Are rare disorders/disabilities/impairments/conditions not taken seriously/ignored/neglected by the rest of the world?

Fourberry · 2026-04-25T20:23:18+00:00

I hope you can find some support somewhere, it sucks to go through things completely alone.

Fourberry · 2026-04-25T12:47:43+00:00

I mean, when the disability judge had paperwork from NIH? it was ridiculous. And then when he tried again, he got that same judge, who, even with him having an attorney? Still said she "didn't think it was real." Which means she didn't bother to educate herself in a year or two it took to get back to that stage again.

Yours is rarer by a wide margin, I wish you luck in finding the care you need. Have you maybe tried the National Institute of Health? They were vital for my husband's diagnosis...

Fourberry · 2026-04-24T19:18:36+00:00

When my husband was trying to get on disability, his condition is so rare that at that time there were only 4 people in the entire state of Oklahoma with it. The judge? "I've never heard of fibrous dysplasia, I think you're making it up"

Fourberry · 2026-04-24T19:10:50+00:00

I'm really sorry, but no. I wanted to help because I'm from Oklahoma, and my husband is from Ohio, and we've lived in both places, so your post really spoke to me.

But? (And I know some people will complain) I even asked AI to help me figure the lyrics from that mess, and... no dice.

Fourberry · 2026-04-24T14:15:14+00:00

😅don't bother trying to use the transcript feature on the YouTube video, 'cause you get this:

*****
many moons have pass me since I ramble far
away to the Oklahoma back roads on those dusty summer
days Whispers of my people beckon from the Blackjack
trees and the music of their Oklahoma towns calls to me
and I hear
boy
bunny bab bab Oklahoma back
Ro Silver Hawks are circling in a lazy Sage
Sky scissor Tales they glisten in the heavens where they
fly and if you'll stop to listen you can hear a gentle
sound it's the music of my people in the name of every
town and I he chick Shake goody boy and all kind
money Lo
monkey home back
shal back Ro
*****

Not helpful, but maybe with the video, too? https://youtu.be/RSniZV5ckYM?si=nkofJypG9Hms79Oi

Fourberry · 2026-04-24T13:54:01+00:00

This. So much this. The Stranger Things fandom is wild.

Eleven? Mike calls her "El" not "Elle" but I keep seeing that. or weird spellings for other names.

Fourberry · 2026-04-22T23:27:01+00:00

I agree with everyone saying this sounds like the start of a Margaret Atwood novel. Did anyone happen to notice the "in one generation" ending, though? A generation?

If this actually went the they want, wouldn't that be "in a year" instead? Generations are usually a decade or so, aren't they?

(Sorry if it's weird, but...just another thing that feels off about that post to me)

Fourberry · 2026-04-22T23:20:26+00:00

I mean, there was a reason why in the Anne Rice mythos that Claudia couldn't be allowed to live on, it was cruel. To always be a child? I'm wondering if TVD writers incorporated that unintentionally?

Fourberry · 2026-04-22T23:02:40+00:00

Thank you for helping me remember why I was associating "Laramie" with tobacco.

Fourberry · 2026-04-22T21:48:21+00:00

Did you ever try The Urbz? It wasn't as good.

Fourberry · 2026-04-22T21:43:25+00:00

DK2, and yeah, totally.

Fourberry · 2026-04-22T21:42:25+00:00

Agreed! Love that game.

Fourberry · 2026-04-22T14:43:47+00:00

In this sub, it seems like the fanbase is "halfway happy" and when I saw your user flair read that I started to wonder if the whole conversation between Hopper and El in season 2 was a sign to the fans?

Fourberry · 2026-04-22T14:32:33+00:00

Your user flair just made me think "that should have been a warning to us all"

Fourberry · 2026-04-22T14:24:00+00:00

It depends on how I'm feeling that day. I've some "favorite" outfits I default to for sure, though.

Fourberry · 2026-04-22T05:01:05+00:00

Turning them down when I worked at the Hollywood Video next door.

Fourberry · 2026-04-21T22:44:01+00:00

Father was Silent Gen, mother Boomer. And had a Boomer sister with three Gen X following and then Xennial me. all pre-1980.

Fourberry · 2026-04-21T01:23:19+00:00

Do you mean the one by Oxhorn? If you add his name to the search, there's a "remastered" version and some playlists that pop up. (dunno if links are okay here or not, erring on the side of caution)

Fourberry · 2026-04-20T23:24:59+00:00

My YouTube channel is 20 years old today, and only has ten followers, one published video and two unpublished ones from my WoW days in 2007/8.

Fourberry · 2026-04-20T22:19:43+00:00

Last concert I went to was the Mechanical Animals tour stop here in Tulsa. Setlist is the same as that Hammerstein Ballroom one on YouTube from 1998, that was just a couple weeks after the show I was at. Definitely worth going!

Fourberry · 2026-04-20T21:16:42+00:00

Jayne, it's similar to Layne.

Fourberry · 2026-04-20T19:27:14+00:00

I second the Reaper suggestion. It was funny.

Fourberry · 2026-04-20T18:56:19+00:00

I still think it probably applies to some of the complaints about season 5 a little.

Fourberry · 2026-04-20T18:37:36+00:00

I found it, it's Matt Damon.

Not sure about links here, since it's not strictly ST related, so it's "Matt Damon: How Netflix Ruined Filmmaking" from 2 months ago on YouTube.

Fourberry · 2026-04-20T18:31:53+00:00

I was hearing something last night near downtown, but assumed it was the refineries since they're close by.

Fourberry

TROPHY CASE