#Painsomnia is at it again 😭 😭

It’s 12:40 in the morning and my #GTube has decided even breathing makes the site pain worse. I wish I could curl into a ball, fall asleep, and wake to my abdomen having done a forced factory reset. Imagine! Functioning organs, no more scar tissue ✨ ✨

#NEISVoid

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

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

Doc: I’ve been here 10 years and never seen that before

(Regarding how my feeding tube is broken)

Story of my life 😭

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

Omw to the hospital for an emergency tube change. Happy #FeedingTubeAwarenessWeek to me ))))):

#FTAW2026 #FeedingTube #Gastroparesis #JTube #GTube #NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #EDS #EhlersDanlosSyndrome #MCAS #MastCellActivationSyndeome #EosinophilicEsophagitis #EOE

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

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 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

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

📣 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

Individuals who suffer from allergies, eosinophilic disorders (EGID’s), or other diseases may be on an elemental diet, in which all or most sources of protein are removed from the diet.

Visit #FAACT to learn more:
www.foodallergyawareness.org/living-with-...

#FoodAllergy #Allergy #EGID #GTube

📢 Model call! We're casting a size 6 kiddo with a G-tube, J-tube, abdominal insulin pump, or chest port for a paid shoot in Orange County, CA on July 16!

DM us or email marketing@spooniethreads.com to learn more! 💫
#DisabilityRepresentation #ModelCall #AdaptiveClothing #GTube #ChestPort

Skin irritation around a G-tube? Dr. Julie Sanchez (pediatric surgeon + Spoonie Threads co-founder) has tips that can make a real difference. 💡

🎥 Watch now → youtube.com/shorts/8qtlC...

#gtube #askdrjulie #spooniecommunity #disabilitytwitter #feedingtubeawareness

The infantile form of #Cystinosis makes up 95% of cases. It usually leads to kidney/ growth problems. (Orphanet Journal of Rare Diseases, 🔗 in bio) We monitor Oliver's feed volumes & growth progress VERY closely as a result. 

How does your #gtube kiddo do with weigh ins and labs? #ShareYourRare

A G-tube (gastrostomy tube) delivers nutrition, fluids & meds directly to the stomach for those who can’t eat by mouth, like Oliver. It can be temporary or long-term, improves health & quality of life, and requires daily care. Safe, effective, and life-changing. 💚 #GTube #Cystinosis

“Perfect for CVL access for my 6 month old.” 💕

Another 5-star review for our G-Tube Bodysuit ⭐⭐⭐⭐⭐

Designed for comfort. Made with love.

spooniethreads.com/collections/...
#gtube #spooniebaby #adaptiveclothing

It doesn’t help us. Medical safety is TOO IMPORTANT. And here, in the home of your constituents, #Medicaidislife #expreemie #tracheostomy #gtube #oxygen Joy. Adventure. LIFE!

Piggybacking off of this.
Ask me anything!

#FeedingTubeAwarenessWeek #FeedingTube #TubeFed #GTube

Jammie January is almost over! ⏳ Grab your fave G-Tube PJs before they’re gone Jan 31—plus, select styles are 25% off!

Shop now: spooniethreads.com/collections/... #GTube #AdaptiveClothing

Styling. #transgender #chronicillness #tattoos #bodymodifications #transman #oxygen #gtube #hickmancentralline #fulltimewheelchairuser #urostomy #binderboy #transisbeautiful #hrt

Learn more about how our brave little heroes in our community get their nourishment. The secret (shhhhh!) ingredient in every package is LOVE. ❤️
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#foodasmedicine #wholefood #organic #medicalmom #gtube #tubefeeding #rdchat

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

Gaslighting at its finest 🤒 #gaslighting #chronicillness #terminalillness #oxygen #hickmancentralline #urostomy #gtube #tpn #ivfluids #ivmeds

The G-Tube Hoodie 🐻

With discreet side openings for feeding tubes, ports, or catheters, and a two-way zipper for easy dressing and diaper changes, this jumpsuit is ideal for NICU/PICU grads and beyond. Cute, comfy, and oh-so-practical—your little bear is ready to shine this season!
#GTube #Tubie

First post here. Hello Blue Sky! 🦋

#enteral #formula #nutrition #dietitian #spoonie #als #gastroparesis #tubie #gtube

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

Get ready for a cuteness overload! 🎄🎁 Our holiday G-tube PJs are here to make the season cozy and accessible for little ones!

Available in green forest or festive red baubles, these adorable PJs come in sizes preemie to 4T and feature parent-approved 2-way zippers for easy G-tube access. #gtube