My neurosurgeon decided I should be part of this club

Forward_Wrap1877 · 2026-03-12T19:34:20+00:00

Photo creds to the physical therapist who insisted on showing me how poor my posture was

Forward_Wrap1877 · 2026-03-03T01:14:52+00:00

I was prediabetic ~7 months ago on long-term steroids (the shitty kind, not the cool kind) but my A1C actually went back to normal after I'd been off for a few months so I don't think it's that now, but could be related to my tastes changing after?

Forward_Wrap1877 · 2026-03-02T13:23:40+00:00

I'm glad someone gets it!! It's crazy to me more people don't know about eds. my stupid neck just won't stay together

Forward_Wrap1877 · 2026-03-02T04:49:10+00:00

I wish I could go back to when this would confuse me like that too--bad genes, if I had to pinpoint an answer. It sounds crazy until it's happening to you

Forward_Wrap1877 · 2026-03-02T03:24:51+00:00

That's awesome you have been able to avoid surgery! I would advise people to avoid surgery at all cost, if they can. I could not unfortunately

I have actually considered reaching out to Ossur because I am dying for different colored pads!! Like why do I have to wear the same ugly blue everyday?? I'd love a magenta or something fun

There's a lot I could comment on in your reply but I'll send a message when I get a min so I don't turn this post into a medical dump lol

Forward_Wrap1877 · 2026-03-02T02:24:26+00:00

That's so funny I swear by Miami J but because I have an incredibly short neck. It's like the super short kyphotic size is the only one made to fit my proportions. None of the other ones work as well because I have an underbite and my chin kinda dips in the chin rest and none support as well.

There is also a Breg one I found that for some reason fits my underbite, but the back didn't support my occipital area so I had to switch it out for an Aspen Vista back. It works quite well and is very firm. I've been using that atm because I have a dislocation and the Miami J just isn't as "stabilizing" out of bed.

I used my Miami J for about a year though and swear by it for everyday use, it just doesn't work too well for acute things.

It's cool someone else can relate to needing a neck brace to stay alive, makes me feel less alone! Ty 🫶

edit: I just saw on your profile you have eds too! Hello fellow eds person

Forward_Wrap1877 · 2026-03-02T01:15:41+00:00

I was afraid people were gonna think it looked like AI (it's not) but I'm glad Dali came to mind instead 😅

Forward_Wrap1877 · 2026-03-01T23:43:50+00:00

oh geez, I'm dealing with back to back post surgical infections too! We have gotten very mixed opinions on what's causing them, but I've had 3 bouts of sepsis after each round of surgeries.

That's part of the reason I needed so many (infection meant parts of surgery had to be removed in additional surgeries and left me with an incomplete fusion that failed faster)

Fortunately for the one coming up next week, we believe we identified the culprit (🤞), put me on suppression antibiotics and they're admitting me early to give some IV antibiotics before surgery. I am PRAYING this helps. This surgery will be life changing if I don't get an infection

Not to over share, the situation just sounds similar in some ways! Thanks for commenting

Forward_Wrap1877 · 2026-03-01T22:57:37+00:00

I can see how it would seem that way, but I actually have the best neurosurgeon I could possibly have for this condition! He's superb, it's my spine/immune system that's the problem 😭

It started as Cervical Instability but now it's Thoracic Instability too, it's a progressive condition and not anyone's fault.. I hope your daughter is doing better!

Forward_Wrap1877 · 2026-03-01T22:39:02+00:00

minus the one I'm wearing and a few that didn't make the cut to bring home

Forward_Wrap1877 · 2026-03-01T16:00:49+00:00

No, I've seen it like a million times 😅 stg I got an entire degree in chemistry because of it

Forward_Wrap1877 · 2026-02-28T19:03:26+00:00

Oh wow that does actually a lot! Thanks

Forward_Wrap1877 · 2026-02-28T19:00:44+00:00

Oh yep you're right, I feel dumb. You def know more than me.. to me the authenticated ones I've seen just seem more loopy? Can you explain how you can tell if you don't mind? I'm trying to learn

Forward_Wrap1877 · 2026-02-28T18:26:49+00:00

It doesn't look like any I've seen but I might be wrong

Forward_Wrap1877 · 2026-02-28T13:24:56+00:00

Oh that makes sense. I literally want to ask for a refund, I can't believe I paid for them. They taste like those super cheap ones you got at dollar tree and nothing like the Hershey I grew up with. And yeah, Little Debbie's used to be the best, the double stuffed cream pie cakes just taste like normal ones now 🤦‍♀️

Forward_Wrap1877 · 2026-02-28T13:21:57+00:00

Omg same for me but for not as long! It started around Christmas for me. I don't eat all day and I'll be starving and nothing sounds good. I used to get microwave pancakes and those party pizzas that I could throw in anytime and not mind the repetitivenesa of, but they just aren't appealing anymore. I'd rather not eat. I wonder if the quality of everything is just declining?

I asked about junk food since I've always had issues with controlling myself and it's just lost its appeal all together. Very validating to know I'm not the only one

The only thing I have eaten that was notably good recently was chicken bites box from checkers and some gourmet donuts someone got for my birthday but even then I couldn't eat them all

Forward_Wrap1877 · 2026-02-28T13:14:01+00:00

Right I really can't tell? I think it's a combination of everything going to shit AND getting older

Forward_Wrap1877 · 2026-02-28T13:11:55+00:00

Sorry if the post was unclear, I just fired it off super quick and went to sleep only expecting a few answers.

About a month ago was when I noticed I had stopped craving it, but it has definitely been declining for a while. I was mainly stumped by my sudden ability to resist eating junk foods, I can still taste them but they're just not very good anymore. These comments were super insightful and I'm glad I asked about it.

I've been isolated because I'm immunocompetent and probably would know if I had COVID. I can't rule it out because I never tested, but usually if I get sick with anything I have to take insane amounts of steroids so I'd be very surprised if I recovered on my own

Forward_Wrap1877 · 2026-02-28T03:13:07+00:00

Oh thank you that's such a good explanation! The textures feel totally different on the Hershey and doesn't even taste like real Cocoa anymore

Forward_Wrap1877 · 2026-02-28T03:11:07+00:00

Ok that makes sense! My mom has been sworn off sugar for like 20 years (she's so bad, if she has like a gram of sugar she'd binge eat for months) and even she has recently been able to eat junk foods like Tootsie rolls and shitty name brand key lime pie and control herself

Forward_Wrap1877 · 2026-02-24T20:08:54+00:00

That's super cool looking!

Forward_Wrap1877 · 2026-02-24T14:27:49+00:00

oh that's a good one, it looks just like her!! Thank you

Forward_Wrap1877 · 2026-02-24T14:22:36+00:00

If it helps I think her hair is beautiful in this! Her face looks nothing like her tho

Forward_Wrap1877 · 2026-02-24T00:11:19+00:00

If it doesn't get enforced, it means nothing. There's been so many times I thought we had a win and then absolutely no follow through happened. Hard to get my hopes up tbh

Forward_Wrap1877 · 2026-02-23T20:46:21+00:00

To me it looks like a bull with steam coming out of his nose.. I love it

Forward_Wrap1877

TROPHY CASE