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

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

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

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

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

Had another tube change today. I must get up, clean the area, and put a fresh dressing on.

However, have you considered I 👏🏻 don’t 👏🏻 wanna 👏🏻

#NEISVoid #Gastroparesis #GastroparesisAwarenessMonth #GP #FeedingTube #TubeFed #JTube #ChronicIllness #Spoonie #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

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

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

Honestly, thank goodness I have a feeding tube because I hate the flavor of grape Gatorade (but with my tube, it goes straight into my intestines)!

#Gastroparesis #FeedingTube #JTube #Tubie #Disabled #Disability #Spoonie #POTS #PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlosSyndrome

The urge to take my morning meds, set up feeds, and then go back to bed is strong 😴

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

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

Noelle, a white female with blonde hair and glasses taking a mirror selfie while holding her grumpy orange cat, Everest

Noelle, a white female with blonde hair taking a selfie with a thumbs up to show off her maroon “but first, Zofran” sweatshirt that she’s wearing

Noelle, a white female with glasses and blonde hair kissing a carton of Kate Farms feeding tube formula with her eyes closed

A photo of Noelle’s surgical dangle J-tube with a pink tubie pad with hearts surrounding it.

Meant tubie <3

#HappyValentinesDay #MeantTubie #KateFarms #FeedingTubeAwareness #Gastroparesis #JTube #TubeFed #FeedingTube #Tubie #FeedingTubeLife #Valentines #MCAS #EDS #EosinophilicEsophagitis #Disabled #DisabledSky #Disability #Spoonie #ChronicIllness

A photo of Noelle’s filled flush and feed bags laying on a white blanket with her blue Covidien Kangaroo Joey pump in front of the bags. Her flush bag is on the left and decorated to say “better days ahead!” With a sun and a heart next to the words. Her formula bag is on the right and says nourish to flourish with a doodle of green grass and a pinkish/purple flower.

Sometimes when you’re having a bad week, you decorate your feed and flush bags to encourage nourishment ☀️ ❤️ 🌸

#Gastroparesis #FeedingTube #JTube #TubeFed #NourishToFlourish #Disabled #ChronicallyIll #POTS #EDS #MCAS #EosinophilicEsophagitis #Spoonie

Why is my hr 110 when I’m lying down 🥲😭

Might need to run some fluids before starting my day💧

#POTS #POTSie #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #InappropriateSinusTachycardia #IST #Disabled #DisabledSky #Disability #Spoonie #SpoonieSky #JTube #Tubie #FeedingTube #ChronicIllness

A mirror selfie of Noelle, a white female with glasses and blonde hair, smiling while looking at her phone. She is standing in her bathroom wearing a black Doctor Who TARDIS shirt and blue leggings. The shirt is tucked under her sports bra exposing her abdomen. A dangle J-tube is visible on the right side along with a pink circular tubie pad. A few healed incision sites are also visible on her abdomen.

This week is #FeedingTubeAwarenessWeek!

Feel free to ask me questions about being a #tubie and #tubefed. The tube I currently have is a dangle #JTube, but there are several kinds of tubes!

#FeedingTube #AskMeAnything #AMA #Q&A #Disabled #Spoonie #DisabledSky #Gastroparesis #EDS #MCAS #TubieLife

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

Noelle, a white woman with blonde hair and glasses, is standing in her bathroom next to her IV pole. She is wearing a teal tshirt and shaking two bottles of formula.

Noelle, a white female with blonde hair and glasses, is leaning on the counter with both elbows and in one hand she holds a 60cc purple syringe. She is smiling and wearing a gray Tshirt that says “my tummy hurts”

Noelle, a blonde female with glasses is standing in her bathroom and holding her formula and flush bags in one hand and her feeding tube pump in the other. She is smiling at the camera and wearing a black tshirt that says “we all belong”

Feeding tube awareness week starts February second!

Have any questions about feeding tubes or life with a tube? Comment below!

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

How I feel trying to rally and get things done when my body decides it’s had enough 😭

#NEISVoid #Spoonie #Disabled #DisabledSky #ChronicMigraine #POTS #EDS #Gastroparesis #TubeFed #FeedingTube #JTube

Visited the medical vampires today and had 10 tubes of blood taken ⚕️🧛🏾‍♀️

#NEISVoid #Disabled #Spoonie #ChronicIllnessLife #POTS #EDS #MCAS #Gastroparesis #Tubie #TubeFed #JTube #FeedingTube

cw: medical talk

Feeding tube win: my previous button tubes kept leaking when I drank anything by mouth. I’ve switched back to a dangle tube and the leakage is basically 99% resolved. I CAN ENJOY TEA AGAIN ☕️

#Gastroparesis #FeedingTube #JTube #Tubie #TubieLife #NEISVoid #Spoonie #Disabled

I have both physical therapy AND brain therapy tomorrow morning. Ya girl is gonna be Tired!

(I should probably set up fluids now so I don’t have to do it at 6am….)

#NEISVoid #ChronicallyIll #Spoonie #Disabled #DisabledSky #EhlersDanlosSyndrome #EDS #POTS #Gastroparesis #TubeFed #JTube #Tubie

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.

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