iiinova — where your digital self keeps evolving

Reposted by grumpyhobbit

Pickle and Nancy @pickleandnancy.bsky.social · 12/10/2026

🎃👻Please can customers in the US, Canada, Nz and Australia place any orders containing Halloween cards💌 on or before 15 October-many thanks 🤩 💀🧙‍♀️🎃 pickleandnancy.etsy.com

1175

Reposted by grumpyhobbit

Belasco @belasco.bsky.social · 09/10/2026

#neisVoid gotta maintain our standards! lmao

061

Reposted by grumpyhobbit

Kelly @broadwaybabyto.bsky.social · 09/10/2026

“If you’re really that sick you should be in the hospital” Please stop saying this to chronically ill people. If we went to the hospital every time we suffered, we would live there. Hospitals can’t help us and they often make us worse. We are on our own, and being subtly gaslit doesn’t help.

35986216

Reposted by grumpyhobbit

Premee Mohamed @premeemohamed.com · 10/10/2026

I would like to very slowly explain to the (many) people in my life that if going to the hospital would fix me, I would just do that and get fixed however, the word 'chronic' in chronic illness is kind of a big clue 🫩🫩

1343961

Reposted by grumpyhobbit

The Creatively Maladjusted @tyrotcm.bsky.social · 10/10/2026

I routinely call after hours nurse triage to report symptoms & other medical status changes, & they routinely tell me they're required to advise me to go into emergency. They know better than to believe I actually will. #NEISVoid

031

Reposted by grumpyhobbit

Lady-Rain @lady-rain.bsky.social · 11/10/2026

The year is growing older yet the world has never looked so young… #AutumnDream #Travel #ArtInNature #Colorado #photography #Autumn

The world growing younger in the golden arms of autumn.

2755376

Reposted by grumpyhobbit

Rob Crank Photography @robcrank68.bsky.social · 12/10/2026

Good Morning folks. Today's #BirdOfTheDay theme is #Brown, any bird with Brown in its plumage. The Alt theme is #Blue, any bird with Blue in its plumage. #ECK #photography #CanonR5mkii #birdphotography #birds @bbcspringwatch.bsky.social @rspb.bsky.social #ukbirding #ForJanet #NatureTherapy

4738454

Reposted by grumpyhobbit

🏴‍☠️ 🐱 Porch Troll the Elder Brat 🏳️‍🌈🏴‍☠️ @witchboy-lael.bsky.social · 12/10/2026

#ChronicIllness humor: Me: So, have you ever considered returning me and asking for a manufacturer's refund for defective product? Eros: *deeply concerned sad meowing instantly* Hubby: Stop it, you're upsetting the cat! He doesn't want a new daddy! Me: True, & nice side stepping answering it!

182

Reposted by grumpyhobbit

The Science of Parkinson's @scienceofpd.bsky.social · 12/10/2026

New research presents a PRISMA-compliant review of Phase II & III disease-modifying trials (2020-25) assessing target engagement. 14/19 #Parkinsons trials (12 phase II/2 phase III) had at least 1 measure of target engagement academic.oup.com/brain/advanc...

academic.oup.com

Target engagement and efficacy in disease-modifying trials of synuclein-related disorders

Artusi et al. review clinical trials in Parkinson’s disease and related disorders to examine whether biological markers of drug activity predict clinical b

142

Reposted by grumpyhobbit

Princess in the Tower @apainprincess.bsky.social · 12/10/2026

“Autoimmune diseases are so hard to diagnose…I was constantly pumped full of different drugs in hopes that one would help me. People do not realize that it can take years to get relief from your symptoms and get a proper diagnosis.” buff.ly/GTRMRwU #ChronicIllness #Autoimmune #MS #Lyme #CRPS

0113

Reposted by grumpyhobbit

Beyond Label Reads @labelreads.bsky.social · 12/10/2026

Talking about seizures doesn't necessarily mean one is obsessing, but rather actively managing an unpredictable, serious neurological condition. Do people say that you pay "too much" attention to your health? #EpilepsyAwareness

042

grumpyhobbit @grumpyhobbit.bsky.social · 12/10/2026

I slept a lot last week, more than I expected, but I went to several events the week before. Took a bath yesterday, and did some grocery shopping. Yay me!

020

Reposted by grumpyhobbit

The Science of Parkinson's @scienceofpd.bsky.social · 12/10/2026

Aussie-based Mentara Therapeutics has launched with the acquisition of MTA-304 (formerly EM-221), a PDE10A inhibitor (from San Diego-based EuMentis Therapeutics) & plans to initiate a Phase 2 trial in H1 2027 for levodopa-induced dyskinesia in #Parkinsons allsci.com/news/biotech...

042

Reposted by grumpyhobbit

ISB @isbscience.org · 12/10/2026

Tomorrow at noon PT: Join ISB President Jim Heath for a free virtual Research Roundtable on emerging #LongCOVID research, immune responses and the upcoming NIH-sponsored Long COVID Hackathon. Register: isbscience.zoom.us/webinar/regi...

isbscience.zoom.us

Video Conferencing, Web Conferencing, Webinars, Screen Sharing

Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom ...

043

Reposted by grumpyhobbit

The Science of Parkinson's @scienceofpd.bsky.social · 12/10/2026

Aspen Neuroscience looks for IPO to help fund future developments (a phase 3 trial of sasineprocel in #Parkinsons) www.fiercebiotech.com/biotech/park...

fiercebiotech.com

Parkinson’s-focused Aspen and bispecific biotech Bambusa plan IPOs

Parkinson’s disease cell therapy-focused Aspen Neuroscience and bispecific biotech

032

Reposted by grumpyhobbit

Science for ME (S4ME) @s4me.info · 11/10/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 5 - 11 Oct 2026

196

Reposted by grumpyhobbit

ChronicLoaf @chronicloaf.bsky.social · 01/10/2026

Today is the 1st day of our October Art Prompt and month long Disability Community #lHalloween festival!🎊 Hop into the #ChronicLoaf stream to enjoy the #FaerieRealm theme with us this week! mzelo.com/app/rooms/ch... #longcovid #chronicillness #OctoberArtChallenge #HalloweenArt

51715

Reposted by grumpyhobbit

Maelee @bakednbougie.bsky.social · 06/10/2026

Well... Just found out my SNAP benefits were cut thanks to Trump's new program that makes them reassess you every 90 days... Gonna try to keep my shit together

11819

Reposted by grumpyhobbit

JustAnne @smartpatient.bsky.social · 06/10/2026

Tip from someone who learned the hard way: bring data to your doctor appointments. Even rough notes about when symptoms happen and what makes them better or worse can change the conversation completely. #PatientAdvocacy #ChronicIllness #HealthTracking

131

Reposted by grumpyhobbit

JustAnne @smartpatient.bsky.social · 06/10/2026

Some days the hardest part is explaining to people why you look fine but feel terrible. You're not making it up. Your symptoms are real, your fatigue is real, and you deserve support. #ChronicIllness #InvisibleIllness #Spoonie

111

Reposted by grumpyhobbit

JustAnne @smartpatient.bsky.social · 07/10/2026

If your doctor ever tells you it's all in your head, find a new doctor. Your symptoms matter. Your experience matters. Keep advocating for yourself. #ChronicIllness #PatientAdvocacy #Spoonie

261

Reposted by grumpyhobbit

JustAnne @smartpatient.bsky.social · 07/10/2026

Three things that helped me manage flares better: 1) Identifying my personal triggers 2) Planning rest days in advance 3) Accepting that some days just won't go as planned #FlareManagement #ChronicPain #Spoonie

164

Reposted by grumpyhobbit

A Chronic Voice @achronicvoice.com · 06/10/2026

"U don’t walk into a #doctor's office expecting help anymore. U walk in preparing yr opening statement like u r defending a dissertation..U bring color-coded binders & timeline spreadsheets as evidence because u hv to prove yr case to skeptics": buff.ly/Yb5E61P via ZebrasUnderground #NEisVoid

buff.ly

Every Zebra Has an Odyssey. More Than a Movie, A Mirror

Sometimes the longest journey isn’t across oceans. It’s finding your way back to yourself after illness, trauma, and the stories you’ve come to believe about who you are.

1132

Reposted by grumpyhobbit

JustAnne @smartpatient.bsky.social · 06/10/2026

The worst part about chronic illness isn't always the pain. It's the uncertainty. Not knowing if tomorrow will be a good day or a bad day. Learning to plan around that is a skill nobody teaches you. #ChronicIllness #ChronicPain #InvisibleIllness

042

grumpyhobbit @grumpyhobbit.bsky.social · 06/10/2026

@pumpkinstars.bsky.social I hope you're doing okay today. I was more active than usual last week, and needed to crash for a little while afterwards.

130

Reposted by grumpyhobbit

pumpkin @pumpkinstars.bsky.social · 05/10/2026

final days until Draven and their trans teenager flee a red state to come help my bedridden self in California! Any donations go towards their food and survival needs leading up to and on the ride here! please share and donate if you can 💛💫

078

Reposted by grumpyhobbit

It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/10/2026

Never forget that small advocacy actions can make an enormous difference.

14116

Reposted by grumpyhobbit

derek guy @dieworkwear.bsky.social · 24/09/2026

It's great to see tailoring accommodate such extreme movement today. This level of tailoring was a bit more common in the past, as you can see in old films featuring Fred Astaire or Gene Kelly, but many modern suits will lift off the wearer's neck even when they're just walking.

328165282144

Reposted by grumpyhobbit

SimSamZi @simsamzi.eurosky.social · 06/10/2026

#MECFS #Fatigue "weighed down by concrete" is a pretty good description how it physically feels. Pacing nowadays feels like having a broken battery that only charges up to 10%, you know it's not enough to last all day but it HAS to last all day- so you use every little trick to make it happen. And

2125

Reposted by grumpyhobbit

Humor Satire Memes @funnysnarkyjoke.bsky.social · 27/09/2026

The human spirit was not meant for this many authentication requests

310719

Reposted by grumpyhobbit

Kelly @broadwaybabyto.bsky.social · 27/09/2026

People aren’t faking their disabilities, they’re faking being well. We know society hates us. We know we will be judged for using assistive devices. Many of us take years to get the courage to lean in to accommodations. Stop judging. Help us build a more inclusive world.

563346883

grumpyhobbit @grumpyhobbit.bsky.social · 27/09/2026

Someone I knew used to crumple pieces of paper. If you are physically able, and it safe, you could smash low cost ceramics (and then make a mosaic or other artwork later). I play puzzle games on my computer because it helps me not have to think too much. #ChronicIllness #OkayToBeGrumpy

210

grumpyhobbit @grumpyhobbit.bsky.social · 27/09/2026

If you're not having a good day, it's okay to be grumpy, angry or upset. I used to write all my angry and depressed feelings in a paper journal - but you might want to burn pages you don't want people to read. Some people take a hammer and smash small rocks (in a safe space) #ChronicIllness

000

grumpyhobbit @grumpyhobbit.bsky.social · 27/09/2026

I had a good day yesterday - went to a local neighborhood festival and got to sit outside and listen to music. I am tired today, I am taking the day to rest. I hope everyone is having an okay day, given all the challenges of chronic illness.

010

Reposted by grumpyhobbit

Spoonie Threads @spooniethreads.bsky.social · 20/09/2026

Two little wardrobe helpers. A LOT of possibilities. 👀 Our Support Sleeves + Stretch Waistbands can be useful for medical devices, extra coverage, gentle support, post-surgery needs & more. What do you use yours for? #AdaptiveFashion

021

Reposted by grumpyhobbit

A Chronic Voice @achronicvoice.com · 23/09/2026

"I have severe #fatigue all day..I don’t feel any better after sleep or..pampering like a massage. Long ago, I’ve come to #accept my situation. Most days I do my best to accomplish something, even if it’s just #blogging.": buff.ly/hylajT5 by ehrmanlisa1 #ChronicFatigue #pwME #ChronicIllness

chronicallycontent.org

Terms to Ponder When Living with Chronic Illness - Chronically Content

Terms to Ponder When Living with Chronic Illness. Five prompt words for August and allow the author to be expressive on how these words relate to chronic illness.

072

Reposted by grumpyhobbit

It's ME(Jaime) @exceedhergrasp1.bsky.social · 21/09/2026

Applications are open for the NextGen IACC Scholarship!Trainees create original research projects using a pre-existing chronic disease dataset in this funded, mentor-led research opportunity. MS, PhD, & MD/PhD trainees in a Canadian uni by the start of 2027 can apply www.meaction.net/scholars-pro...

meaction.net

IACC SCHOLARS PROGRAM | #MEAction

The NextGen IACC Scholars Program is a funded research training and mentorship opportunity for graduate students at Canadian universities. Trainees will develop and lead an original research project u...

01513

Reposted by grumpyhobbit

ADAP @adapalabama.bsky.social · 23/09/2026

🔹 RAISE Family Caregiving Advisory Council Open to family caregivers, people with disabilities, older adults who use long-term services and supports, service providers, advocates, and other caregiving experts. (2/4)

acl.gov

Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act Advisory Council | ACL Administration for Community Living

An official website of the United States government

121

Reposted by grumpyhobbit

ADAP @adapalabama.bsky.social · 23/09/2026

📣 Applications are open for two federal caregiving advisory councils! The Administration for Community Living is seeking nominations for: (1/4)

📣 Applications are open for two federal caregiving advisory councils!

The Administration for Community Living is seeking nominations for:

🔹 RAISE Family Caregiving Advisory Council
Open to family caregivers, people with disabilities, older adults who use long-term services and supports, service providers, advocates, and other caregiving experts.

🔹 Advisory Council to Support Grandparents Raising Grandchildren
Open to grandparents, older relative and kinship caregivers, and professionals who support them.

Council members will help shape federal strategies and recommendations supporting family caregivers across the country.

📅 Deadline: October 14, 2026, at 11:59 p.m. ET

Learn more and review the nomination requirements:
https://acl.gov/programs/support-caregivers/raise-family-caregiving-advisory-council
To be considered for selection:
Nominations must include all requested information and attachments and be submitted electronically to RAISE.mail@acl.hhs.gov

121

Reposted by grumpyhobbit

ᴛʜᴇᴇ ᴅᴏʟʟ 🎀 @jessijeannie.blacksky.app · 23/09/2026

✨ MORNING AFFIRMATION ✨ today, I hope you experience the kind of peace that makes you exhale. may nothing disturb your spirit, may everything fall into place at the right time, and may you be reminded that you are supported, covered, and never walking through this life alone 💗

01211

Reposted by grumpyhobbit

It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026

Starting now with the panelists

Bridging Medicine & Lived Experience

Moderator: Lauran Wandner, PhD
Aryn Lee, BA
Bejamin A Bouvier ScB
Kathryn Min, Psy.D.
Heather Guidone B.C. P.A.

1232

Reposted by grumpyhobbit

It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026

I had planned being in-person to the NIH conference, From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders; got be-suited and on the road before I decided I was still too wobby from my COVID vaccination. In-person tomorrow; reporting from home, today! 🧪

3384