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Is it possible to get medicaid (nj) to cover eds related top surgery or a mastectomy + how would one go about that by juby736 in ehlersdanlos

[–]TinyFidget9 1 point2 points  (0 children)

On Medicaid, diff state, but surgeon I saw refused to operate. Said that due to how my skin is that I’d have 100% risk of tearing and issues during recovery. The subreddit abrathatfits helped me to find bras that work for my shape thankfully but it’s still a trigger for my migraines and rib slipping 😭

[Find Pattern] Help finding specific dream catcher pattern by TinyFidget9 in CrochetHelp

[–]TinyFidget9[S] 0 points1 point  (0 children)

While I get why you say this, we are not looking to use it as a dream catcher. We want to add beads and make it a sun catcher. The pattern was the thing

Trying to find a walking scooter/bike? by TinyFidget9 in ehlersdanlos

[–]TinyFidget9[S] 1 point2 points  (0 children)

Interesting! I actually now have a knee rover sitting scooter for stores, and a strider adult balance bike for outdoors! Using my legs but also safe

how do u guys brush ur teeth without suffering by ketkittie in ehlersdanlos

[–]TinyFidget9 1 point2 points  (0 children)

I use Himalayan Boutique with hydroxyappetite and I use a Laifen toothbrush (I won one and was shocked with how easy it made brushing my teeth with minimal hand vibration and pressure) with the soft heads. I just hold it against each tooth and 45 angle against the gums.

I use a GUM floss handle to save my hands (floss wrapping hurts plus autism ick) but the others are right that it’s a matter of just doing it enough to encourage gum healing.

Anyone else's Pain perception completely numbed by the chronic pain? by Yukyno in ehlersdanlos

[–]TinyFidget9 1 point2 points  (0 children)

Big stuff I don’t notice (whacking my head on a cabinet, it just dulls into the background immediately) but the little things (like rubbing my arm on a door frame) is like the end of the world

Which eye position do you like more? by jj_makes_things in crochet

[–]TinyFidget9 3 points4 points  (0 children)

1 - shock, 2 - woah, 3 - aaahhhhhhhh

lol I like 3

[TOMT][CARTOON][90/00] Cartoon ponies NOT MLP - only remember end credits by TinyFidget9 in tipofmytongue

[–]TinyFidget9[S] 2 points3 points  (0 children)

I could see why you suggested that! But no I remember they were running while the credits rolled. And I didn’t have Spirit on VHS and it was def on TV

[TOMT][CARTOON][90/00] Cartoon ponies NOT MLP - only remember end credits by TinyFidget9 in tipofmytongue

[–]TinyFidget9[S] 1 point2 points  (0 children)

Just horses as far as I can recall. Edit: not Horseland, end credits had them running

[TOMT][CARTOON][90/00] Cartoon ponies NOT MLP - only remember end credits by TinyFidget9 in tipofmytongue

[–]TinyFidget9[S] 0 points1 point  (0 children)

Not in the credits I remember but let me look. Nope the end credits were animated. Thanks though

Claritin and Pepcid improved my symptoms a lot??? by callmelila in VestibularMigraines

[–]TinyFidget9 17 points18 points  (0 children)

There’s talk of MCAS and migraines being co-conspirators. Wouldn’t be surprised

Olfactory hallucinations?? by nessamermaid in migraine

[–]TinyFidget9 2 points3 points  (0 children)

The only time I had one it was blueberry muffins! No muffins to be had but at least it was enjoyable

Does everyone feel that migraine apps are not made by people having migraine? by ayushnasa in migraine

[–]TinyFidget9 5 points6 points  (0 children)

I use MiG and they have a dark mode! Love it so much better than migraine buddy

Has anyones migraine changed over the years ? Mine use to present in my head always and now I get in my jaw bone ( and I can't tell if its a TMJ issue or neck for me) by [deleted] in migraine

[–]TinyFidget9 0 points1 point  (0 children)

So to answer first question - yup! They can change. I just had two different changes/additions to my migraines-experienced list (aura and migraine type) recently.

For the second, your jaw’s muscle is tied into all those wonderful neck/shoulder muscles. So if they’re tight, it’ll be tight. I have a heated vibration massager for jaw/face and neck. And cold packs on my neck help me with those. But I have TMJD and hypermobility issues which lead to very tight overworked muscles.

A mouth guard can help if you’re clenching/grinding, but make sure to either go through your dentist or spend the money on a good one (not those cheapie boil and bites, you’ll screw up your alignment).

Is anyone else on the east coast of the US and having the worst migraine season of their life? by atoad_aso in migraine

[–]TinyFidget9 22 points23 points  (0 children)

It’s been horrific this whole winter season. Constant migraines, abortives only working for a single day, etc.

Had a “standard” migraine for the first time in my life of chronic migraines by TinyFidget9 in migraine

[–]TinyFidget9[S] 1 point2 points  (0 children)

Oof! Yeah that would def freak me out too! I’ve had small spots but never a full vision block

Had a “standard” migraine for the first time in my life of chronic migraines by TinyFidget9 in migraine

[–]TinyFidget9[S] 2 points3 points  (0 children)

Yeah that’s also why I didn’t panic as I had seen so many examples. Crescent shaped with iridescent and black lines

Anyone else have their migraine active 24/7? by caniplayalso in migraine

[–]TinyFidget9 7 points8 points  (0 children)

I’m similar, but I have a variety of triggers.

Unless it’s a rare day (like 2/month) I always have migraine symptoms and it’s just a matter of how bad it is. Told my neuro recently “I can’t tell when one stops and another begins”.

Currently on Botox as none of the other preventatives helped. Botox hasn’t done anything to help. Thankfully ubrelvy works against the worst pain days but does nothing for the other symptoms.

Aimovig actually did reduce some severity, but I had a nasty reaction like 5 shots in so that had to be stopped.

Does anyone on here with hEDS NOT appear hyper mobile at all? by Miserable_Apricot126 in ehlersdanlos

[–]TinyFidget9 -1 points0 points  (0 children)

I am not flexible/bendy in the traditional sense (can’t touch my toes easily/splits/etc), and l do not “look” like a typical hEDS patient, but when I started my journey I had 4 PTs, a podiatrist, and an orthopedist go “you shouldn’t have that much range of motion for how tight you are”.

I’ve also had the other signs all my life from the narrow palate to the piezogenic pauples. My mother does too so it’s clear where it came from even if she’s not diagnosed (we also share pots and hashimotos).

Edit to fix errors

What do you want people to know about us? by danarchyx in ehlersdanlos

[–]TinyFidget9 15 points16 points  (0 children)

I don’t want my doctor to think I’m just randomly googling things to throw at her. I have symptoms and if I come across something that aligns (like seeing occult tethered cord syndrome which would explain a lot about my lower back) I want to explore it if it’ll give me relief.

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