I’m up to 13 medical phone calls for the week and there’s still one more day to go. Being disabled takes so, so much time and energy… energy that we often lack as a side effect of being, ya know, disabled 🫠
#Disability #Disabled #ChronicIllness #ChronicallyIll #Spoonie #NEISVoid #EDS #TubeFed
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
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
🎉🎉🎉 Finally at the point with my new formula where I am eating all my (usually) overnight portion, all day long. This has taken me five weeks to achieve! Next stop: full calories! (But not fast, I am sure). 🎉🎉🎉 #TubeFed #GJTube ❤️
🥄 Know a spoonie? In 2021 I woke up from a coma w/ a feeding tube. I was NPO for 5 mo. & am alive today thanks to being a #tubie.
P.S. My vinyl decals are 🧼 Dishwasher safe 🌞 UV resistant & avail. in 2"-6"
#ChronicIllness #DisabledArtist #StickerShop #InvisibleIllness #ehlers danlos #tubefed #tpn
A black and white photograph of a woman, visible from behind, kneeling in front of a television. Photographed with a Sinar F2 4x5, Nikkor 210/5.6, and Ilford HP5+.
Tube Fed "Channel 27" (2006).
#filmphotography #largeformatphotography #blackandwhitefilm #4x5 #tubefed #benrains
A black and white photograph of a woman lying in front of an old TV set showing static. A ghostly image of her is reflected in the screen. Photographed with a Sinar F2 4x5 and Ilford HP5+.
Tube Fed "Channel 23" (2006).
#filmphotography #largeformatphotography #blackandwhitefilm #4x5 #tubefed #benrains
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 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
A tube clip (left) and a port cover (right). Both are mainly blue/green, and both feature chickens and yellow snaps. In the background is a yellow envelope.
Made two things for an #etsy shop order! Had so much fun making this #portcover and #tubeclip!
#gastroparesis #chronicallyill #tubefed
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
A sticker of a capybara in front of a green bush with an orange on its head. It says “built different (like incorrectly, I think)”
My friend ( @stillpoetryphoto.bsky.social ) bought me this sticker today and it is DELIGHTFUL 😂
It’s from MultiColoredMind on Etsy!
#Disabled #Disability #NEISVoid #ChronicIllness #Spoonie #WheelchairUser #TubeFed
Tomorrow is a double appointment day and unfortunately, I have to leave the house for both of them (boooo). Fingers crossed they listen to my concerns and we come up with treatment plans 🤞🏻
#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #ChronicMigraine #EDS #POTS #Gastroparesis #TubeFed
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
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
Piggybacking off of this.
Ask me anything!
#FeedingTubeAwarenessWeek #FeedingTube #TubeFed #GTube
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
Does anyone have any books or movie recs for characters with feeding tubes? I legit haven’t seen any outside a medical context(i.e. the fault in our stars,etc) or there’s only children’s books.
#disability #tubefed #tubefeeding #booksky💙📚
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
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
