IHateThisPart @IHateThisPart__
All the Angsty Bits\| C19, 11/20 → LC \| Herniated Discs, 11/21 \| Cauda Equina emerg surgery, 6/22 \| POTS, 10/22 \| hEDS, 1/24 \| “Too young for that,” Always Joined April 2022-
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Can you be billed as both “Office/Outpatient New High” and “Office/Outpatient Established Mod” for the same doctor visit? (For context, I saw the same dr. 3 months ago) #MedTwitter #Health #Insurance #DisabilityTwitter
Im not denying that these can help ofc...but between drinking & peeing, planning regular (salty) meals, wearing uncomfortable stockings, feeling guilty for lying down & feeling awful being upright, plus ALL THE SYMPTOMS OF POTS, what the hell else have we got time to do??
Hello, I unfortunately can’t “positive thinking” my way out of faulty collagen. Sincerely, I have ehlers-danlos syndrome
I’m amazed at the things I find sexy now (insurance injection approval letters) #ChronicPain #NEISvoid
Sore throats from dehydration, right? I can get them daily, usually midday. Has anyone with #POTS experienced this? tbh, feels a little like adding insult to injury… anything to remedy (aside from drinking more because I am trying)?
People at work: Well don’t stress yourself too much doing X (work task) Me: Um, I *really* don’t think you understand…. #NEISvoid #LongCovid #CovidIsAirborne #CovidIsntOver
I have been so spoiled by virtual care… I had an in-person appointment at 10 AM today. It took me about 45 mins to eat breakfast and get ready. Then the drive plus getting in the building and finding the clinic took 1 hour and 15 minutes. The waiting plus the actual appointment…
Uh, how do ya’ll handle summons for jury duty? Request for excusal? Ask for accommodations? And what is this doctor’s note they’re talking about? #POTS #hEDS #EDS #LongCovid #ChronicPain #chronicillness #DisabilityTwitter #NEISvoid
it’s weird to have an illness that didn’t exist 4 years ago that already has an awareness day bc it’s so rampant and so many doctors and people deny it’s existence and tell you to drink more water and eat more salt and sleep better. #LonCovidAwarenesDay
Today is #LongCovidAwarenessDay. I'm a Stanford-trained physician, but bc of #LongCovid I haven't been able to work as a doctor for three years and four days. There are NO validated treatments. No cure. Patients are trial-and-erroring their way through. We need answers.
Despite a lot of my aggressive migraine-y symptoms fading and this being the best i’ve physically felt in a week, I still don’t feel good… Also, I’d like my energy back, plz kthnx. #NEISvoid #LongCovid
THIS 100%. I felt crazy sharing (and emphasizing) this as one of my symptoms—that is, when I finally realized I was making mistakes. And it was such a big part of me. /sends warm hugs @healingfromlc
THIS 100%. I felt crazy sharing (and emphasizing) this as one of my symptoms—that is, when I finally realized I was making mistakes. And it was such a big part of me. /sends warm hugs @healingfromlc
Sending love on Rare Disease Day to anyone out there living with a rare disease 💕
please b00st
Hey hip subluxation homies. How do you fix that feeling? Is there some special trick? #hEDS #EDS #HSD #hypermobile #NEISvoid #chronicpain
"HELP ME WITH SOMETHING ELSE!" "SPEAK TO THE PHARMACY STAFF!"
THIS 👇🏻👇🏻
As I keep track of my symptoms/pain, I need to make a distinction (this is an exact quote): “Reallly annoying stabbing in lower left back area. Not the most painful ever but really effin annoying me.” I need it to be understood that while I’m not dying from it… #chronicpain
Hocus Pocus Alimagocu.. @AriG956
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Ultiverse閳库槄绗.. @FreidaRosa57563
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My friend gave me hundreds of dollars worth of craft supplies, including a Cricut machine, and I think I'm going to disappear from here for a little while and come back with some crafts because...y'all my wrists won't ache anymore from cutting small projects. 🥹
My strategy when my own prior auths get denied is to fucking drown the insurance in medical records, so I just had over 450 pages of stuff from a single hospital sent over and now I’m going to give them a call and tell them I’m sure whatever evidence they need is in there 🤠
And another thing: how ridiculous are all these suggestions for patients who have severe neurological, immunological, vascular, and endocrine dysfunction. Future #medtwitter will be super embarrassed for 21st century medicine...
(And ofc, this problem isnt unique to POTS)
Managing POTS like the above is so much effort and i feel like that is rarely acknowledged. And if we dare admit we dont follow one of these things we get judged for "not trying"
And maybe it would be less ridiculous if these were temporary measures until we see a specialist who has ✨wonder drugs✨ but no. We are lucky if we can see a specialist. And then its a game of potluck as to whether and how much you respond to treatments.
Maybe it'd be less ridiculous if all these things were feasible, accessible, & actually brought significant benefits, but for many of us, none of those criteria are consistently met. All these things might result in being able to stand up a few mins longer. Hardly groundbreaking
And how the hell are we meant to enjoy that time??!
🧂Electrolytes - have them all!...everyone likes salt, right? If not, try ORS, that's tasty, convenient, and cheap (🧐). Dont be worrying about negative long term effects of lots of salt either—thats a future you problem, because we dont have data on that yet either 🙃
🍝Have small, frequent meals, with not too many carbs...because preparing food isnt difficult when you cant stand up, and its not like food has other purposes (like enjoyment) beyond providing nutrients
🚲Exercise...and just don't worry if you get PEM or its uncomfortable 🤗 try not to raise your HR too much though! 🌞Avoid the heat...thats super easy 😎
🪑Be upright as much as possible...even though your literal issue is being upright. And sleeping propped upright is of course super comfortable 🫠
🧦Wear compression garments...which are ridiculously hard to put on (especially in those with energy limiting comorbidities like ME), and are incredibly uncomfortable, especially in the heat when you need them most
I dont think #POTS experts realise how all-consuming the first line treatments can be: 🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)
That sensation is so horrific. It’s indescribable. I don’t think doctors and researchers who don’t have LC have the slightest inkling how bad it actually feels.
It’s ok if you are open & honest about the reality of your chronic illness/disability. And it’s ok if you don’t feel like talking about it too. It’s difficult to navigate & we have to do what works best for us individually. What we can’t do is decide what works for someone else
OK #LongCovid pals I need your help. I've been feeling really low lately, don't want to go out, appetite is very poor, isolating myself. Long story short is I've become depressed which is understandable given everything that has happened.
I’m so sick of playing nice with physicians/providers and acting like they understand science when they don’t. Dancing around their egos is so draining. If they had adequate scientific training (or any decent scientific training) maybe they’d understand the limitations of their…
It would be really cool to have an in-nose N95 filter so you can wear one in public without getting annoying comments. It would work by only breathing through your nose.
Ehlers-danlos syndrome is actually terrifying lol. It’s the stuff of nightmares tbh.
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