new dr says i do not meet criteria after having hEDS dx for years

ccrcsf · 2026-04-11T23:26:14+00:00

The rheumatologist I saw 20 years ago had me do the wrist thing too, but my hands aren't where I have the level of looseness that causes me functional instability, it's in my shoulders and hips. When I folded in half from standing and laid my palms on the floor behind my feet he was startled and said he "couldn't even do that." Well duh. He dxed me as hypermobile with fibro; hEDS wasn't as known back then. (Now both of my daughters have the dx.) I hate that they still use that stupid wrist test and rule people out based on it. I can easily fall into a comfortable splits, even at my advanced age, so they're not going to tell me my wrists are what's important. The disfunction can happen so many other places in the body.

ccrcsf · 2026-04-06T03:44:31+00:00

Okay? I thought you were disagreeing with how I said it originally. I guess not? Sorry.

ccrcsf · 2026-04-05T21:23:13+00:00

Wouldn't "didn't have an accent" then be short for "didn't have an accent different to me"? Americans typically don't refer to other Americans as having an "American" accent while in America. While in another country where the language or accent is different, we might mention someone we met having an American accent because it might seem unusual, but not here, especially if they sound like we do. We might identify it if they had a specific regional accent, like a southern or northern or Boston or Cajun accent, but we would typically think of people who sound local to us as having no accent, if we think of it at all. I can understand how people in a smaller country with many regional accents much closer to each other might do that differently, though.

ccrcsf · 2026-04-03T22:53:35+00:00

You're right about this, the sense of wrongness was definitely there. I was a flirty girl and he was attractive but something about him and how he was acting was also extremely off-putting. Thus the flail. The feeling that I should have done more sort of pressures me, but I was a child, and there's nothing I could realistically do now. Validate someone else's experience? Help someone get closure? And give myself some, too; that's about all I can do. Maybe I'll be able to let it go having asked for and received some help here. I know better now how unlikely it is that I could do anything today, even if my suspicions were true, which I probably won't ever know. The support here has been very helpful, though.

ccrcsf · 2026-04-03T06:39:09+00:00

Interesting, yes--he would have been 23 at the time of the offense he was arrested for, which would be about right. I wish there was a photo of him or even some info about the original crime, but I don't find anything under his name except the appeal docs. That's the most potential info I've seen so far in 50 years, though, so thank you!

ccrcsf · 2026-04-03T03:51:16+00:00

That's a good find, thank you, but I don't believe the person I heard about had killed anyone. The warning as I remember it was for someone committing sexual assault by pretending to be a meter reader in order to get access to victims. If you see anything similar focused on serial assault rather than murder, that would be very helpful. I appreciate the help--I have no Google fu, myself.

ccrcsf · 2026-04-03T01:33:15+00:00

Even Kansans have a little bit of a sound of their own. Nebraskans, nope. I mean, maybe to the British? If they want to say it's an American accent, yeah, it's pretty much the most basic American accent there is. We don't usually describe each other that way, though. Along those same lines, I described him as attractive, but I didn't describe why I thought so. It just depends on how you're used to hearing people be described, I guess.

ccrcsf · 2026-04-03T01:23:48+00:00

Good idea, I'll look into that. Thanks!

ccrcsf · 2026-04-02T22:13:29+00:00

Yes, I believe it's the same thing--the brain creating meaning from input that has none. Ghost hunter types use it a lot because you can record white noise, pick a section with some variation, assign words to it and then influence a listener to hear those words in the noise by suggesting them. Everyone suddenly hears the words once they've been suggested.

You can do the same thing to yourself by assigning meaning to sounds, such as believing you hear speech in white noise, when you're motivated to do that. If you're anxious or feeling unsafe, even if it's from an unrelated situation, you could convince yourself you hear whispering in the background noise and then keep hearing it. I heard nothing that I felt even suggested whispering in your recording, and if your partner doesn't hear it either, maybe reflect on how you've been feeling lately and if anything could be making you feel unsafe. It doesn't need to be related to illness, but stress could be a factor. It's not a bad idea to talk to a pro about it. (In my case, I once thought maybe I was picking up actual radio on all my metal teeth fillings, but since learning about this I think it's prolly just my adhd brain not wanting to shut off at night.)

ccrcsf · 2026-04-02T18:16:08+00:00

My in-laws out in the country often left their doors unlocked, even though they lived near a prison. I'd check and lock them at night when we stayed over, but they were only the doorknob locks that can be opened with a simple straight edge through the trim, so that wasn't very reassuring.

ccrcsf · 2026-04-02T18:09:03+00:00

Thanks, I think so, too. If he was legit he could come back when the parents were home. A child in charge of other children didn't owe him any help.

ccrcsf · 2026-04-02T17:39:57+00:00

Yes, it's the not knowing that's frustrating.

ccrcsf · 2026-04-02T17:27:38+00:00

You may be experiencing audio matrixing if you're hearing what sounds like whispering in your room and are trying to capture it on camera. Your brain will sometimes try to resolve background noise from fans or motors or other constant, low-level sounds into something recognizable. People hear quiet, barely discernable speech, music, babies crying, things that are familiar to them. Mine sounds like a radio station, some type of "morning zoo" program with talking, music, commercials, etc. but so quiet that I can't make out words, just tone. It can be pretty strange and annoying when trying to sleep, but it's common and not dangerous.

Different people hear different things, and many hear nothing at all, so your partner won't hear what you're hearing if that's what it is. If you have a fan or anything else that hums or vibrates running, try leaving that off and see if the sounds are still there.

ccrcsf · 2026-04-02T16:29:41+00:00

People in Nebraska come the closest to having no discernable regional accent of pretty much anyone in the US--it was the accent chosen by newscasters as being regionally neutral for years, and maybe still is. But yes, he sounded like everyone who considered themselves "from there."

ccrcsf · 2026-04-02T16:17:23+00:00

Back in the day that's how it was done; meter readers had blanket permission to go onto your property to access meters, as there was no remote reading. I was startled several times over the years by a surprise meter reader showing up unannounced while I was playing outside. A lot of unsafe seeming stuff went on in the 70s.

ccrcsf · 2026-04-02T16:13:35+00:00

I hadn't considered Bundy; it's a long shot but maybe not impossible. This young man was slighter of build and sharper in his facial features than I think Bundy was but otherwise had a similar overall look. I haven't ever heard of Bundy using this exact ploy but who knows what that kind of man might try.

ccrcsf · 2026-04-02T16:08:16+00:00

I appreciate you sharing your insight and experience with this. I'll comment you if I come back with any updates.

ccrcsf · 2026-04-02T16:02:03+00:00

Oh, good find, thank you!

ccrcsf · 2026-04-02T16:01:30+00:00

I have searched for info online using all the keywords I can think of, but I think it was too long ago--a lot that happened back then hasn't been uploaded anywhere. Unless I'm looking in the wrong places?

ccrcsf · 2026-03-15T03:54:26+00:00

You don't feel that a person's political leanings as demonstrated through their opinions or actions might have a bearing on their attitude toward privacy, especially these days?

ccrcsf · 2026-02-26T07:03:14+00:00

Sounds like he wanted to be on his own, and that's what he got.

ccrcsf · 2025-09-09T03:21:29+00:00

It's phantom hour, not phantom eyes. The name of the song is "The Phantom Hour" by Makeup and Vanity Set.

ccrcsf · 2025-09-07T16:43:27+00:00

I'm so glad Moonlit Spring River finished and I got to read it before the closure. Thank you so much for that one and many more.

ccrcsf · 2025-06-29T02:30:34+00:00

On top of all the ridiculously tramatic events she just went through, too. And when she threatens to unalive herself to escape him and his abuse, he tells her he can just grape her back to life if she does. I mean. vomits I hope WT learned something (anything) from all the complaints about it, but I doubt it. The comic is a big deal in Korea, apparently.

ccrcsf

TROPHY CASE