One year's supply of IV Saline, accessories. Nurse authorization for a year from insurance. You'd have thought, at this point, that this would've been automatic but no - not by any stretch of imagination. Took me 4 months! #POTS #LongCovid #NEISVoid

Female chronically ill friends of Twitter, has a doctor ever discounted your physical symptoms, delayed diagnoses, or dismissed diagnoses by instead chalking up your symptoms to “just anxiety or stress”? #NEISvoid

As a chronically ill/disabled person how could your friends and family be more supportive to you? What things could they do or say to make things easier for you? #NEISvoid

Ah, yes, it's all good because disabled people are *choosing* to be ejected from society. No big deal! Let's spread it around! (/sarcasm)

#DisabilityTwitter #COVIDisAirborne #LongCovid #BringBackMasks #CovidIsntOver #neisvoid @[email protected]

#NEISvoid #TMJ Awareness #TMJ #TMD #Fibromyalgia #EhlersDanlosSyndrome #ChronicPain #JawPain #FacialPain #TMJ Surgery
Please consider doing this survey. Thanks!🐈
redcap.stanford.edu/surveys/?s=7R8…

Colleen Wilson Jocelyn J. Fitzgerald MD I can believe this happens, but it’s not the rule. That is ridiculous.

H/t Wendi Muse

CC: Mask Bloc PDX MaskBlocABQ maskbloc614 [email protected] 😷🐮 Mask Up Pittsburgh @[email protected] Fight COVID NOLA MaskBlocATX MaskBlocLA MaskBlockSunsetSF

#NEISvoid #DisabledTwitter major MRI-safe mask deal!

Remember my old GP? The first one to connect the dots & get me hEDS, POTS & MCAS diagnosis? She is back after her burnout break! I'd emailed her about my #Covid reinfection. Her assistant called me & gave me the earliest appointment possible to address #LongCovid . #NEISVoid

#NEISvoid I am taking Low Dose Naltrexone (LDN) to see if it will help my pain levels caused by hEDS and fibro.

Would just like to say to my fellow chronic pain patients - always keep your expectations realistic. It's surely worth trying if you can get your hands on it... (1/2)

Fight, meditate, conquer! ArenaJam is the ultimate VR battleground where you can unleash your inner warrior

Blood draw alone in a few minutes. Wish me luck. 🤞

Hoping it's a very gentle tech with a tonnn of patience.

Thanks #NEISvoid 💙

Tips for breaking up as a disabled person who is taking care of a disabled partner?

Partner has very few resources. #neisvoid

Has anyone used kinesiology taping for foot drop? I went based on a tiktok so I have no idea if this is correct. It does feel like it gives good support though! #neisvoid

My dad is on day 11 of covid & still testing positive.

I’m telling him to rest as much as he can but I can’t find that resource that lists supplements to stay on top of/other stuff you can do to help your body while it’s recovering.

Does anyone have that link/thread? #NEISvoid

Have you seen any images showing #MedicalGaslighting , patient neglect, abuse, exploitation; or medical PTSD, #NEISvoid ? Art can help people understand concepts and experiences they haven't been through, especially on an emotional level.
Post it below 👇 we can create a galley.

Don’t get caught slippin’ with an empty stash 💯

What helps your brain fog?
#neisvoid
#POTS

Anybody have connections/friends at anywhere with a helipad near Great Neck, Long island ?

Being transported flat and minimizing the number of minutes as much as possible will be critical to getting into neurosurgery.

Incredibly serious inquiry #neisvoid #MEspine#MECFS

Medical Gaslighting in Art.
'Women are twice as likely as men to be diagnosed with a mental illness when their symptoms are consistent with heart disease.'
#NEISvoid #MedicalGaslighting #EDS #pwME nytimes.com/2022/03/28/wel…

What a Covid-19 outbreak at a CDC conference can tell us about the current state of the pandemic vox.com/health/2023/5/…

Who can sleep in the hospital? Not this girl.

#mecfs warrior #NEISvoid #autonomicneuropathy #spoonie #youdontlooksick #Dysautonomia #youareenough #mecfs #chronicillness #invisibledisability #sjogrens #rituximab

If you’ve seen my tweets about hating unsolicited advice, you already know people living w/ #Migraine & other chronic illnesses don’t like it. Here are some things we DO appreciate hearing from people who care. 💜 What would you add? #MHAM #Disability #ChronicIllness #NEISVoid

Do any folks in #NYC with #MECFS and/or #LongCovid have any recommendations for ME/CFS specialists? #NEISvoid #MECFS #LongCovid

You can't spell elite without eli

Quick PSA to #pwME , #pwLC , #NEISvoid : I've been offline for the most part the last week - please let me know if there's anything I've missed in the advocacy landscape, if you think is worth highlighting.

I married my best friend & feeling very lucky for that.