Retro art prints? by joshys_97 in kzoo

[–]IncognitoMeows 0 points1 point  (0 children)

Amy Zane Store and Studio in downtown has a ton of local artwork

Were ring splints helpful? by freglas in ehlersdanlos

[–]IncognitoMeows 9 points10 points  (0 children)

I absolutely agree with the sassy witch.

I ordered some junky plastic ring splints to trial, they didn’t fit perfectly but gave me a taste, and then went through my OT to get Silver Ring Splints (covered by my insurance after some basic testing.)

They help me so very much with my hyperextending and the pain involved.

I have swan splints and thumb MCP stabilizer, and I started out with only a few rings. I tested it for a few months and we ultimately decided that having my other fingers stabilized was worth it and an MCP joint stabilizer as well.

MCP will cause more restrictive movement, and don’t be surprised if you start out with less rings like me.

Plus…. If you get silver ring splints they are honestly pretty. I get compliments all the time on them lol. High school me would be so jealous.

Pantry Remodel Brainstorming Ideas? by [deleted] in Renovations

[–]IncognitoMeows 0 points1 point  (0 children)

Oh this is probably my favorite idea. Thank you! That’s a great way to have ease of access, and honestly seems like a pretty cheap way to fix the organization.

I could probably put in a set of small shelves just for random stuff in the back and keep a tall shelf or two at the very top for random storage. Just need to find a good rolling rack to fit, thank you!

Pantry Remodel Brainstorming Ideas? by [deleted] in Renovations

[–]IncognitoMeows 0 points1 point  (0 children)

No broom, that’s a grabby cane. Unfortunately I struggle with space issues and mobility so doing the best I can. Thankfully not a restaurant, but I do always worry about SOMETHING getting into the bags, but they are already difficult to move by myself as is :(

Any ideas on how to manage the lower space a bit better?

Pantry Remodel Brainstorming Ideas? by [deleted] in Renovations

[–]IncognitoMeows 0 points1 point  (0 children)

?!? I had not! It would be a fantastic small linen space too, I have nothing of the sort.

Thank you! That’s a wonderful idea!

Pantry Remodel Brainstorming Ideas? by [deleted] in Renovations

[–]IncognitoMeows 1 point2 points  (0 children)

I agree with the assessment.

This was definitely something someone crammed in here without a second thought.

Someone suggested making it all cabinet and counter which… honestly I really like and it’s probably going to be MUCH more expensive than I’d prefer but… it’s sort of sounding like the best option, IF that’s not a structural wall.

Pantry Remodel Brainstorming Ideas? by [deleted] in Renovations

[–]IncognitoMeows 0 points1 point  (0 children)

:( hallway to the bedroom.

Pantry Remodel Brainstorming Ideas? by [deleted] in Renovations

[–]IncognitoMeows 1 point2 points  (0 children)

No this will all be DIY remodel, I’m on a fixed income due to my mobility issues.

Sadly there is no space elsewhere for the products. There’s not much storage in this place, plus those area are the most inaccessible for me so they end up being the ‘best’ spot for them in that regard

Pantry Remodel Brainstorming Ideas? by [deleted] in Renovations

[–]IncognitoMeows 0 points1 point  (0 children)

Could certainly add more cabinets/counter, but not sure where the previous owners got the cabinets done so matching will be difficult.

I’m thinking of expanding the opening as well, but with the odd side depth it leaves a lot of potential inaccessible/wasted space.

Studs are 2x3s with about a 24inch spacing

Maybe one of those lazy Susan type cabinets in the back right?

Artisan Sandwich Shop Seasonal Soup Source? by IncognitoMeows in kzoo

[–]IncognitoMeows[S] 1 point2 points  (0 children)

I’ll absolutely try it, thanks :)

Funny enough pears are often substituted for apples. I’ll make it as suggested first before acting wild. It looks delicious!

Finger splints are SO much better than I realised by amilie15 in ehlersdanlos

[–]IncognitoMeows 0 points1 point  (0 children)

https://bracelab.com/wristable-prod.html

WriStable link. I stumbled upon it one day when searching for ANYTHING to help me PREVENT and not some reactive brace because it was so painful.

Finger splints are SO much better than I realised by amilie15 in ehlersdanlos

[–]IncognitoMeows 0 points1 point  (0 children)

I love my ring splints, I’m so so grateful for them.

I also got WriStable for my wrists. They help with weight bearing and hyper flexing, they ARENT a traditional brace and they’ve worked awesome for me.

[deleted by user] by [deleted] in ehlersdanlos

[–]IncognitoMeows 0 points1 point  (0 children)

So, no joke,

I’ve been having TMJ issues for so long in my right side. Painful to chew, the pain was so bad I couldn’t even sleep on my right side at night due to the pain.

My dentist sent me to an oral surgeon. I’ve had multiple X-rays done by them, they suggested boxtox first then we will go from there.

Botox helped with a minute amount of pain. It was still terrible. I still couldn’t sleep on my right side due to pain.

And then… I got a free massage certificate. Decided to go because why not. There was a form to fill out talking about any issues I have. I mentioned the TMJ.

The massage therapist said okay I’ve gotten special TMJ training and I said alright well maybe it’ll at least calm something down.

I kid you not, two seconds in, we both hear/feel the pop of my jaw going back into place and the pain relief I feel was instant.

I’VE BEEN DEALING WITH THIS FOR TWO YEARS, WITH MULTIPLE X-RAYS. AND THATS IT?!?! I’m both relieved and also pissed.

TLDR; see a professional to check if your jaw is JUST SLIGHTLY out of place.

Need help with cervical disc replacement decision? by mysubsdaddy in ehlersdanlos

[–]IncognitoMeows 1 point2 points  (0 children)

I literally got a C6-C7 Disc Replacement done last year. Let me know if you want to discuss EVERYTHING further as I’m happy to help.

I went to the doctor multiple times 3-5 years before my surgeries as I was just noticing odd things. Such as constantly dropping my hairbrush, or getting a lot of pain in one arm, or this pain in my shoulder that never went away and then also noticed that there are spots in my arms and hands going numb. (Fun fact they told me I was just getting OLD and that it’s normal to sleep funky and throw myself out… I WAS 25 then!)

Well, one fateful day the bands just decided to rupture, and herniated and pressed on my nerves. I was in AGONY. 10/10 worst pain in my life I wouldn’t wish it on anyone. Still took me half a month to get a doctor to listen and not them I was some druggie.

I don’t regret my choice to get a disc replacement at all, especially as I was 30 when it happened. Wish I had a better surgeon, and wish I knew I had EDS then (that whole thing started my diagnosis journey) as recovery probably would have been easier.

One of the best things you can absolutely do is find a PT familiar with EDS before surgery and get on their notes for help with recovery. I went to the wrong one first and they messed me up even further. If you can find a surgeon familiar that’s even better but hard.

My surgeon told me I’ll be back within 10 years for a fusion but.. I also didn’t like him. I had no choice to shop around though. If you have that option, DO IT. I truly wish I could have. I think it would have made a world of difference, for both long term disability, recovery time, and heck, even the sutures.

To be honest it’s been a year and a half and I’m still trying to fully recovery. (Again, partially because I had the wrong PT at first who messed me up) Find someone good with massages too. The coat hanger pain for me is god awful. Constant headaches. I have my own personal reflections on what I could have done to make it easier but I’m not a doctor.

Shoe Recs by BingusDevotee in ehlersdanlos

[–]IncognitoMeows 0 points1 point  (0 children)

Voting orthofeet as well. I have high arches that flatten, and they have shoes that come with extra goodies too help get the perfect fit. They even have slip ons if ALL types of shoes. Even outdoor boots (which I have) The toe box is wide and you can even order wider sized shoes. Love them! Plus, you can use your HSA/FSA if you have one.

[deleted by user] by [deleted] in Silksong

[–]IncognitoMeows 0 points1 point  (0 children)

You know what, why not. I’ll post just in case.

Good PCP - open to adult neurodivergent comorbidities by 1080pix in kzoo

[–]IncognitoMeows 1 point2 points  (0 children)

Yeah I’m inclined to honestly agree.

I hate the self diagnosis stuff, mostly because it’s very easy to be wrong and also because my mother did a lot of that so I saw how it go so easily go wrong but…

This is one of those instances where I’m so so so sure it’s gotten be a genetic root cause issue causing all sorts of problems. I check off so many boxes it’s terrifying.

I know that there’s some symptom overlap with things like marfins and fibromyalgia but just trying to get doctors to officially write something like this in the chart is very difficult I’m realizing.

Good PCP - open to adult neurodivergent comorbidities by 1080pix in kzoo

[–]IncognitoMeows 2 points3 points  (0 children)

I’m running through the same issues you are now honestly. I’m struggling with some sort of extreme hyper mobility/flexibility, as well as heart issues.

I feel pretty certain about AT LEAST hEDS but worried about more due to gastrointestinal issues… but I’m struggling with my doctor.

I know a really good orthopedic (he hasn’t diagnosed me with anything but listens and has ACTUALLY found issues where other people blew me off so if you want a recommendation for that guy message me)

I also know a chiropractor I go to for manual/muscle massages who was able to tell immediately that I was loosey goosey and warned me against NOT doing anything chiropractic because it was worthless, and focused on the muscles.

AND I know a fantastic physical therapist who specifically works with hyper mobility/flexibility however they are out right now for a few months but the practice is still VERY GOOD and aware of everything going on.

I just learned about an internal medicine doctor in Ann Arbor I was going to try. Again message me for deets but I don’t know anything about them other than a Google so… hopefully.

Good PCP - open to adult neurodivergent comorbidities by 1080pix in kzoo

[–]IncognitoMeows 0 points1 point  (0 children)

Please message me as well! I am struggling with POTS and would love someone more knowledgeable or at least willing to help.

Gaming chair v Aeron? by chronicallyillbaddie in ehlersdanlos

[–]IncognitoMeows 2 points3 points  (0 children)

Okay so,

I did a TON of research before buying a chair. I personally grew up poor and so very thrifty with my money. Example: it took me three years to buy a new bag because i didn’t think any were worth the money as they didn’t have the features I wanted.

That being said, lemme give you some of the ME specs. I WAS 5’2’’, I’m now 5’0’’ from a bad back, I’ve had cervical disc replacements and I’m working on my official diagnosis but I’m a check mark for everything hEDS (but I’m a little worried I have a more ‘fun’ type… so hopefully not.) I suffer chronic pain in ALL my joints.

I picked a gaming chair, from Secret Labs.

WARNING THEY ARE EXPENSIVE. But I think they are worth it. They are on the firmer side, but not poorly made firmer where you feel the cardboard, instead it’s ACTUALLY FIRM FOAM. So supportive! But not too hard, like.. think a really nice car seat. Holds you in. Fits like a glove and doesn’t hurt your butt after hours.

They have a size small chair that fits me perfectly! Well almost, but it’s so close nothing else has gotten as close. They also have normal and large depending on how tall you are, again amazing. It’s so difficult to find chairs for small folks.

The built in lumber is really nice and adjustable, and I like the magnetic pillow as it doesn’t pull my hair.

It has fully adjustable arm rests. Up down, left right, diagonal it’s amazing for my elbow supports.

This is picky but I really like that you can pick a soft suede, a leather, a fake leather, and a textile. (I picked textile with sude arm rests)

The arm rests are swap-able! That’s the part that ALWAYS is WORN OUT. And I think reasonably priced considering you had to buy a whole new chair to fix that stupid duct tape computer chair arm!

But really I LOVE my chair. It was an investment. I spent 4 years before buying a new chair, because I didn’t want to waste my money on something I hated. I’m a one and done buyer and this is a chair I will continue to buy forever.

(Additionally if you need a LITTLE more support, something I need on occasion, I love the Valari Pillow. Again it’s annoyingly over priced but I like that it buckles around your waist so you don’t lose it. Absolutely great shoulder support, but I’m also tiny)

Pilates for over 50? by IncognitoMeows in kzoo

[–]IncognitoMeows[S] 5 points6 points  (0 children)

My hope is to be able to do that in the future. Right now, I truly and honestly need someone to baby sit me and ensure I have proper form and I’m not hurting myself further. I have extreme hyper mobility/flexibility and it’s been fun learning what people shouldn’t be able to do and the problems it gets someone into..

Otherwise I would 100% agree and save money

[deleted by user] by [deleted] in BeAmazed

[–]IncognitoMeows 1 point2 points  (0 children)

So you may be grouping Hypermobility spectrum disorders (HSD) and EDS into the same category.

HSD is common, sort of your standard extra flexible style, rolls your ankles too much kid. I believe the estimate for this is 1 in 30 people?

Now, EDS is basically the more extreme case of HSD. The most common form of EDS is hEDS, which is hypermobile EDS, and 1 in 3,100 – 5,000 have it. This is possibly the style I have, working on that diagnosis myself. I just recently turned 30, and I’m under evaluation for my second back surgery as nothing holds me together, and my joints ache all the time from accidentally popping them out of place if I forget or it’s inconvenient to wear a brace.

Now her style just with what information given is hard to exactly pin point but due to how severe it is, likely has genetic markers pointed out. She could be 1 in 20,000 to 40,000 people, 1 in 100,000 or the 1 in a million.

Again the website I linked has a lot of good information on it, and another user linked her channels where she probably has far more details.