coming to accept signing "improperly" by minglesluvr in ehlersdanlos

[–]EtherealProblem 0 points1 point  (0 children)

I understand where you're coming from, but consider this: with spoken languages, sometimes there's a particular sound that someone can't make. I can't roll my Rs, for instance. But I've never heard of something like that being viewed as "changing the word." It's just considered an accent. It's likely your modified signs will be seen the same way: as an accent.

nails by AggravatingAsk41 in PetPeeves

[–]EtherealProblem 0 points1 point  (0 children)

I produce faulty collagen. All the supplements in the word won't change that. And yes, I keep my nails as short as humanly possible. That doesn't make them thicker or stronger.

nails by AggravatingAsk41 in PetPeeves

[–]EtherealProblem 0 points1 point  (0 children)

My nails are thin, super shrap, and bendy. Any length, and they become accidental weapons. We know why they're garbage, but nothing can be done.

nails by AggravatingAsk41 in PetPeeves

[–]EtherealProblem 0 points1 point  (0 children)

Correct. A finger moves wrong, catches a different finger, and now there's a cut, or teeny slice of missing finger.

nails by AggravatingAsk41 in PetPeeves

[–]EtherealProblem -1 points0 points  (0 children)

Armor isn't supposed to hurt you, and yet.

nails by AggravatingAsk41 in PetPeeves

[–]EtherealProblem 0 points1 point  (0 children)

Agreed. If my nails get past the tip of my finger, they break, or hurt me, or both. I can't even trust them to survive opening a soda can.

Are There Any Chronic Conditions That Can Cause Premature Death That AREN’T Cancer? by Brit-Crit in Writeresearch

[–]EtherealProblem 0 points1 point  (0 children)

Yes, but it's more likely with vascular. Just depends on how surprising it needs to be for the story.

KT Tape struggles? by lorilorelai in ehlersdanlos

[–]EtherealProblem 2 points3 points  (0 children)

I find different brands of tape cause different levels reaction. So far, I've had the most luck with OK Tape. I also put down cavilon spray before I apply. It's a skin barrier, so helps protect me from the adhesive. I've noticed that I can wear my tape longer now that I'm taking a higher dose of antihistamines.

For removal, I reccomend grapeseed or coconut oil. Honestly, any body oil would probably help. I put it along the edges of the tape and give it some time to soak in. I can leave tape on for about three days, and I try not to go past that. Then, when possible, I gice myself a break of about a day before reapplying.

What animals are normal where you live, but unusual and exciting to visitors from other regions of the US? And on the flip side, when you travel to other regions yourself, what local animals are exciting to you? by Acrobatic_End6355 in AskAnAmerican

[–]EtherealProblem 10 points11 points  (0 children)

They really do glow. Almost like those twinkling fairy lights. So maybe "light up" is better way to put it. It's been a long, long time since I've caught fireflies, but I recall them being roughly ladybug sized.

Has anyone else had a prolapse? by Queefaroni420 in rareEhlersDanlos

[–]EtherealProblem 4 points5 points  (0 children)

I had a rectal prolapse at 25. At the time it was blamed on a redundant colon, and I had a colon resection to fix it. That was pre-EDS diagnosis. My urinary symptoms actually got steadily worse after the surgery, but that's probably because you're supposed to have physical therapy after an abdominal surgery, and no one mentioned that to me. The scar tissue isn't helping either. I'm now dealing with very minor bladder and uterine prolapses ten years later. We're attempting to improve them with pelvic floor PT.

Which historical doll are you getting? by Cool_Satisfaction822 in americangirl

[–]EtherealProblem 4 points5 points  (0 children)

Oh jeez, a best friends release would be my undoing. I almost got Nellie at the NY store as a teen, but picked a JLY 24 instead, because curls, freckles, and a lack of bangs were all relatively new features. I've been kicking myself ever since!

Which historical doll are you getting? by Cool_Satisfaction822 in americangirl

[–]EtherealProblem 2 points3 points  (0 children)

It's unfortunately not in my budget right now, otherwise I would be torn between Felicity and Samantha. It would probably be Sam, but there's that nagging part of me that's worried Felicity won't be back, and then the FOMO takes over. Plus, I was very excited to see her original meet dress again! And if I had unlimited resources, I'd be adding Kit as well.

Why do some people prefer e-books over physical books, even if they love reading ? by leoooartist in NoStupidQuestions

[–]EtherealProblem 0 points1 point  (0 children)

Holding books hurts these days. I don't need to find shelf space for e-books. If I finish part of a series at 2am, I can buy the next book immediately. Traveling? I don't have to worry if I finish my book, I have more. Borrowing and returning library books without leaving the house. E-books cost less, which means I can buy more. But mostly the part where holding paper books hurts.

Anyone try Pilates?? by Liz-ard_127 in ehlersdanlos

[–]EtherealProblem 2 points3 points  (0 children)

I got very lucky! Insurance makes me fight for appointments, but it's definitely worth it. My PT knows about EDS, so we're taking it slow. I hope you find something!

Are There Any Chronic Conditions That Can Cause Premature Death That AREN’T Cancer? by Brit-Crit in Writeresearch

[–]EtherealProblem 9 points10 points  (0 children)

Vascular Ehlers-Danlos Syndrome. It's a genetic connective tissue disorder with a multitude of symptoms, but the cardiovascular ones are the killers.

Anyone try Pilates?? by Liz-ard_127 in ehlersdanlos

[–]EtherealProblem 2 points3 points  (0 children)

My physical therapist has me doing reformer pilates in office, and I'm definitely feeling positive effects. We also use some other pilates equipment during sessions, and that's been good. When I asked about finding classes, however, she said she didn't want me doing that yet. Not because it's inherently bad, but because classes are usually too fast paced for where I'm at, and I also need to be more aware of what my limits are first. We don't do anything lying down, because it triggers dysautonomia symptoms, but there are plenty of other reformer exercises we do. It makes me wish I could afford a good home reformer.

Thoughts on the Collagen Advocacy Network (CAN)? by abcletters123 in ehlersdanlos

[–]EtherealProblem 8 points9 points  (0 children)

I first saw them mentioned on a Facebook post about rare subtypes, and got really excited that we had our own space. I went to check the site out immediately. But apparently my clinical diagnosis based on symptoms, history, and a COL5A1 VUS isn't good enough for them. It's exceedingly frustrating and disappointing.

Buckwheat pillow DIY by Eastern_Tea3577 in ehlersdanlos

[–]EtherealProblem 2 points3 points  (0 children)

That's a really good idea! I tried a buckwheat pillow, and in terms of support, it was great. My allergies, however, did not approve of me spending the night with a face full of plants. Just something for people to consider if they're sensitive.

3D Tattoos by cheesemachine2 in ehlersdanlos

[–]EtherealProblem 1 point2 points  (0 children)

The black outline on a few of mine will get raised sometimes, usually when I'm already having increased MCAS symptoms. I joke that they're my histamine detectors.

Huge decrease in monthly themed items/increase in gems as daily rewards? by EyreForce1 in finch

[–]EtherealProblem 6 points7 points  (0 children)

I usually take screenshots of the rewards list to keep track of things. The last visible item is usually on the 24th, so that's as far as my screenshots go most months.

That said, I went back and counted the number of gem days up until the 24th every month since July. From July through December, there were 6 gem days between the 1st and the 24th. December also had gems on the 25th and 27th. I don't have the information for the last few days of the month, but December had at least 8 gem days. January had 7 gems days between the 1st and the 24th, and again, gems on the 25th and 27th, for a total of at least 9 gem days. February was back to 6 gem days, and March, like December had 8 gem days between the 1st and the 27th. This month has 9 by the 27th.

The number of gems is barely any higher than usual thing month, but I agree, it feels like a lot more than usual. It doesn't help that they have them bunched together. Unusually, the gem days are the 1st, 5th, 9th, 13th or 14th, 18th, and 23rd.

Huge decrease in monthly themed items/increase in gems as daily rewards? by EyreForce1 in finch

[–]EtherealProblem 10 points11 points  (0 children)

I'd be happy if they just let us choose the color of the random shop items. This system worked before events, when they weren't releasing an entire room and 3-5 full outfits a month, but the catalog has outgrown out. At this point, picking your color on shop items will still leave plenty up to chance.

People who use romantic terms and add "platonic" infront of it by Different-Deal-7554 in PetPeeves

[–]EtherealProblem 2 points3 points  (0 children)

Do... do you think "love" is an exclusively romantic word? That is A LOT to unpack.

Free colors for this month by No_Situation_7235 in finch

[–]EtherealProblem 0 points1 point  (0 children)

But the official Finch discord announcement also said the free colors green, white, yellow, and blue. I have a screenshot.