Dysmotility, Anyone? (Gastroparesis & hEDS) The word paresis is of Greek origin and it indicates letting go of or weakening or slackness of muscle.  It refers to partial paralysis rather than a complete stopping of movement (para…

It's not good when things are slowed to a stop. Here is what Chinese medicine can do for you in such instances.

#BlogPost #EDS #MCAS #POTS #Gastroparesis #ChronicIllness #GutHealth #HolisticHealth 💕 #Wellness

Noelle smiling while wearing a crop top. Her surgical abdominal tubes are visible.

A friendly reminder as it gets warmer: don’t tell people with visible medical devices to “cover up”. We deserve comfort, too. Don’t shame us for the medical devices keeping us alive.

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

a man in a chef 's hat is cooking while a stuffed chicken looks on ALT: a man in a chef 's hat is cooking while a stuffed chicken looks on

It's getting harder to find solid food that is REASONABLY priced and that doesnt have triggering allergens!

I miss things like eggs. It was a clean protein I could eat without issues. Eggs should not be a treat. Eggs deserve better.

#chronicallyill #Gastroparesis #disabled #MCAS #foodissues #eggs

“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

Don’t worry, I only have 7 appts scheduled for this week and another 7 next week 🫠

AND!! Only 6 phone call so far this week…not sure how many portal messages though 😥

At least I have my audiobooks and podcasts 🎧

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Gastroparesis #EDS #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

My lower intestine's swollen. I have had 3 days of it. Body refuses to keep anything in. It's excruciating. I have stopped eating solid food & even soup is too much. FML.

This is what happens when you have "gut problems". #Gastroparesis, #intestinalissues, hope my meds come in soon. They are late.

Friends, I'm consulting the hive mind here, and actively want your feedback. If you have #MCAS and/or #gastroparesis would you be willing to share your symptoms and/or what process led to you getting diagnosed? V

Gastroparesis information (APDA, March 2026)

Our friends at the American Parkinson Disease Association (APDA) recently posted this helpful article on #gastroparesis:

www.apdaparkinson.org/article/gast...

First 2 IV fluid treatments done. I’ve been chronically dehydrated for so long at this point that my body is not happy about the fluids. Im in pain. Heres hoping I can switch to Sub Q fluids at home in 3 weeks when my IVs are finished. #chronicillness #health #gastroparesis

Dog in bed

Dog and gal laying in bed.

Little bro being less than 8 inches from me at any given moment when I'm feeling like hot garbage even though he usually sleeps on my sofa like we're in a trial separation but both names are on the mortgage #dog #gastroparesis #Imisssolidfood

“It’s in my Blood”: Sarah Frison. A pastry chef with dysautonomia, gastroparesis, gluten intolerance and allergies. Read the series about people with chronic illness, their passions, and talents. Read the blog.

"I love using #AcrylicPaint ..It’s also easier to find #allergen -friendly than oil #paints. I’m seriously #allergic to certain solvents and binders, so I need to be careful with what brands I buy.": buff.ly/GWpkFjJ

Featuring: sarahfrisonhc
#ChronicIllness #gastroparesis #disability #hobbies

Too many times. #gastroparesis

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

A person with nausea/vomiting/extreme fullness is diagnosed with #gastroparesis via positive gastric emptying study. If negative and no other cause found, the dx is "functional dyspepsia." Some experts see 2 different conditions, others say it's a continuum that needs a new name.

What Is Delaying Movement in Managing Gastroparesis? Differing perspectives among gastric motility experts and regulatory roadblocks impede clinical care, but some companies are moving forward.

Most healthcare professionals likely know that there's some complexity in the diagnosis of #gastroparesis and that only one drug is approved in the US to treat it. But, there's a lot more to it... www.medscape.com/viewarticle/...

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

cw: discussion of body size

People leave comments wishing for a condition that causes them to be skinny. #Gastroparesis is not fun or worth the pain. A common side effect is weight loss because we can’t get enough nutrition. We’re skinny because we’re starving. We don’t want this.

#NEISVoid

Collapse Yesterday was a day of total and complete system failure. I slept all night Sunday night, most of yesterday and all night last night. The part of the day I was awake yesterday I was a sobbing mess in pain and an emotional wreck. I really didn’t feel well at all last week and it … Continue reading Collapse

Collapse #chronicillness #Gastroparesis #health

We Can Make an Impact. Create a national gastroparesis diagnostic and care pathway

Create a national #gastroparesis diagnostic and care pathway c.org/r8xbTyyjYK #EhlersDanlos #EDS #diabetes

Friends with #Gastroparesis. I've been taking Linzess for years. It helps a lot, but was giving me stomach cramps. Recently, my Gastro added Motegrity. It not only helps a ton, but I no longer have the cramping & severe pain in my stomach. #Spoonie

A Wellness Guide for Gastroparesis: Essential Resources, Information, and Coping Strategies Resources for those coping with gastroparesis. Diet tips, wellness strategies, support groups, and other resources for the gastroparesis community.

Some strategies for dealing with gastroparesis.

#GutHealth #Gastroparesis #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

Oh nooooo! I am the wrong kind of green today. Not the fun school colors kind. The nauseated ready to vomit kind. The weird thing is it’s been going on all day. I woke up and immediately took nausea medication. Then I took morning meds and some like acid reducing stuff. Then, I ate a teeny bit … Continue reading Oh nooooo!

Oh nooooo! #Anxiety #chronicillness #Gastroparesis

From Ehlers-Danlos Syndrome and Gastroparesis Diagnosis to Successful Feeding Tube Business Owner Anna Hörster’s Inspiring Journey

Yes, gastroparesis can be quite serious and--no surprise--it is not necessarily rare amongst the hypermobile community.

#EDS #MCAS #POTS #Gastroparesis #ChronicIllness #GutHealth #HolisticHealth
💕 #Wellness

Anxiety stinks! I have just been ANXIOUS about so many things. It’s been unreal. It’s also causing me to “freeze” in the “fight, flee, freeze” scenario. My closest friend is having surgery to repair physical damage from an assault twenty years ago. It’s taken her this long to be brave enough to see a doctor about it … Continue reading Anxiety stinks!

Anxiety stinks! #Anxiety #chronicillness #Gastroparesis

Dysmotility, Anyone? (Gastroparesis & hEDS) The word paresis is of Greek origin and it indicates letting go of or weakening or slackness of muscle.  It refers to partial paralysis rather than a complete stopping of movement (para…

When your digestion is slow or even just about stopped...

#BlogPost #EDS #MCAS #POTS #Gastroparesis #ChronicIllness #GutHealth #HolisticHealth 💕 #Wellness