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Noelle

@nowhalle.bsky.social

I’ve talked with my insurance, pharmacy, and dr’s office so much in the last two weeks!

📞 35 calls
💬 ~20 portal messages

All to get ONE med 💊

Being disabled is a full time job 😮‍💨

#PostOp #NEISVoid #Disabled #Disability #ChronicIllness #Spooine #Gastroparesis #FeedingTube #JTube #GTube #EDS

October 23, 2025 at 7:02 PM Everybody can reply

8 likes

8

Zebrabande

@zebrabande.bsky.social

Werde?
Ich weiß es nicht.

So absurd es sein mag
Leider macht das krank sejn nicht leichter...

#dis #kptbs #svv #Psychiatrie #MentalHealth #kjp #Jugendhilfe #NotJustSad #EhlersDanlosSyndrom #hEDS #SFN #MCAS #Piccline #Jpeg #FeedingTube #Neuropathie #Motilitätsstörung #rareDisease

October 5, 2025 at 7:55 PM Everybody can reply

7 likes

2 7

Zebrabande

@zebrabande.bsky.social

Erfahrung gemacht,
Die mir in zukunft vielleicht einen Teil der Angst nehmen kann

#EhlersDanlosSyndrom #hEDS #jPEG #FeedingTube #Dis #dissoziativeIdentitätsstörung #Kptbs #Trauma #selteneErkrankung #schoenesGegenDoofes #raredisease #Dankbarkeit #NotJustSad #chronischKrank #unsichtbar #Gewaltfolgen

September 29, 2025 at 8:56 PM Everybody can reply

6 likes

6

Kitty

@redvinylkitty.bsky.social

I had minor surgery today to get a new G/J tube put in after mine dislodged a little over a week ago. eViL PlAnS are BACK on! (After I recover in a day or so. 😅💪🏻❤️) #FeedingTube #Health ❤️

Kitty, very tired looking, sits in the car in her black Kktty ear hat holding and snuggling her plushie Reddiboi. 🐷

March 25, 2025 at 10:14 PM Everybody can reply

2 likes

2

Noelle

@nowhalle.bsky.social

This week is #FeedingTubeAwarenessWeek

I’d love to answer questions about tube-fed life and my experience with tubes to help raise awareness.

#AskMeAnything in the comments!

#Spoonie #Disabled #DisabledSky #AMA #FeedingTube #TubeFed #JTube #Gastroparesis #EDS #MCAS #EosinophilicEsophagitis

A photo of Noelle, a white female with blonde hair and glasses standing in her bathroom with her IV pole. She is wearing a teal tshirt and is pouring a bottle of formula into her feeds bag. Her arm is blocking her face. There is a flush bag already hanging on the pole and her feeding tube pump is visible.

February 2, 2025 at 8:16 PM Everybody can reply

8 likes

2 8

Noelle

@nowhalle.bsky.social

hi @allyann.bsky.social can we add #FeedingTube #JTube #GTube #GJTube #NGTube and #NJTube to this list??

November 19, 2024 at 2:52 AM Everybody can reply

1 quotes 2 likes

2

inthedarkofnight.bsky.social

@inthedarkofnight.bsky.social

I suspect this number is actually higher than believed. #ehlersdanlossyndrome #feedingtube #tubies #spoonies #heds #eds ##ehlersdanlossociety #chronicpaincommunity #chronicillness #gastroparesis #dumpingsyndrome

January 24, 2025 at 8:25 PM Everybody can reply

3 likes

3

Noelle

@nowhalle.bsky.social

Noelle's 2024 Chronic Illness Wrapped:

✨ 5000+ meds taken
✨ 11 new medications
✨ 139 doctor appts
✨ 2 surgeries
✨ 10 days in the hospital

Reply with your #ChronicIllnessWrapped!

#ChronicIllness #Spoonie #DisabledSky #ChronicallyIll #EDS #POTS #MCAS #Gastroparesis #FeedingTube #JTube #TubeFed

A graphic of Noelle’s “chronic illness wrapped 2024.” It is a spoof on Spotify’s “Wrapped.” @chronically.nowhalle is under the heading to represent Noelle’s Instagram handle. There are five text boxes on the page alternating between dark and light blue and various medical-related line art to fill the empty space on the sides. On the left side is a line art of a medical alert symbol and on the right is a medication bottle with pills and a stethoscope. The first textbox says “5000+ meds taken,” the next says “11 new medications,” the next says “139 doctor appts,” the next says “2 surgeries,” the last says “10 days in the hospital.”

a graphic template of “chronic illness wrapped 2024.” It is a spoof on Spotify’s “Wrapped.” There are five empty text boxes on the page alternating between dark and light blue and various medical-related line art to fill the empty space on the sides. On the left side is a line art of a medical alert symbol and on the right is a medication bottle with pills and a stethoscope.The boxes are empty so people can share their own wraps.

December 31, 2024 at 4:21 PM Everybody can reply

10 likes

10

Zebrabande

@zebrabande.bsky.social

Gefunden.😊
Eine Erfahrung die mir ebenfalls Kraft gibt.

#SchoenesGegenDoofes #SonnenscheinMomente #NotJustSad #Kptbs #dis #Autismus #Adhs #jpeg #feedingTube #Motilitätsstörung #ehlerDanlosSyndrom #hEDS #MCAS #SmallFiberNeuropathie #bskyRudel #Hund #assistenzhund (in ausbildung) #SelteneErkrankung

September 4, 2025 at 9:39 PM Everybody can reply

6 likes

6

Music Festival Gestures

@meetinghouse.bsky.social

The procedures were very successful😊

Initially, I could tell by her speech being clearer. Then she went home a few hours later rather than staying overnight for observation 😌

She had a cookie 🍪 at therapy and she is eating small soft meals every day.

#dysphagia
#SwallowingDisorder
#FeedingTube

October 19, 2025 at 2:18 PM Everybody can reply

1

Noelle

@nowhalle.bsky.social

I FORGOT ABOUT MY TEA!!

I set it aside to cool while I was setting up feeds and then Forgot,,

That was an hour ago 😅

#BrainFog #ADHD #Neurodivergent #ND #NoObjectPermanence #Spoonie #Disabled #JTube #FeedingTube #TubeFed #Gastroparesis #NEISVoid #Disability

March 27, 2025 at 2:39 PM Everybody can reply

1 reposts 3 likes

1 1 3

Noelle

@nowhalle.bsky.social

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

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

August 1, 2025 at 4:14 PM Everybody can reply

9 likes

1 9

Zebrabande

@zebrabande.bsky.social

So waren die letzten Monate wirklich eindrücklich und doch sehr erschreckend für mich

Umso mehr hoffe ich auf di

#EhlersDanlosSyndrom #SelteneErkrankung #hEDS #dis #smallFiber #Neuropathie #SlowTransitConstipation #Motilitätsstörung #Gastroparese #feedingTube #Piccline #MedizinBrennt

September 14, 2025 at 10:22 PM Everybody can reply

2 likes

1 2

💚Krìm Brûlée💚

@krimdelakrim.bsky.social

A massive cow's gains, bondage, and feeding~

2022 comm

#furry #anthro #furryart #ssbbw #ssbbwart #immobile #weightgain #wg #wgart #weightgainart #feeding #feedingtube #bondage

November 20, 2024 at 7:48 PM Everybody can reply

43 reposts 260 likes 1 saves

1 43 260

Kitty

@redvinylkitty.bsky.social

Well, I'm at exactly the three month mark, which is when they usually dislodge. So at this point any day it lasts extra is kinda winning. Fingers crossed for this. #FeedingTube 🤞🏻❤️

Kitty @redvinylkitty.bsky.social · Mar 26

Fingers crossed this new tube style stays in place longer than any of my old tube styles. 🤞🏻 #FeedingTube ❤️

June 26, 2025 at 12:47 AM Everybody can reply

4 likes

4

mimmothteaparty.bsky.social

@mimmothteaparty.bsky.social

GulfWarIllness
CBVDysfunction
LDN
MECFSresearch
electrolytes
dysautonomiaawareness
saltyaf
potsawarenessmonth
sinustachycardia
EndMalnutritionInME
FeedingTube
DelayedGastricEmptying
TubeFed
Tubie
malabsorption
tpn
pais
starvingforacure
ChronicCare
migrainechat2
PostCovidConditions
LonghaulCovid
GERD

August 10, 2025 at 3:38 AM Everybody can reply

1

Kitty

@redvinylkitty.bsky.social

Steggie's Always Right: youtu.be/uaJA3QvTUT0 #Vlog #FeedingTube #AlternativeLifestyle ❤️

Steggie sits on Red Vinyl Kitty's shoulder, and he's telling her she celebrated a little too soon. He's not wrong though.

October 2, 2025 at 4:45 PM Everybody can reply

2 reposts 2 likes

2 2

Julian 🏳️‍⚧️♿️🦓💜🥄(He/they)

@chronicallyjulianx.bsky.social

I wish. It’s never gonna happen. #intestinalfailure #gastroparesis #pansdysmotility #tpn #ivfluids #hickmancentralline #gtube #feedingtube #ivmeds #tpndependent #gastricfailure #chronicillness #terminalillness #ehlersdanlos

December 17, 2024 at 1:51 PM Everybody can reply

WinterDaBeast

@winterdabeast.bsky.social

It was too much...and somehow still not enough

@dashydoggo.com

#Furryart #Furry #Nsfw #furries #art #blender #render #animation #Feeding #FeedingTube #ForceFeeding #Bondage #Belly #Gut #BigBelly

August 5, 2025 at 7:01 PM Everybody can reply

65 reposts 360 likes 21 saves

3 65 360

DaiWai Olson

@daiwaiolson.bsky.social

doi.org/10.1097/jnn.... #Neuronurses use #nursingresearch to improve patient care of #stroke patients who need a #feedingtube #reintegrate? #strokenurse #nurses #neuronerds #caring #nursingresearch
@nursingresearch

January 31, 2025 at 2:44 PM Everybody can reply

1 likes

1

Kitty

@redvinylkitty.bsky.social

NEW! Kitty Kart: A new #Vlog about my new wheels is live. Check it out on my YouTube channel: youtu.be/r7p09wVODMk #FeedingTube #Disability #AlternativeLifestyle ❤️

April 8, 2025 at 9:26 PM Everybody can reply

1 reposts 1 likes

1 1

Skrunk

@skrunklesnail.bsky.social

I think my clip on my peg tube is broken 😭 It's leaking anytime the cap is unscrewed but with the clamp on 💔

#feedingtube #gtube #pegtube #disabled #disability

August 28, 2025 at 5:43 PM Everybody can reply

1 likes

1

Macula Pravus

@maculapravus.bsky.social

I used to update everyone on the twit's app, but I've fully jumped ship and left the rats to enjoy the dumpster fire.

But I digress, @redvinylkitty.bsky.social just went back to surgery for her displaced feedingtube.

November 19, 2024 at 4:13 PM Everybody can reply

2 likes

1 2

Noelle

@nowhalle.bsky.social

Had another J-tube exchange yesterday. While the procedure is not something I enjoy, yesterday’s nurse turned on Pandora and let me pick the station! Good nurses honestly make such a difference ⚕️💙

#TubeFed #FeedingTube #NEISVoid #DisabledSky #Spoonie #Gastroparesis #MCAS #EoE #FoodAllergies #EDS

December 5, 2024 at 6:02 PM Everybody can reply

4 likes

4

Guts Charity UK

@gutscharityuk.bsky.social

#Gastroparesis #GastroparesisAwarenessMonth #Awareness #DigestiveHealth #FeedingTube #Spoonie #ChronicIllness #InvisibleIllness (🧵8/8)

August 13, 2025 at 6:31 AM Everybody can reply