#gastroparesis
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anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me
#My orthostatic tolerance is currently zero#POTS#postural orthostatic tachycardia syndrome#me/cfs#fibromyalgia#chronic illness#disability#migraine#gastroparesis#chronic pain#chronic fatigue#chronic fatigue syndrome#myalgic encephalomyelitis#spoonie#mast cell activation syndrome#MCAS#dysautonomia#chronic migraine#joint pain#hEDS#ehlers danlos syndrome#hypermobility#hypermobile ehlers danlos#interstitial cystitis
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Help a chronically ill person eat!
Hey im struggling to eat any soilds due to being in a pretty bad chronic illness flare. I cant keep anything soild down so I need liquid nutritional shakes to help replace the calories im not getting from soild food. The only brand my stomach agrees with costs $30 for 6 shakes so Im really not in a place to buy 2-4 boxes at the moment.
If anyone could help me get a few boxes of shakes that would be amazing! $90 would get me 3 boxes!
CA: $sleepyhen
VN: wildwotko
Dm 4 Paypl
#chronic illness#chronically ill#heds#gastroparesis#spoonie#im living off of broth and yogurt so if you can help
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February 6-10 is Feeding Tube Awareness Week!
The beginning of February was selected because of its proximity to Valentine’s Day, because we love our feeding tubes. This is my first year as a tubie and I’m looking forward to learning more about feeding tubes and the conditions that necessitate them! I do love my tube, it saved my life!
I am an adult with a feeding tube, and a lot of the awareness and attention surrounding these medical devices is child focused. A lot of children depend on tube feeding to thrive, but there are plenty of disabled adults that depend on tube feeding as well! In 2017 there were approximately 438,000 people with feeding tubes in the US, and 60% of them are adults.
I have gastroparesis, which directly translates to paralysis of the stomach. My stomach doesn’t grind food the way it’s supposed to, and my pylorus sphincter at the bottom of my stomach doesn’t open well to pass food and liquids through. While gastroparesis has a range of impact and severity, I have a very severe case, and I am no longer able to eat or drink by mouth for nutrition. I am 100% tube fed. I went into starvation ketoacidosis prior to my placement.
Tube feeding, or enteral nutrition, has several different forms. There are nasal tubes and there are surgical tubes. Nasal tubes can go into your stomach (NG), duodenum (ND), or your jejunum (NJ) and are typically for short-term use. They can be used for acute illness and malnutrition, or to trial tolerance of enteral feeding. Surgical tubes go into your stomach (gastrostomy/G) jejunum (jejunostomy/J) or both (gastrojejunostomy/GJ) and they’re for chronic conditions and/or long-term use. I have a GJ tube and it looks like this:
I have a GJ tube so that I can bypass my paralyzed stomach and feed directly into my intestine. I can also drain stomach contents from the gastric port, which allows me to drink liquids and drain them out before they make me sick. Different people will have different tubes depending on their diagnosis and prognosis! Some people have one form of tube, and others have separate G and J tubes.
There are over 400 conditions that can require tube feeding. Some of those include
Gastroparesis
Intestinal dysmotility
Cancer
Intestinal failure
Inflammatory Bowel Disease (Crohn’s disease and Ulcerative Colitis)
Cerebral Palsy
Congenital/chromosomal conditions
Cyclic Vomiting Syndrome
Ehlers-Danlos Syndrome
Several trisomy conditions
Prematurity
Other conditions not mentioned in the link above include
Hyperemesis gravadarium, severe nausea/vomiting during pregnancy to the point of significant weight loss and electrolyte imbalance
Acute trauma requiring bowel rest
Eating disorders
This week, I want to promote visibility for disabled adults with feeding tubes. I didn’t know anything about enteral nutrition until I got sick. Once I had a confirmed diagnosis of gastroparesis, the reality that I was facing forced me to learn and adapt quickly to a completely life changing treatment. I know there are other adults like me, as well as tubie adults that used to be a child with a tube!
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no offense to able bodied people, but when i say i’m tired and you say you’re tired we are NOT talking about the same thing
#at the end of my rope with this#chronic fatigue#chronically ill#chronic illness#ehlers danlos syndrome#gastroparesis#chronic pain#chronic migraine#is this controversial lmao
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my disability: disables me
me: :0
#chronic illness#chronically ill#spoonie#disability#disabled#disablity#postural orthostatic tachycardia syndrome#chronic fatigue#chronic pain#gastroparesis#pots syndrome#autism#overstimulated
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That chronic illness feeling where you don't want to die soon, but the idea of spending another 60 or so years in this body makes you want to scream.
#i don't know if i can take another 60 years of this#chronic illness#idiopathic hypersomnia#gastroparesis#ehlers danlos syndrome#bpd#chronic pain#borderline personality disorder#dysautonomia#p.o.t.s#i hate this#im just having a rough week with my mood#I'll bounce back#tired
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A hangout at “the sea” 🌊🌤️🌈🌺
[ID in alt-text] Gali, Rawiya, and Hiraya!
#my art#art#original characters#disabled artist#disabled oc#oc#illustration#disabled and cute#visually impaired#systemic lupus erythematosus#alopecia areata#gastroparesis#amputee#osseointegrated prosthetic
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Everyone with gi issues deserves a kiss on the forehead right now
#chronic illness#chronic pain#cripple punk#disabled#gi issues#undiagnosed#ibs#chronically ill#gastroparesis
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Getting diagnosed with a chronic condition is easy! Just follow these steps:
Have symptoms
Schedule doctor visit
Wait indefinitely
Repeat
#spoonie#disability#chronic disability#disabilities#spoonie life#ibs#lupus#ibd#gastroparesis#chronic uti
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That chronic illness feel when you are in so much pain but you don't have the spoons to get up and get your pain medicine so you just lie there. In pain.
#chronic illness#chronic pain#chronic fatigue#chronically ill#ehlers danlos syndrome#pots#potsie#fibromyalgia#spoonie humour#spoonies#spoons#spoonie#spoon theory#spoonie pain#low spoons#gastroparesis#fibrosucks
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I love how people with chronic pain can be at extreme levels of pain and just be like “My body is ouchie”
#it’s me my body is ouchie#chronic pain#chronic illness#disabled#fibromyalgia#me/cfs#gastroparesis#disability#migraine#postural orthostatic tachycardia syndrome#chronic fatigue#chronic fatigue syndrome#post exertional malaise#pwme#pots#spoonie
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Shout out to disabled people who are, ya know, existing with symptoms - whatever they may be. Who are exhausted/fatigued some (or all) days. Who are in pain. Who live in a world that doesn’t understand them, a world that isn’t built for them.
I hope you have the time to cuddle your favorite stuffed animal. I hope you watch an amazing episode of your favorite show. I hope you meet a doctor that smiles and sees you and works with you. Much love to you all.
#chronic illness#autoimmine disease#autoimmune#chronic fatigue#spoonie#chronic pain#spoonie life#chronic migraine#sjogrenssyndrome#raynauds#postural orthostatic tachycardia syndrome#erythromelalgia#nerve pain#gastroparesis#tmj disorder#disabled#ableism#disability
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"it is a trauma to have a basic need like food taken from you" brb crying from validation
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when will my body run out of things to go wrong with it
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I always joked for YEARS that Tums is “nausea chalk” as a silly little joke.
I knew that Tums are made up of calcium carbonate, plus some sweeteners and flavorings and color.
Regular chalk is just straight up calcium carbonate. So…
Tums ARE nausea chalk!!!!
#what do I do with this information#chronically couchbound#silly#disability#disabled#nausea chalk#tums#nausea#ibs#gastroparesis#tummy issues#nauseous#chronic nausea#spoonie#low spoons#spoon theory#spoonies#spoonie community#no spoons#no spoons only knives#dietary restrictions#stomach issues#chalk#calcium carbonate
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