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#ChronicIllnesses

0 posts0 participants0 posts today
Public *
JADe (he, him)

Today is international #LongCovid Awareness Day

Check this canadian interview with a Mount Sinai (NY) chronic disease specialist. Up to one in five people with COVID-19 develop LONG COVID, meaning three months after having the disease they still do not recover their full abilities.

The specialist affirms that each reinfection, even moderate, of COVID-19 subtracts between 2-6% of IQ.

LONG COVID is a disease that causes systemic damage, especially to the immune system, causing T-cell exhaustion and triggering latent diseases or exposing the body to new pathogens from which it would have been able to defend itself before. Worth a listen:

cbc.ca/player/play/audio/9.668

#CovidLong #COVID19 #CovidIsNotOver #COVIDisAirborne
#CovidIsntOver
#ImmuneSystem #ImmuneDysfunction
#autoimmune #TCell
#chronicillness
#ChronicIllnesses

Public
Tom Kindlon

🧵
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"

eurekalert.org/news-releases/1

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@lupus @mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #MEcfs #CFS #PwME
1/

Continued thread
Public
Tom Kindlon

5/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

@mecfs @longcovid @chronicillness @spoonies

Continued thread
Public
Tom Kindlon

2/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

#LongCovid #MEcfs @mecfs @longcovid @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Public
Lanie Molinar Carmelo

🌟 Introduction Post 🌟

Hi everyone! 👋 I'm Lanie Molinar Carmelo (she/her), and I'm thrilled to join the amazing community here on allovertheplace.ca! Here's a little about me:

🧑‍💻 Who I Am

I'm a #UsabilityTester and an aspiring #AccessibilityConsultant, working to make technology better for everyone, especially those of us with disabilities. I'm most passionate about helping those with multiple disabilities, as it's an area that doesn't get enough attention.

🐾 Meet Squeaker!

I'm also the proud human to my 10-year-old Miniature Pinscher, Squeaker, who is the best little companion anyone could ask for. 🐕💖 He drives me nuts sometimes, but I don't know what I'd do without him. My profile picture features me with Squeaker, and my header shows him wrapped in a blanket with just his adorable face peeking out!

📚 What I’m Studying

I'm currently learning:

  • Digital Accessibility through the BIT Accessibility Analyst Course
  • Literary Braille Proofreading via the NLS
  • Programming on platforms like freeCodeCamp and Codecademy

My goal is to develop accessible apps that empower people with disabilities, contribute to open-source projects that promote inclusion, and just do what I can to make the world more accessible.

💡 What I Do

I run or co-lead several online support groups for people with multiple disabilities. These groups provide safe spaces to connect, share resources, and talk with others who "get it." You can find them here:

  • Facebook: Multiple Disabilities Peer to Peer Support Group
  • Discord/Mailing List: MultAbilities
  • Clubhouse: People with Multiple Disabilities

Right now, my focus is on growing these groups and making connections with others who are passionate about supporting multiply disabled individuals. If you're interested in joining or collaborating, feel free to reach out or check out my website at laniecarmelo.tech, where you'll find links to all the groups!

🎮📖🍴 My Interests

When I’m not advocating or studying, you can find me:

I also love swimming 🏊‍♀️ when my health allows it.

🛠️ My Goals

One day, I hope to found a nonprofit organization to support multiply disabled individuals. The nonprofit would:

  • Provide peer support groups
  • Help fund assistive technology
  • Advocate for education and employment opportunities
  • Collaborate with disability-focused organizations to improve accessibility

For now, I'm focused on running my support groups and building connections that could help make this dream a reality. If you have ideas or resources—or just want to chat—let me know! 🤝

🤝 Let’s Connect!

I’m always happy to chat about:

  • Accessibility in #tech or tech in general
  • Disability advocacy
  • Programming (#HTML, #JavaScript)
  • Braille
  • Books
  • Or just life in general!

Feel free to follow me here or check out my website at laniecarmelo.tech.

freecodecamp.orgfreeCodeCamp.orgLearn to Code — For Free
#Introduction#DisabilityCommunity#AccessibilityMatters
Public
Irene (she/they, Sir/Mr.)

Hai, if youre seeing this, plz tap buttons so I know youre there :) im new & seeking friends, heres a lil #intro abt me

- I joined Mastodon when my partner & I started(? Launched? Installed?? Built??) our own instance (server??? Lol, still learning!) a few days ago

- i use many kinds of #art & #crafting as my #therapy

- i have #chronicillnesses that slow me down a lot

- i love adventure, learning, & building community

- more things i like: #legwarmers #lemonade #lavender #collecting #beach

Public *
Lanie Carmelo

Hello, caneandable.social! I'm Lanie, a 33-year-old #Christian woman from Pipe Creek, TX. I'm #aroace, #TotallyBlind, #ActuallyAutistic, and living with multiple #ChronicIllnesses. I've just moved over from tweesecake.social, so I'm excited to meet new people and reconnect with familiar faces!

A bit about me:
- I live with my mom and stepdad, who are my caregivers
- I have a Miniature Pinscher named Squeaker
- Currently studying programming on freeCodeCamp.org and codecademy.com and Braille proofreading through the NFB
- I work as a usability tester and aspire to become an #accessibility consultant
- My goal is to create a nonprofit for people with multiple #disabilities

My interests include:
- #Gaming (especially accessible games like incremental/idle games, word games, puzzles, RPGs, roguelikes, and MUDs)
- #Technology and #Cybersecurity
- #RareDiseases and #DisabilityRights
- Reading (sci-fi, fantasy, thrillers, mysteries, and nonfiction)
- Swimming
- Gardening (planning to start soon!)

I'm passionate about #accessibility and creating a more inclusive digital world. I run online groups for people with multiple disabilities and am active in the #DisabilityCommunity.

Some of my #health conditions include occipital neuralgia, intracranial hypertension, Empty Sella Syndrome, fibromyalgia, hidradenitis suppurativa, GERD, gastroparesis, IBS, sleep apnea, migraines, and non-24-hour sleep-wake disorder.

I use various devices to navigate the digital world, including a Windows computer, iPhone, Android tablet, Fire TV, Echo Dot, Apple Watch, wireless headphones, and a Braille display. #AssistiveTechnology

I'm always eager to connect with others who share similar experiences or interests. Feel free to reach out, especially if you're into #AccessibleTech, #DisabilityAdvocacy, or if you just want to chat about books, games, or life with multiple disabilities!

#Introduction#NewHere#BlindMastodon
Replied in thread
Public
Likely Jan Lukas

While I'm pretty fair at attempting #differential on my own, I always seek competent #medical help to affirm or reject my suspicions.

After all, I'm NOT a doctor, nor do I play one on TV!

But an important part of my life journey with many different #ChronicIllnesses has been to learn everything I can so as to either work with it or mitigate it as best as I can. And a proper diagnosis is critical for doing that well.

22/x

#dx
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