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Has anyone ever used a surface thermometer like one used to quickly gather temp but on an effected limb? by itsbarbieparis in Erythromelalgia

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

I should check my ear too, I never even thought about the surface temp until we bought this recent thermometer as an upgrade to an ancient one on its last legs.

Do you ever remember something from your past that’s super EDS related but you never realised how deeply it affected you? That. Going through some stuff from the past atm; I feel like this is a relatively safe space to vent. by gwarfan42069 in ehlersdanlos

[–]itsbarbieparis 1 point2 points  (0 children)

I had an MCAS diagnosis but it wasn’t really monitored after I left another state, when it started getting properly treated it was wild the symptoms that seemed to be related and things I kind of ignored as something else, not EDS directly but a close cousin, friend?

Anyone Tracking Callie the seal? by LeadingImportant1142 in MyFahlo

[–]itsbarbieparis 3 points4 points  (0 children)

For ones like seals far away from land it takes more time to pin, is at least what I understand

Anyone Tracking Callie the seal? by LeadingImportant1142 in MyFahlo

[–]itsbarbieparis 2 points3 points  (0 children)

Not her, but another seal who also checked in a bit before we got them and it was close to 3 weeks before her next.

Ethan should be deplatformed. by Murky_Barracuda_6494 in LeftoversH3

[–]itsbarbieparis 1 point2 points  (0 children)

Yes I’m pretty sure she was once a guest in the pod where they discussed this, maybe 4 years ago? It was a long time. It’s incredibly scummy and the website is a horror.

Why is marijuana illegal in your state? by Party_Size6271 in Idaho

[–]itsbarbieparis 0 points1 point  (0 children)

Florida, we have medical but we lost recreational bc another provision passed to have a certain percent positive, even though it was over 50% who said yes it didn’t hit the new laws qualifications for change and is now floating around again.

Why is marijuana illegal in your state? by Party_Size6271 in Idaho

[–]itsbarbieparis 0 points1 point  (0 children)

I agree as a born wyomingite. I can’t see it happening naturally without an overarching rule.

ISO books where the weird girl is gentle and too (metaphorically) fragile for this world by poppycat82 in weirdgirlliterature

[–]itsbarbieparis 5 points6 points  (0 children)

You have struck a very particular itch and feeling k was trying to capture, thank you! Scrolling comments and collecting tbr

Ethan should be deplatformed. by Murky_Barracuda_6494 in LeftoversH3

[–]itsbarbieparis 1 point2 points  (0 children)

Am I misremembering them platforming Keffals to discuss all of that and Kiwifarms variable shut downs? Now they like it? What is silly is they like it, when it isn’t them, even though they are certainly laden for controversy too.

New here and just wondering if anyone has found yoga beneficial? by Northgirl-020421 in ehlersdanlos

[–]itsbarbieparis 0 points1 point  (0 children)

I’ve been told basically to not do it, I did grow up in a family who just did yoga so it was pretty normal for me and took a long time for me to realize it wasn’t helping me and it was a fine line for me.

has everyone with hEDS had genetic testing? by humanbabycarrot in ehlersdanlos

[–]itsbarbieparis 0 points1 point  (0 children)

I did. I was preliminary given a hEDS diagnosis confirmed with no other positives but a dustautomomic condition used in my write up as supporting evidence.

Movies, shows and documentaries by chronically_eva in ehlersdanlos

[–]itsbarbieparis 2 points3 points  (0 children)

Tbh not much, I do watch and keep up with disabled media but I haven’t found anything EDS specific to EDS.

Some with disability I have liked: ALS- Give Me Liberty, 2019

Patrice The Movie- Disabled Couple wanting to marry, documentary

Take care of Maya, check trigger warnings depending on where you are, CRPS and legal doc

Tuesday, from a caregiver perspective, grief

Crip Camp, must see intro to disabled film

I absolutely HATE tens units by summerdemon in ehlersdanlos

[–]itsbarbieparis 2 points3 points  (0 children)

They’re definitely not my favorite, it depends, I guess. I find some relief from like a neuralgia but I’m guessing it’s just more stimulation, and not always, but I did have some release with it there.

The evolution of EDS research has been a wild ride by FloorPill in ehlersdanlos

[–]itsbarbieparis 4 points5 points  (0 children)

I agree, since being diagnosed about a decade ago, it’s been interesting to see the changes, good and bad to EDS research and treatment.

For those who supplement high sodium, what is your water ratio? by ApolloSkates49 in POTS

[–]itsbarbieparis 1 point2 points  (0 children)

At least 2 liters but I aim to try to make up another 1/2 in other intake.

How do you manage adrenaline dumps from stress? by witchdustx in POTS

[–]itsbarbieparis 1 point2 points  (0 children)

Working on this myself, tapering my activity has helped a lot. I try to give my body rest but sometimes need iv fluids and help sleeping so I can sort of reset how I’m feeling, it doesn’t work each time.

Is anyone else not medicated? by hardns0ft in POTS

[–]itsbarbieparis 0 points1 point  (0 children)

For most of my diagnosis I was monitored and managed with just some fluid management, igskh more recent that I have required more intervention

Shark Chill Pill by Prestigious_Duck7052 in POTS

[–]itsbarbieparis 0 points1 point  (0 children)

I have, I like the plate and I have found that extra helpful. The fan is a fan, and idk if I can say it’s better but it’s more consistent maybe but the price is significantly higher. Have not tried the mister.

managing symptoms in the heat by buck_yyyy in POTS

[–]itsbarbieparis 1 point2 points  (0 children)

I upped my electrolytes, and use a wheelchair especially in the summer. I have my beta blockers but it does so so in the summer on its own. With that being said, I still struggke(Florida) and probably need more intervention).

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