy unit cohesion. Eventually, over many objections, we got the compromise of Don't Ask Don't Tell. Which seemed pretty fair at the time. Just stay in the closet and no one needs to worry. Problem solved!
In 2008, on the same night Obama was elected, thanks to a massive ad campaign financed by the Mormon church, marriage equality (still a fairly new idea that only the most Liberal states were even trying) was repealed by popular vote in California.
And now, here we are. DADT is gone, and we have nationwide marriage equality.
But DADT was a hard fight. And it's only in the last couple of years that marriage equality gained a tenuous majority of popular support. It was passed by various state legislatures, but never won on an open ballot. It had to be imposed by the courts. And still there are many deeply opposed.
We've got a long way to go. But look at how far we've come. In one generation.
And I think a fair amount of that came from the Internet, which gave people a place to find support, make connections, build a movement... And expose the populace to a new narrative, new realities. To openly gay friends.
Change is possible. And it starts with posts just like this one.
Posted on 2015.05.25 at 14:23
bought out a restaurant and leased the space!
My manager did his first interview with a local news blog
last week. (I see someone named Frank is skeptical of us. We'll do our best to be neighborly and earn his trust.)
So excited that we can actually start building and creating!
We had our first party this weekend. I met some of our new neighbors and one of our future bartenders and showed my family around the place. It was a lot of fun. Especially seeing my nieces and nephews' enthusiasm.
We've registered our domain name and are beginning to set up some social media accounts. We've got plans to redecorate the place. We're looking for a chef. After two years of waiting and false starts, we're finally moving, and moving fast!
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?