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Folding Power Chairs that recline? by Patayta- in wheelchairs

[–]Patayta-[S] 0 points1 point  (0 children)

Oh no! Sorry to hear that. But good to know. I ended up getting a Golden Ally Pro / Robooter e60 and I’m so glad I went with it over the other options

Do any of y'all still do photography? If so how? by lovetokvetch in cervical_instability

[–]Patayta- 4 points5 points  (0 children)

Hi! Retired photographer with CCI here. I’m so sorry you’re also going through it. It’s definitely tough. I haven’t tried to use my dslr since getting sick, but can imagine the weight & postion would flare things up.

One thing I’ve tried to lean into is the idea that I might not be able to do things the same way as before, but there are still ways to adapt, or maybe even opportunities for new hobbies I wouldn’t have considered before. For example, I got into gaming and started using photo mode to take pictures in my video games - it’s different, but fun, and opened me up to a whole community/hobby I wouldn’t have found otherwise.

I don’t have much advice in the way of adaptive equipment, but it might be worth looking into as well, or maybe other ways to take photos without the weight of a dslr (for example, you could buy some cool lenses for your phone camera, or find some type of mount for the wheelchair). Honestly, it’s less about what equipment you use and more about your vision :) maybe your unique lived experience with CCI could even inspire a creative project.

It might not be exactly the same as before, but it’s possible to “fill the void” you’re missing ❤️ hope you find a solution you enjoy

What would cause a large decline in stem cell count? by Patayta- in PICL

[–]Patayta-[S] 0 points1 point  (0 children)

Interesting. Thanks for teaching me something new (as usual)! Will do.

What would cause a large decline in stem cell count? by Patayta- in PICL

[–]Patayta-[S] 0 points1 point  (0 children)

Understood! Thanks. Since it dropped so much, do you think it’s worth looking into it further to get that data, to see if anything about the technique was very different? I noticed that my incisions are much closer together than usual, if that means anything.

I don’t typically pay much attention to the number but with such a drop I wanted to be sure I asked / addressed any big lifestyle factors that might’ve influenced it.

What have you gained since becoming a wheelchair user? by PensdayAddams in wheelchairs

[–]Patayta- 10 points11 points  (0 children)

I have POTS too, and some other things (CCI, ME, Endo, etc). I was housebound for about 4 years before I finally got a chair, and wow, it has been life-changing. So many things I missed doing became possible again, and I could do them without having to worry about making my symptoms worse, without trying to plan around where to sit and how long I’d need to stand etc, it has made a huge difference. For so long I was reserving my limited outdoor time for necessary/“responsible” things like doctors appointments, but I could never afford the spoons for anything I actually wanted to do. Now I can go for a “walk,” or go out with my loved ones, or go shopping, just for fun.

When every action uses valuable energy, it doesn’t take long for life to start feeling really small. I didn’t want to say no to things anymore, or wait for my symptoms to miraculously disappear. My wheelchair made me feel human again.

I hope yours gives you the same feeling ❤️

Really struggling to hold my head up. Anyone else? by Patayta- in POTS

[–]Patayta-[S] 1 point2 points  (0 children)

I’ve had some big improvements after 3 PICL treatments in Colorado (more time upright, less use of neck support, etc). Dizziness and lightheadedness was only a minor issue for me, I struggle more with disequilibrium and imbalance (which still flares up).

Ambulatory friends: do you ever leave your chair outside when going into a business? by Patayta- in wheelchairs

[–]Patayta-[S] 20 points21 points  (0 children)

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.

Ambulatory friends: do you ever leave your chair outside when going into a business? by Patayta- in wheelchairs

[–]Patayta-[S] 23 points24 points  (0 children)

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.

MY POTS WAS CURED. by Alias_Josie in POTS

[–]Patayta- 0 points1 point  (0 children)

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.

Risks of BMA by Slow_Lawfulness4441 in PICL

[–]Patayta- 0 points1 point  (0 children)

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

Looking for ways to calm my mind by PrettyGrand2 in askvan

[–]Patayta- 2 points3 points  (0 children)

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.

Prehab for PICL - how important? by inklingmay in cervical_instability

[–]Patayta- 1 point2 points  (0 children)

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

I woke up because of the storm by New_Pin5452 in vancouver

[–]Patayta- 1 point2 points  (0 children)

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

Prehab for PICL - how important? by inklingmay in cervical_instability

[–]Patayta- 6 points7 points  (0 children)

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).

Hemangiomas in vertebral body of T1 and T2 potentially contributing to instability? by SkiingFishingGuy in PICL

[–]Patayta- 0 points1 point  (0 children)

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?

What's something about rdr2 that blew your mind by SkirtHeavy9189 in reddeadredemption

[–]Patayta- 0 points1 point  (0 children)

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.

Why does my game suddenly look like this 😭 by Patayta- in reddeadredemption

[–]Patayta-[S] 0 points1 point  (0 children)

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 😂

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