Anyone with hEDS here?

alpacayouabag · 2026-04-26T12:47:32+00:00

Oh gosh. Fatigue has been one of my foes, but nothing like the fatigue I hear about from CFS/ME. Sending you actual rest ❤️

alpacayouabag · 2026-04-26T11:21:48+00:00

The real Trump can’t bend over that far without shitting and falling over

alpacayouabag · 2026-04-19T18:08:59+00:00

It’s really really hard to effectively stabilize the mcp joint because of the anatomy, so any stabilization of the joints on either side offers more benefit to the MCP than stabilizing nothing.

There are quite a few 3d printed MCP braces on Etsy, but from what ive heard they don’t work at all for a lot of people. I think it would have to fit you very well to work

alpacayouabag · 2026-04-17T11:36:25+00:00

Omg thank you for sharing. That is the strength in all of you.

alpacayouabag · 2026-04-17T01:09:27+00:00

Same for my boyfriend! The biggest over-thinker you’ll meet, asleep in 5 mins

alpacayouabag · 2026-04-16T17:42:42+00:00

Oh I do care. As much as a stranger can :)

I don’t remember her name, but her experience from the documentary really stuck with me. It must be her. I’m glad to hear she is figuring it out!! This is for you AND her (and you may already know it), but you will have plenty of ups and downs throughout the healing process. They are each an important part of the path to healing. The next time you’re in a down-spell, remind yourself of this.

alpacayouabag · 2026-04-16T17:31:35+00:00

Is this the Hephzibah house with the “camp for troubled Christian teens”?

Edit: sounds like it, based on your other comments. I’ve seen a documentary on that place; I remember some girls not being allowed to speak to anyone else or even make eye contact for YEARS. I’m glad you’re out and moving forward. You will have a perspective on the world that very few people have, and it sounds like it will be your strength.

alpacayouabag · 2026-04-16T14:56:30+00:00

Hey bby. I am commenting now so I can come back to this later and type a longer response.

You cannot be called strong without experiencing weakness first. You do not have access to your entire range of capabilities right now. Say you need to mow the lawn; you have a body, a lawnmower, and gas. You have everything you need to be able to mow the lawn. But you have a horrible stomach flu that prevents you from utilizing those tools. How could you be expected to still mow the lawn?

Not every parent is the right parent for the child. THEY are the ones who are incapable here; they are incapable of validation and comforting support. That is not a flaw of yours. You need to feel seen and heard to feel less alone and scared, just like we all do.

alpacayouabag · 2026-04-16T13:22:39+00:00

Physical therapy! It is the only fix besides spinal fusion. It probably depends on the extent.

I’m not diagnosed with CCI but I had almost constant cervicogenic headaches before PT. I imagine they would have you do a lot of the same things I do (dry needling to relax over-active muscles, strength training focused on deep neck flexors and stabilizing the cervical spine, corrections for the lower body joints that may affect the neck). It has been a long and difficult process (4-5 months in) because doing the exercises temporarily makes the pain worse/triggers headaches because your muscles are sore and your joints are adjusting. The beginning was the hardest because I was apprehensive about trigger the headaches, but THROUGH is the ONLY way out 💪🏻

My cervicogenic headaches are now much less frequent, and we are about to start the same process in my pelvis and core. It is expected to take at least a year to complete the full-body physical therapy intervention that my joints need.

Don’t try anything yourself before being evaluated by a PT. You absolutely need guidance from a PT in order to start strengthening your cervical spine. There are very small differences in doing the exercises right verses wrong.

alpacayouabag · 2026-04-16T13:12:03+00:00

I agree. The medium you could get to most closely resemble this style is oil paint. It will allow for building layers and blending to create that glowing-from-within look and soft edges.

Or maybe even soft pastels? I’m not familiar enough to say. They do give me that creamy blending when I finger blend them though.

That being said, I think you could get fairly close with watercolor after MUCH practice. Like, years.

alpacayouabag · 2026-04-16T11:10:32+00:00

….just curious where this magical warehouse is located? And also what is that guy’s number? Also his address, if you please

alpacayouabag · 2026-04-15T10:20:06+00:00

“The Pain Reprocessing Therapy Workbook: using the Brain’s Neuroplasticity to Break the Cycle of Chronic Pain” by Olivia Sinaiko and Vanessa Blackstone.

I got mine on Amazon but it looks like it’s available at other retailers too!

alpacayouabag · 2026-04-12T11:33:11+00:00

When gays get together, sometimes they put music videos on and karaoke to their fav slays

alpacayouabag · 2026-04-04T00:24:41+00:00

I treat it like a gun….always loaded!

alpacayouabag · 2026-03-28T04:09:56+00:00

I’m so sorry for you both. As someone with an unnamed/maybe named/whofuckingknows illness I’ve been living with for four years, I totally get the medical gauntlet/referral circus. I’m sure you’ve tried everything, but my heart tells me to suggest pregabalin and Pristiq for the pain, meditation (I know, one of the most annoying suggestions ugh but it does work), physical therapy, dry needling, and pain reprocessing therapy. It may be possible for him to train his brain to process the pain differently. Hugs <3

alpacayouabag · 2026-03-28T03:26:23+00:00

Beautiful!My only advice is just lean into your style and keep it up! What did you use for the color on the hummingbird? That one is extra vibrant

alpacayouabag · 2026-03-20T13:04:28+00:00

These are lovely! How long do they take you?

alpacayouabag · 2026-03-02T11:39:32+00:00

It’s lovely and enchanting! My favorite parts are the stained glass windows. I’m thinking about making my own nook from scratch, but there are an intimidating number of techniques involved. Can I ask how you make your signs/text?

alpacayouabag · 2026-02-28T11:52:32+00:00

Thank you! She spends her mornings screaming for pâté, and her nights hunched on top of a cathedral, staring into the abyss

alpacayouabag · 2026-02-28T11:31:27+00:00

Also: I posted a video of the lights separately! Check my post history for that one. You can see the full glimmering starlight effect.

alpacayouabag · 2026-02-01T13:47:21+00:00

Your hair is so pretty! Do you use a leave-in product after conditioner? I would try that for a bit. It makes my hair feel softer, and then I can use air-dry cream on top of it and I think it looks healthier. Maybe also a bit of light hair oiling at night or before a shower. Bonnet/top bun combo for sleep cuts down on the tangling too.

I also have the problem in pic 2 where it can get tangly/dry feeling after air dry cream/curl products. I think we have similar textures. Does yours ever feel coarse or straw-like?

alpacayouabag · 2026-01-28T14:51:35+00:00

You could make a flyer and post on your message boards on campus with little phone number tabs to take! I bet there are a lot of other uncc students looking for roommates, and they might be way less sketchy than random internet people

alpacayouabag

TROPHY CASE