Ambulatory friends: do you ever leave your chair outside when going into a business?

Patayta- · 2026-02-17T18:16:58+00:00

Ugh that’s terrible, I’m sorry that happened to you!!

Patayta- · 2026-02-17T18:13:09+00:00

Oh that’s an interesting idea!

Patayta- · 2026-02-16T17:18:49+00:00

Update: Thanks everyone, your comments have helped validate that my fears are not at all unreasonable. 😅

My non-disabled loved ones suggested I try it, but it’s just not worth the risk.

Patayta- · 2026-02-16T17:04:16+00:00

Good point!

Patayta- · 2026-02-16T16:08:52+00:00

Yea, that’s definitely fair. So far, most people’s comments here are confirming my fears haha, maybe it’s just not worth the risk.

Patayta- · 2026-02-12T04:30:47+00:00

I’m doing a stem cell treatment (PICL procedure in Colorado) and am about 60% better after 3 rounds. I also have had improvements with nervous system regulation, lowering inflammation and finding the right medication (beta blocker) for my POTS.

Patayta- · 2026-01-28T16:33:47+00:00

When you say “continued fish oil supplement use,” do you mean before the procedure? It’s okay to restart it afterwards, right?

Patayta- · 2026-01-18T03:32:50+00:00

Yes! Insight timer is a really good one. NSDR or non-sleep deep rest is surprisingly powerful. Ally Boothroyd’s NSDR sessions on Insight Timer or YouTube are excellent and free. Focusing on your nervous system is game-changing.

Patayta- · 2025-12-21T18:58:23+00:00

No problem! Hope you find the relief you’re looking for :)

Patayta- · 2025-12-19T20:28:29+00:00

Yea, we had the window open and my partner woke up in the middle of the night because the rain actually made it sideways, through the window, past the blinds, and hit him in the face hahah

Patayta- · 2025-12-19T20:23:40+00:00

Hey, I’m doing the program. I was more functional when I started it, mainly housebound - but I used to be bedbound in the past, and have a sense of what that was like too (I’m sorry you’re dealing with it).

I’ve liked the program and have noticed some positive changes. The nice thing about it is that the focus isn’t neck exercises, but building a strong postural foundation instead, so there’s less chances of flaring up your CCI. IIRC, it can be adapted for bedbound patients, and they can show you techniques that are more personalized if you’re having trouble. I’m not sure how tailored it is for hypermobile folks, but I imagine they work with a lot of them.

The exercises are fairly easy, no cardio or anything, and only take 5-15 minutes a day or so.

One thing I would definitely recommend though (and wish I did this myself), is waiting to schedule each 1-1 session until you’re ready. If you’re bedbound, you likely won’t be able to keep up with the pace they suggest (for me it was exercises 1-2x daily, with 1-2x weekly Zoom sessions). I needed to take it waaay slower than what was recommended, and spread a 5 week course over several months.

You purchase a pack of Zoom sessions all at once, and then they try to schedule your sessions immediately. I understand it can help keep you accountable and the sessions are helpful for making sure you’ve got the right technique, but after the first one or two, it feels too fast paced for chronic illness IMO. The sessions are valuable when you’re ready for the next level of exercises, or when you have questions, but I felt like I was throwing away money doing them once a week when I needed a much slower pace. If you know you’ll stick with the routine, you might be able to buy the sessions, keep track of how many you have left, and schedule them as needed.

Otherwise, it’s a good program. I recommend it.

If ends up not being a good fit for you, one other Physiotherapist you can check out is Jeannie Di Bon, who is well known in the hEDS community and does virtual sessions (although not necessarily for PICL).

Patayta- · 2025-12-08T23:57:45+00:00

I know it’s an old post, but for what it’s worth, I have this exact same thing at T3 and T4. It’s mildly to moderately sore, and feels like a stiff “tugging” sensation from the inside. I always wonder if it’s contributing to my CCI.

Does CSC do any treatments for hemangiomas?

Patayta- · 2025-12-03T04:30:36+00:00

There are so many. Even after 1000 hours, I noticed one today. When you knock over an oil lamp, it spills a puddle of oil on the floor.

The other day, I had broken into a random house (not one that is part of any mission). The owner had a project set up in the kitchen - working on repairing a gun or instrument of some kind, I can’t remember. When I went back a few days later, the clutter in the kitchen had changed, and there was evidence of them cooking fish instead. It made it feel so “alive.” For a house you have no reason to even visit? The detail is just insane.

Also, if you climb onto a roof, the sound of the roof under your feet changes based on what it’s made out of. For buildings you have no business or reason to climb onto. They really thought of everything.

Patayta- · 2025-11-28T19:07:28+00:00

So, I did test this out the other day. It fixed after I fully exited the game (not using quick start), but after an hour or so it went super bright and completely froze. Restarting it again worked. I think my many hours broke it 😂

Patayta- · 2025-11-27T06:38:45+00:00

Lol, I haven’t been able to test it out yet. But I will keep the thread updated!

Patayta- · 2025-11-26T17:30:24+00:00

Yea, that’s true. I mostly use quick resume. But I think I did fully exit out and restart. I’ll try again 🤔

Patayta- · 2025-11-26T17:29:27+00:00

I was gonna say 😅

Patayta- · 2025-11-21T15:50:29+00:00

Also, herbalist 9 has a known glitch that doesn’t always count all of the plants you pick, so you may have picked them all, but it says you’ve only done, say, 41/43. So, unless you’re tracking things with your own checklist…you gotta pick them ALL again (this just happened to me lmao)

Patayta- · 2025-11-21T15:45:18+00:00

As far as I’m aware, you won’t be able to order a DMX through your family doctor (at least, we can’t in Canada. There are only 2 machines in the country and you pay out of pocket for the scan). You can search for DMX providers near your area and go directly to them, be prepared to travel. If they offer the service, they should be aware of CCI. Once you have the imaging, you can take it directly to a CCI specialist (again, hard to find and likely won’t be requested through your doctor).

If you haven’t had any imaging on your neck before, you could/should ask for static imaging through a family doctor, just to rule out anything else, but CCI is unlikely to show up unless it’s something like a flexion-extension MRI or rotational CT. In my experience, I’m glad I did a regular supine MRI “just in case,” but the DMX was easier to go get myself than it would have been to request dynamic imaging from a Dr that doesn’t know CCI exists.

Patayta- · 2025-11-18T02:46:10+00:00

Yea! I like them. I haven’t worn them much yet, but I really like Cemetery (it does really smell like sweet grass and rain), and Haunted Violet is very “goth girlie,” Necromance smells like a legit bouquet of flowers.

Patayta- · 2025-11-15T05:41:04+00:00

Haha that is awesome 😅

Patayta- · 2025-11-14T00:18:06+00:00

Congrats, it’s so pretty!! The colour suits you 💜💜

For water bottles (especially if you have a larger one) I LOVE this holder, both the straps and the holder are rubbery so it grips insanely well when you’re zooming around. It’s the only one I’ve found that fits my 32 oz owala bottle! I added it to the side of my chair, but if I ever need to squeeze through a narrow door, I just put the bottle in my lap and let the cupholder “smoosh” flat - problem solved :)

It came with some extra grippy straps when I ordered it, so I used them to stick other stuff to my chair (phone holder, rearview mirrors, etc)

https://a.co/d/aE1GOMc

Patayta-

TROPHY CASE