Words matter in chronic illness. I reflect on a question my wife asked in 2011 that changed how I talk about sarcoidosis, heart failure, dignity, and why I don’t say I “suffer from” illness. #sarcoidosis #chronicillness https://www.buzzsprout.com/2548730/episodes/19018397
Why I Don’t Say I Suffer From Sarcoidosis - Surviving Chronic Illness: Life in a Body That Rebels

The words we use for chronic illness matter more than most people realize. In this episode, I reflect on a question my wife asked back in 2011, a question that changed the way I talk about sarcoidosis, heart failure, and illness itself. I share wh...

Buzzsprout

Bed Jail Broadcast 📡🛌
Pizza, blankets, and Avatar: Fire & Ash 🔥
Chronic illness forced the pause but we made it cozy anyway.
Luna approved 🐾💙
linktr.ee/skylanarissa
#Disabled #ChronicIllness #AvatarFireandAsh #Avatar

https://dreamingofdragonscom.wordpress.com/2026/04/26/%f0%9f%94%a5-bed-jail-broadcast-avatar-fire-ash/

🔥 Bed Jail Broadcast: Avatar: Fire & Ash

Chronic illness called a ceasefire, so we built a night out of blankets, homemade pizza, and a long-awaited return to Pandora. This isn’t just a movie review. It’s a Bed Jail Broadcast. A story abo…

The Crippled Cryptid.

Could 3 people
Each send $15?

I HAVE to get this phone bill covered.
I know you exist its just a matter of this post finding you 🌟

Go to my page for more info about why I need help! Tysm 💓

Ven: d_fay
PP: peach77

@mutualaid
@disabledvoices
@[email protected]
@lgbtq
#mutualaid #mutualaidmonday #MutualAidRequest #MutualAidSavesLives #directaid #disabled #chronicillness #urgent #fundraiser #supportartists #disabledartist #leftist

RE: https://mastodon.social/@ellespeaks/116459289455763943

Please help! Multi disabled lesbian:
- 2 days without food + diabetic
- Phone bill is over due

Phone - $45
Food - $115

Anything helps SO MUCH
V: d_fay
P: peach77

#Mutualaid #MutualAidRequest #MutualAidBoost #MutualAidSavesLives #disabled #spoonie #chronicpain #chronicillness #ptsd #pmdd #bpd #Kofi #venmo #paypal #crowdfunding #helpneeded #helpfolkslive2026 #lgbtq #lesbian #queer #artist #disabledmutualaid #urgent #urgentmutualaid

@mutualaid
@mutualaid
@povertyandinequality
@disabledvoices

Wondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.

Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.

#ChronicIllness #SpoonieAuthor #NEISVoid

Some weeks aren’t good or bad… just real.
Chronic illness, spring storms, soft wins, and a very opinionated service dog 🐾

linktr.ee/skylanarissa
#TheCrippledCryptid #ChronicIllness #HealthUpdates #DisabledCreator

https://dreamingofdragonscom.wordpress.com/2026/04/25/saturday-health-update-flood-warnings-soft-wins-and-the-weeks-that-just-are/

Saturday Health Update: Flood Warnings, Soft Wins, and the Weeks That Just… Are

Some weeks aren’t dramatic. They don’t crash or burn or rise into anything triumphant. They’re just… real. The kind where your body is loud, the weather is louder, and you don’t have the energy to …

The Crippled Cryptid.

After having IBS for nearly **FOURTEEN** years - I can safely say that I wouldn't wish this (or any other GI malfunction) upon even my worse enemy... This dirt SUCKS!  

#irritableBowelSyndrome #ibsproblems #ibs #chronicillness #vent

4 levels of pain for entities with chronic pain, and how they correspond to those who don't have chronic pain:

Level 1: Technically hurts, but so little that you don't really register it. (for normal people, hurts moderately)
Level 2: Hurts enough so that you mentally register the pain, but it still does not bother you much (for others, it's "take me to the hospital")
Level 3: Hurts enough that you are considering taking a trip to a hospital (others; dear god it hurts, gimme morphine!)
Level 4: Dear god it hurts, gimme something! (others: How are you still conscious!? Or alive!)

#chronicpain #chronicillness

In September I had a horrible flare that resulted in me not being able to publish an article for an entire month.

I was miserable.

I felt like a complete failure.

I thought about quitting.

I swore I would never go that long without writing again.

Writing is what sparks my joy. Provides me community and connection. Gets me through the painful dark times.

It’s now been six weeks since my last article.

I’ve broken my promise to myself and I’m so angry.

I’m angry at my body for being unwilling to cooperate.

I’m angry at my brain for not being able to play through the physical pain.

I’m angry at the healthcare system for abandoning me and patients like me.

I’m angry at corporate greed and end state capitalism for not guaranteeing vulnerable people have basic needs like housing taken care of.

The anger is not healthy. It’s eating away at me.

My housing situation is almost stabilized and then I hope I’m back writing the way I did before.

I’m out of the hospital and will have an update on that shortly.

For now I just want to say I’m sorry to everyone who’s waiting patiently for articles that still haven’t materialized.

I’m sorry to everyone else who’s been abandoned or let down by their body and the system.

I’m sorry things are so hard.

We will get through this together and better days will come eventually.

I really do believe that and I hope you can believe it too.

#chronicillness #ableism #disability #trauma #writing

Crashed by abuse. Nothing stops them. Stupidly warned them I needed rest or may need treatment making me sicker long term. (GP advice.) Of course they abused me on purpose. Fever, swollen ribs, pain, screaming. No food or help. Escape ASAP killing me. #Mecfs #Longcovid #pwme #MCAS #ChronicIllness #Covid