“You’re lucky you don’t have to work,” is often said to disabled people.

My guy,, I have NINE drs appts this week!!

9 appts in 5 days.

6 last week. 4 next week.

I wish I could work. I can’t.

Being disabled is not a vacation.

#NEISVoid
#Disabled
#Disability
#Spoonie
#Tubie
#Gastroparesis
#EDS

And if I’m *not* at home, I’m at a drs appt 🫠

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #EhlersDanlosSyndrome #EDS #Gastroparesis #FeedingTube #Tubie #POTS

Yes! I use #Guava to track medications, symptoms, vitals, and more! I also have an app that will alert me to barometric pressure changes so I can better prep for the day!

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Gastroparesis #FeedingTube #TubeFed #Tubie #EhlersDanlosSyndrome #EDS

It’s rude of my disabilities to disable me, but at least I have my eight (8) library books to keep me company 🙂‍↕️

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Tubie #FeedingTube #WheelchairUser #EDS #EhlersDanlosSyndrome #AmReading #BookSky #LibraryKid #Libby #AmReadingFantasy

Tim Travers and the Time Traveler's Paradox (2024) An incurably bored genius invents a time machine to find out what happens when you travel back to the past and eliminate your younger self.

just finished watching a pretty cool time travel #movie. #moviesky #filmsky #Scriptsky #movies #films #tubie

definitely recommend. tubitv.com/movies/10004...

Sometimes I know the labs will take a couple days, but I STILL find myself checking the portal every few hours … or multiple times an hour 🙈

#NEISVoid #Disability #Disabled #Labs #Labwork #ChronicIllness #Spoonie #Tubie #FeedingTube #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS #JTube #GTube

Disabled life means waking up to lab results, MyChart messages, appointment reminder calls, and more 🫠

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Tubie #FeedingTube #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS #Dysautonomia #POTS #PosturalOrthostaticTachycardiaSyndrome

I’m cold. It’s 11pm. The heat goes down to 64 during the night. I want to curl up in my heated blanket, but I need to do tube care first. Doing tube care means exposing my abdomen to The Cold 🥶

#NEISVoid #Gastroparesis #Spoonie #Tubie #FeedingTube #Disabled #Disability #ChronicIllness #HEDS #MCAS

I have to use silver nitrate to treat granulation tissue around my #GTube. I hate doing this because it’s sooo painful and then the tissue keeps coming back 😭

#NEISVoid #FeedingTube #Tubie #Spoonie #ChronicIllness #Disabled #Disability #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS

cw: blood

My #GTube site HURTS and I’m so v tired of this #ChronicPain. My #JTube has its own issues, but my G site is /bleeding/ and restricts movement. It feels like I’m being stabbed with an electrified poker 😭

#NEISVoid #Gastroparesis #TubeFed #Tubie #ChronicIllness #Disabled #Spoonie #EDS

Join us at 10:30am in our for a cuppa and a catch-up. (Facebook group event).

Plus, it's the final day of #FeedingTubeAwarenessWeek! Massive respect to our #Tubie warriors fueled by strength to fight #IBD. 🦸‍♀️⛽️

#Crohns #Colitis #FTAW2026

It’s #FeedingTubeAwarenessWeek! 🦸‍️🥣

For many with #IBD, tubes are the "SuperHero fuel" that keeps them going. We're "cutting the crap" on stigma this week - a feeding tube is a tool of strength, not a sign of failure. 💜

#IBDSuperHeroes #FeedingTube #Tubie #Crohns #Colitis #IBDawareness

Feeding Tube Awareness Week image from the charity Guts UK

It's Feeding Tube Awareness Week.
Guts UK Charity is the national charity for the digestive system and have put together lots of helpful information for people to learn more about feeding tubes. They want to raise awareness and reduce stigma around feeding tubes #TubeFeeding #FeedingTube #Tubie

My new feeding tube formula trial starts today and ya girl is nervous 😬

Fingers crossed and all the good vibes that I tolerate this one better 🍀

#NEISVoid #Disabled #Disability #Gastroparesis #FeedingTube #JTube #Tubie #Spoonie #ChronicIllness

Noelle, a white person with glasses and braided blonde hair, smiling and giving a thumbs up. She is standing in her bathroom and there are towels on the racks behind her. She is wearing a cropped black shirt that exposes her scarred abdomen. You can see her G-tube and her J-tube. She is wearing blue leggings and clipped to the side of her leggings is a purple drainage bag cover with stars on it.

I get 90% of my nutrition through my #JTube #FeedingTube. This is what’s best due to my severe #Gastroparesis, #MCAS, & #FoodAllergies.

#FedIsBest no matter how you get your nutrition!

Sending spoons to all 🥄 🥄 this holiday season!

#NEISVoid #Disabled #ChronicIllness #Tubie #Spoonie #Disability

Me (to myself): why am I hungry?

Also me: it’s because you haven’t connected to feeds you silly goose 🤣🪿

#TubeFed #KateFarms #FeedingTube #Tubie #Gastroparesis #FedIsBest #JTube #NEISVoid #EDS #EhlersDanlosSyndrome #Spoonie #Disabled #Disability #ChronicIllness

I'm in Waiting Mode for a phone call,, rip ):

However, I need to do tube care bc I can feel my J-tube site leaking and saturating the gauze and it's burning my skin ((:

I want a nap 😴

#NEISVoid #ADHD #ProductivityParalysis #Disabled #ChronicallyIll #Spoonie #Tubie #Gastroparesis #GTube #JTube

I’m a little frustrated because I’m finally in the right headspace to clean my room and my body is saying No Thank You /:

#OrthostaticHypotension #Dysautonomia #ADHD #Neurodivergent #POTS #EDS #Gastroparesis #Tubie #JTube #TubeFed #Disabled #NEISVoid #Disability #ChronicIllness #Spoonie

My BP decided to go woosh 📉 (75/47) while I was standing to get Kit’s morning meds… I managed to safely set up fluids and I’m now horizontal once more ❤️‍🩹

#OrthostaticHypotension #Dysautonomia #POTS #Disabled #Disability #ChronicIllness #Spoonie #NEISVoid #EDS #Gastroparesis #Tubie #JTube #MCAS

Und co halbwegs geübt bin
-außerhalb der med Dinge und Dingen, die Sicherheit geben-
Im Sachen packen.

Es wird definitiv spannend 😅

#ChronischKrank #hEDS #Motilitätsstörung #smallFiberNeuropathie #Gastroparese #slowTransit #SFN #EhlersDanlosSyndrom #PeG #jpeg #feedingTube #Tubie #Piccline

T-shirt ist vllt. Blöd
10 Tage ohne Infusionen
-Die den Großteil meiner Flüssigkeitsaufnahme am tage ausmachen-
Wäre mehr als sch...

So wird das früher als super anstrengende, "normale" Packen plötzlich zu einer kleinen Nebenbaustelle, über die man sich fast freut.

#PEG #j-peg #Tubie -hEDS

#tubeFeed #tubie #selteneErkrankung #rareDisease #chronischKrank #notjustSad #chronicIllness #kptbs #dis #dissoziativeIdentitätsstörung

Does anybody have an #Omni pump?

I switched from the #KangarooJoey to the #KangarooOmni, but it keeps alarming whenever I use my backpack /:

Does anybody have #FeedingTube backpack suggestions?

#Gastroparesis #TubeFed #Tubie #JTube #GJTube #GTube #NJTube #NGTube #NEISVoid #Spoonie #ChronicIllness

Noelle, a white person with braided blonde hair and glasses, is wearing a hospital gown and smiling at the camera.

Started #GastroparesisAwarenessMonth with a tube change ➰

#Gastroparesis (also called #DelayedGastricEmptying) is a #RareDisease.

Ask me about #GP and I’ll let you know about my experience!

#Awareness #Disabled #Disability #Spoonie #ChronicIllness #FeedingTube #JTube #TubeFed #Tubie #NEISVoid

My feeding tube pump broke 😭

I’ve already spoken to my supply co and they’re getting me a new one. It’s gonna be a different brand with different feed/flush sets and I don’t like change 🥲

#NEISVoid #FeedingTube #Tubie #TubeFed #JTube #Gastroparesis #Disabled #Disability #ChronicIllness #Spoonie

If you live with #PosturalOrthostaticTachycardiaSyndrome, #Gastroparesis, #MastCellActivationSyndrome, #EhlersDanlosSyndrome, or #EosinophilicEsophagitis… then this listing is for you: www.etsy.com/listing/1714...

All designs are 20% off until July 31st!

#POTSie #Tubie #HEDS #SwallowingDisorder

I'm having FEELINGS bc it's almost the second anniversary of my J-tube surgery and what turned into a four-week hospitalization (instead of their estimated three days).

I'm also in the process of switching brain therapists atm, which is Rough.

#Gastroparesis #FeedingTube #JTube #Tubie #NEISVoid

📣 Model Call! Spoonie Threads is casting a boy, size 6, who uses a G-tube, J-tube, insulin pump (abdomen), or chest port.

🗓️ Shoot: Aug 5
📍 Orange County, CA
💵 Paid
DM us or email marketing@spooniethreads.com
#ModelCall #AdaptiveClothing #GTube #Tubie

digital reference art of a cartoon Smilodon-dinosaur hybrid.

My FOP has contributed to severe Kyphoscoliosis and Dysphagia, resulting in the need and lifelong dependence on a feeding tube.

I sometimes use my character Milo to represent the #Tubie community!

Capuchin monkey with its tongue out

Dingo in a grass yard

Tasmanian devil in an outdoor yard

A red panda asleep on a lofted platform

I went to six zoos in six days!!

Here’s my #ZooTour #Vlog of #FortWayneZoo in #Indiana: youtu.be/6c690SN4sCM?...

#Giraffes #Dingo #CapuchinMonkey #RedPandas #VisitIndiana #TravelVlog #CreatorSky #YouTuberSky #CreatorLift #Disabled #AmbulatoryWheelchairUser #POTS #EDS #Tubie #Spoonie #Gastroparesis