ysobel: (me)
[personal profile] ysobel
Okay, so, uh. Most of you know that I have a condition called FOP -- Fibrodysplasia Ossificans Progressiva. For anyone who doesn't: it’s a really fucking rare medical condition where the body creates bone in and around muscles and tendons, progressively immobilizing the body into a human statue. It is incurable and untreatable.

This is a highly relevant video:



The 11-year-old in that video, Erin, got sick in April with basically the common cold, but it landed her in ICU. Between the severe scoliosis that FOP causes (I have way milder curvature because I was older when I started losing mobility, 10 instead of Erin’s 3, and my progression was slower) and the bone locking up her rib cage and taking up space in her chest, her airway is severely compromised. She was intubated as a last-resort measure for keeping her alive.

For the last two months, she’s been bouncing between ICU and “regular” hospital. About a week ago, her parents and doctors were discussing long term care options -- either BiPAP and hope like hell she never gets sick again, or a permanent tracheotomy. The trach procedure, complicated by the restrictions of FOP, would have her in the hospital until at least September and probably longer.

Four hours ago, she stopped breathing.

She has been successfully (re-)intubated, but... it’s bad and scary and so fucking not fair she’s a fucking *kid*, she isn't even 12 yet, she shouldn't be in the fucking *hospital* for *months*, let alone almost fucking *dying*.

(and if I’m being honest, this is fucking scaring me, not just on her behalf. My airway isn’t as bad, but this could be in my future too, and in another universe it could have been my path.)

So. Please, if you pray or send positive vibes or whatever, please send some to Erin and her family.

(She also loves postcards -- address is here -- but mainly I just want positive energy out in the universe for her.)
wychwood: man reading a book and about to walk off a cliff (gen - the student)
[personal profile] wychwood
55. The Interior Life, Dorothy J Heydt - DON'T JUDGE


56. The House of Shattered Wings - Aliette de Bodard ) Ultimately too dark for me, and for the plot to work for me, but I'm not giving up on de Bodard. This series, maybe.


57. The Young Stepmother and 59. The Carbonels - Charlotte M Yonge ) The Carbonels is not great, but The Young Stepmother is solid (for values of Charlotte Yonge).


58. Mortal Engines - Philip Reeve ) I've read worse; SFF-minded children might enjoy it, and there's definitely worse out there.


60. A Closed and Common Orbit - Becky Chambers ) Like the first one; entertaining, sometimes interesting, would probably read more, but I was not blown away.


61. The Art of Deception - Nora Roberts ) An acceptable-enough Harlequin, if you can get past the standard "consent is UNMANLY" elements.


62. Green Rider - Kristen Britain ) A solid fantasy - I want to read the rest of the series, now.


63. Too Like the Lightning - Ada Palmer ) A nasty unpleasant piece of work, with some potentially interesting ideas and worldbuilding that couldn't sustain my enjoyment in the face of the rest of it.


64. All the Birds in the Sky - Charlie Jane Anders ) Ultimately a bit unmemorable, although I enjoyed it well enough in the reading.


65. Words are My Matter - Ursula Le Guin ) Somewhat insubstantial, unfortunately.


66. The Geek Feminist Revolution - Kameron Hurley ) A much better collection - I like Hurley's nonfic much more than her novels!


67. Black Panther: A Nation Under Our Feet - Ta-Nehisi Coates and Brian Stelfreeze ) Definitely not your typical superhero comic, even your typical thoughtful superhero comic; I'm interested to see where they take this.


Four Mantlemass books - Barbara Willard ) Classic English children's books, and still well worth reading. I should make sure I get hold of the others.

Music meme and gaming

Jun. 26th, 2017 08:00 pm
liv: alternating calligraphed and modern letters (letters)
[personal profile] liv
Day 9 of the (in my case very slow-running) music meme asks for a song that makes you happy. And I have quite a lot of those, making me happy is a big reason I have a music collection at all. I think I'm going to go for Complex person by The Pretenders. The lyrics are not all that cheerful in some ways, but I love the bouncy tune and I always hear this as a song about determination and not letting things get you down.

video embed, actually audio only )

Also I've had a good week for playing games: mostly list with short comments )

QotD

Jun. 26th, 2017 05:24 am
dglenn: Me in kilt and poofy shirt, facing away, playing acoustic guitar behind head (Default)
[personal profile] dglenn

"Bees do have a smell, you know, and if they don't they should, for their feet are dusted with spices from a million flowers." -- Ray Bradbury (b. 1920-08-22, d. 2012-06-05), Dandelion Wine

Harry Potter trends on AO3

Jun. 25th, 2017 06:05 pm
beatrice_otter: Luna Lovegood, Hermione Granger, Cho Chang (Girls of Potter)
[personal profile] beatrice_otter
I read Harry Potter fic, even though I'm pretty sure I've never managed to read any of the novels all the way through, or watch any of the movies start to finish.  Whatever, that's fandom.

Anyway, I periodically go through looking for new fic on AO3, and the best way (imo) to do this is to click on the Harry Potter works tag, sort by date, and then put "kudos>100" (or whatever other kudos threshhold you choose, today I picked 1000 because it's such a huge fandom) so you only get stuff a lot of people have liked.  (If you just go "sort by hits" or "sort by kudos" in a fandom as old as Harry Potter, you only get the oldy-goldies, which I've mostly read already or know I won't like.)

I also have AO3 Savior, a greasmonkey script added on to my browser that allows me to blacklist tags and such.  Items tagged with stuff I don't want to see show up in Works lists as blocked, with reason for blocking.

I went looking for Harry Potter fic today.  Apparently, a VERY high percentage of popular fic right now has either character bashing or Voldemort sexytimes.  Also!  I have "*/Tom Riddle" and "Tom Riddle/* both blacklisted (the asterisk tells it to block anything there, so I don't have to go through and list alllll the possible Tom Riddle pairings).  But apparently, if I want to block threesomes with Riddle, I have to ALSO blacklist "*/Tom Riddle/*"

Why do so many people want to write and read about Voldie sexytimes?!?  I do not get it!  I'm not judging, you do you, but gah.

(The bashing is, alas, a Harry Potter trend of longstanding.  Thank you to everyone who a) realizes that that is what you are doing and b) tags it properly.)
twistedchick: General Leia in The Force Awakens (Default)
[personal profile] twistedchick
Ifixit.com, the free repair manual.

The world's first waterpark for people with disabilies.

Facebook now provides resources for journalists' safety.

Trump has shut off the televised feed -- and all cameras present -- at press conferences (thus ensuring the only video record of what was said is in his hands), and journalists condemn this -- but they're not boycotting the conferences.

The Washington Post is using an AI to moderate comments to the paper.

Johnny Depp opened his mouth at the Glastonbury Festival and dropped a big one: When was the last time an actor assassinated a president? As if that weren't enough to catch the morning edition, his financial woes -- what is this, spending $2 million a month? -- may sink the Pirates franchise. I look at his spending habits and all I can think is, this is a guy who was a kid who was really poor at some point, and it has never left him.

Famous women have been denying the mores of fashion (and conservatives) and wearing menswear for years. Here are some photos.

Trump is being sued for intentionally destroying presidential records. And also, he's played upon the grief of people whose family members were killed by undocumented immigrants (whether in a car accident or otherwise) to get their support.

Canada is tired of dealing with Trump, so now it's doing business with individual states and cities.

Trump also has dropped a grant for a nonprofit that helps people leave violent right-wing groups. It's like he and his crew want us to be harassed by neoNazis, isn't it?

Sen. Warren blasts the blood-money cuts in the Republican anti-health bill.

Unfortunately for us all, the Senate can't slow the progress of the GOP bill once it's written, so they're doing all they can now. And here's the Economic Policy Institute on what we have to lose.

And five Republicans refuse to support the bill -- one because it's too harsh, four because it's too liberal. I have some concerns about the mental health of those four. And McConnell may think he will win by losing if it goes down at a vote. Why? Then it's over for this year and they can go on to amending the tax code to reward the wealthy and steal from the rest of us. What a thoroughgoing scoundrel!

I don't want to say this, but there are strong rumors that Supreme Court Justice Kennedy may want to retire at the end of this term. That means either we go back to an 8-person court or we get another retroRepublian, for the next 30 years. But, in the meantime, the Court has agreed to hear a bill on gerrymandering that will affect Wisconsin, Pennsylvania and Maryland (and probably others as well.)

Bill Cosby, who will face another trial in the aftermath of his mistrial,
plans to give speeches on how not to be arrested for sexual assault. No printable comment on this is possible.

More on Yellowstone grizzlies losing endangered-species listing. Thing is, they don't always stay in Yellowstone, and they can be hunted if they stray outside.

Here is a graphic from NARAL that you are free to share where you will.

On making habits, brushing, and JKD.

Jun. 25th, 2017 12:20 pm
blimix: Joe by a creek in the woods (Default)
[personal profile] blimix
Half a lifetime ago, I had poor dental hygiene. I also lacked insurance, and wouldn't go to the dentist unless I had dental pain. I would occasionally try to get into the habit of brushing and flossing nightly, which would last for a week or so, but each time, the first night I skipped (sometimes with good reason) would make it much easier to skip subsequent nights. Then I'd have to start from scratch the next time.

I inherited a small (but significant to a poor young adult) amount from a grandparent, and used it to get the dental work I needed. (By that time, I had a broken tooth which didn't hurt, but which I couldn't ignore.) This became a wake-up call, due to all the time, money (most of the inheritance), and discomfort this cost me. I knew that I could not afford to put myself in that position again.

I started getting regular dental exams, and filling cavities before they became bigger problems, paying out of pocket. (A visit every six months didn't cost that much.) More importantly, I was determined to brush and floss regularly. Armed with knowledge of previous failures, any time I was tempted to skip hygiene, I would think, "Yeah, and then I'll skip it tomorrow too, I'll get out of the habit, and in a few years, I'll need a ton of dental work again." Then I would grudgingly go brush my teeth.

After two years of this, I had a night when I was crushingly exhausted. I made a conscious decision to skip brushing and just collapse into bed: I gave myself permission to do it just this once. Thirty seconds later, without having made any other decisions, I found myself standing at the sink, brushing my teeth.

Now that's what I call a habit.

Now I have my Jeet Kune Do class, which I love. For the first several years, I was the one who showed up to every single class. In the past year, various commitments and responsibilities have eroded that. Then I was sick for most of February (it was like a nasty cold that lasted all month), still had no energy in March, and was badly out of shape after that. Once I could, I resumed hiking a lot, to rebuild my endurance so that I could deal with the workouts in class. Various circumstances continued costing me sleep and energy (not all of which are to be complained about; we recently had three days on Long Island for a wedding, for example), and the best days for hiking often coincided with class days, so I missed a lot of class. (But on the up side, I finished hiking every part of every marked trail at Grafton Lakes State Park, which has way more trails than I had realized! I found many (endangered) Karner blue butterflies there, too.)

This week, I've had two days when my energy was balanced on the border of what I felt I needed to attend class. It could have gone either way. So the old pattern recognition kicked in: "I've missed way too much class lately. If I choose not to go when I can, it will endanger my good habit. So go." I went, had a great time, and knocked some rust off my skills. I think I'm going to be sore for two weeks from something I did to my pectoral muscle on Friday, but I'm still glad I went. JKD is important to me, and while I occasionally choose to miss it for other opportunities, responsibilities, or recovery, I never do so lightly.

QotD

Jun. 25th, 2017 05:24 am
dglenn: Me in kilt and poofy shirt, facing away, playing acoustic guitar behind head (Default)
[personal profile] dglenn

"Ice cream is the perfect buffer, because you can do things in a somewhat lighthearted way. Plus, people have an emotional response to ice cream; it's more than just food. So I think when you combine caring, and eating wonderful food, it's a very powerful combination." -- Jerry Greenfield

[Eid Mubarak to everyone celebrating! And unrelatedly, distant greetings to all my friends gathered in NYS for ice cream and camaraderie this weekend -- hoping next year I can manage to make it up there myself again, after too many years absence.]

good? bad? who knows?

Jun. 24th, 2017 04:24 pm
twistedchick: General Leia in The Force Awakens (Default)
[personal profile] twistedchick
It's been a day and it hasn't stopped.

There are two farmers markets locally that we go to; the SU goes to the one by the railroad tracks with the good meats, and I sometimes go to the one downtown (locally, not DC), which has good veggies and fruit. I got ready to go to that one today. I got less than a mile away when my stomach said, loudly, "I don't feel well. I may give you back what you've eaten if you keep going."

What could I do? I took the next cross-street, which is a fairly direct route home, and came home and took something to settle the stomach, which continued to grumble.

I had put down my glasses for some reason; when I picked them up, one side piece fell off, behind the hinge. We went to Kaiser; no, they couldn't fix it, but they recommended a shop some distance away that was going to close in about 90 minutes. It took half an hour to get there, but we did. The cost isn't bad -- $65 is a lot better than ordering new glasses and going without for two weeks because the old ones hurt to wear -- and I can pick them up Monday.

The guy who does the repair also does lenses, replacement and new prescriptions, and I may take my very old Bausch & Lomb sunglasses there to get polarized lenses for them, or maybe even the distance half of my prescription so I can use them in situations where I'm at an angle to the sun that puts light on the *back* of the glass (which means I see the glass surface or dust or smears and not through the glass).

So, I can't drive till Monday after we pick the repaired glasses up, since I need them to drive (legally). I was going to get tickets for a local play - I know one of the actors - but the computer glitched on me and blew the sale, and I'm too frustrated, so it will be next weekend.

(I am very glad that I did not agree to be in the Second Life fundraising event today -- which took place about the same time we were driving along the six-lane looking for the address for the glasses repair place.)
(Oh, yeah, I got locked out of my credit union account on Thursday -- their new 'security system' sent my passcode slower than their time limit for entering the passcode, so I had to repeat the process, and then it said that was the wrong passcode... I got in this morning, no problem.)

And I discovered one of the two soprano coyotes -- it's the collie that belongs to what must be new people in the house behind us (none of the people look familiar and the others had a beagle.) It was listening for the *real* coyote in the park and singing replies. The baritone coyote is still out there being a coyote somewhere, I suspect.

But the contractor who bid on the masonry work we need looks very good and we said yes. And the garlic and onions I planted seem to be doing fairly well; I need to trim back lemon balm from shading the garlic, but that's all.

So the world is slightly fuzzy around the edges, but it's not that bad.

the struggle is real

Jun. 24th, 2017 07:02 am
kareila: a sea turtle with the text "all the way DOWN" (turtle)
[personal profile] kareila
Continuing to have trouble setting aside time to focus on work with the kids home for the summer.

After taking my mom to her doctor appointment and subsequent errands on Tuesday, I spent most of Wednesday through Friday sick in bed with a fever and sore throat, but no other obvious symptoms. Now I'm finally feeling better, and Robby has decided that since Tropical Storm Cindy's gift of some ridiculous number of inches of soaking rain will prevent him from doing his usual maintenance out at our church this weekend, this is the best time to disrupt the downstairs living area and try to finish constructing Connor's loft bed.

If I didn't have to take the kids to swim lessons today, I'd probably flee to the library and try to get some serious work done. Maybe that strategy will work next weekend, if I can find someplace to go that isn't closed for the holiday.

In other news, Steam is having their annual sale and I've discovered that most of their older LEGO games (pre-Marvel) are PC-only. I really wanted to put the Harry Potter games on my laptop so that I could play them without broadcasting them to the rest of the household. There's also a PC game that Connor wants that is too resource intensive for his poor old gaming PC. But I read on Twitter last night that Starship Titanic is on Steam for $1.49, so I'll get that if nothing else. I've been wanting to play it again ever since I saw Passengers.

I'm also realizing how much cheaper and easier to find the PlayStation 4 is compared to the Nintendo Switch, and that's probably also the better platform to choose if I want to play Kingdom Hearts 3, assuming it ever gets released.

QotD

Jun. 24th, 2017 05:24 am
dglenn: Me in kilt and poofy shirt, facing away, playing acoustic guitar behind head (Default)
[personal profile] dglenn

"We're at a party at a Chuck e Cheese. This place is like something you'd subject a Panamanian dictator to. Why does it exist?" -- Zinnia Jones, 2017-06-03

watersword: Keira Knightley applying lipstick and looking in a mirror, with the words "a work in progress" nearby (Keira Knightley: lipstick)
[personal profile] watersword
Today I called Sen. Schumer and Sen. Gillibrand and said the following:
Hi, my name is [[personal profile] watersword] and my zip code is [redacted]; I'm calling to ask you to add a tally mark to your count of constituents who have called and are very angry about the Republican anti-health care bill.


Both times I was answered fairly promptly, the staffer was clearly charmed by my "I know you are on my side, I'm trying to help," and I was informed that Schumer's office has gotten ~500 calls over the past ten days on the issue (I'm not sure if that's all the offices, including Washington, or just the NYC office I called), and the Gillibrand staffer I spoke was on his ~60th call on the subject for the day. This is a horrible slog but I am going to keep showing the fuck up.

Dropshipping

Jun. 23rd, 2017 02:45 pm
blimix: Joe by a creek in the woods (Default)
[personal profile] blimix
I don't order items from the Amazon warehouse (3rd party sellers are fine) because of humanitarian concerns over the treatment of their warehouse workers. If it costs more, that's fine: It only reflects the real costs of treating employees like human beings. So when I buy something on eBay and it get dropshipped from Amazon (meaning the seller doesn't have it, they just order it on Amazon as a "gift" for me), that annoys me. They just profited by wasting my effort to make the world a better place. This is a common practice that does not violate their agreements with eBay or Amazon (unless they ship with Amazon Prime), and it satisfies their orders, so there's no justification for negative feedback. I just want to be able to avoid Amazon dropshipping, and I'm not sure how (without giving up eBay entirely). I could look for low-volume shippers, but that's a very inexact heuristic.

Religion and sexuality

Jun. 23rd, 2017 03:12 pm
liv: In English: My fandom is text obsessed / In Hebrew: These are the words (words)
[personal profile] liv
Recently two special interest groups I'm second degree connected to have been involved in scandals around religious attitudes to homosexuality.

The leader of a tiny UK political party, the Liberal Democrats, resigned because
To be a political leader - especially of a progressive, liberal party in 2017 - and to live as a committed Christian, to hold faithfully to the Bible's teaching, has felt impossible for me.
And a tiny UK Jewish denomination, Orthodox-aligned Sephardim, are up in arms because R' Joseph Dweck taught something about homosexuality in Rabbinic sources and commented
I genuinely believe that the entire revolution of…homosexuality…I don’t think it is stable and well…but I think the revolution is a fantastic development for humanity.


This stuff is minor on the scale of things, but the media love the narrative of gay rights versus religious traditionalism. Anyway lots of my friends are religious Jews or Christians who are also gay or supportive of gay people and other gender and sexual minorities. So lots of my circle are exercised about one or both of the incidents.

opinions )

QotD

Jun. 23rd, 2017 05:24 am
dglenn: Me in kilt and poofy shirt, facing away, playing acoustic guitar behind head (Default)
[personal profile] dglenn

"We stand on the shoulders of giants who bothered to login to StackOverflow and explain their problem in words easily indexed by Google." -- SwiftOnSecurity, 2017-06-01

[But also, of course, to the ones who came before StackOverflow, such as Alan Turing (b. 1912-06-23, d. 1954-06-07)]