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I need a packing list

Hi! I’m chronically ill and it’s looking like I’ll be in the hospital for the fourth time this year and I still don’t have a packing list, if y’all could help me out that’d be great! #Gastroparesis #tubie #SpoonieProblems

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Long covid is killing me….

I just wish people wouldn’t blow me off. Or act like my feelings are too big. Or get so uncomfortable when I try express what I am going through that they get off the phone or rush the conversation. I get it’s uncomfortable, unpleasant, scary, taboo. Whatever word you want. But it is happening and it is happening to me. I need my people. They act like they can’t handle it but what about me? They may say sound selfish. But sorry your feelings are uncomfortable but I am planning my funeral so my parents know my wishes should that happen. Like get a backbone and be there!

Friend: some people can’t handle death… they can’t comprehend it.

I can’t either so it is frustrating when trying to process and people are like I don’t this well. Well fuck you! I need my people. That is my biggest fear about dying. Not having my people, being without my twin, who will comfort mom who is having a nervous break down, who will take care of dad while he is aging, who will be there to hug me in the darkness? And the darkness isn’t here yet and I am already alone…

#Gastroperasis #COVID #longcovid #longhauler #Stroke #Dystonia #Seizures #tubie #PegTube #StarvingToDeath #IronDisorder #ImmuneDeficient #Death #FinalWishes #darkness #BigFeelings #TooBig #iamvalid #valid #LeftBehind #DoNoLeave #Twin


Tube feeding #tubie #Gastroparesis

Hi! I’m currently being fed through a GJ tube because I throw up any food I eat by mouth. My J port allows my liquid feed to bypass my stomach and go to my lower intestine/ small bowel and my G port allows me to suction the food from my stomach if I feel like I’m going to vomit. I’m trying to give my stomach time to heal and also retrain my vagus nerve and help my gastroparesis. I am struggling because I have to do very little calories an hour over a 12 hours because if my stomach gets full, I’ll vomit. Does anyone have any advice on how to curb cravings and how to deal with the hunger?


NJ Tube Fears

Hey guys :)

I have moderate-to-severe intestinal dysmotility, and mild Gastroparesis. After months of weight loss and pain and discomfort, my team has decided the time has come for a feeding tube to be placed. I'll also be starting a motility med, but that may make my heart condition (Long QT Syndrome) worse so I'll be in the CICU for a bit as well while we watch that. I'm also apparently an "ideal candidate" for refeeding syndrome, so watching that as well. The idea is that the med combined with pre-digested food will be something my body can handle, and that I'll get off the tube within a few months and go back to my liquid diet sans feeding tube.

Frankly, I'm scared. Terrified. I've never had a feeding tube before, never had a central line or anything like that, and I have no idea what to expect. I know it'll suck during placement and the first few days, but according to the internet the discomfort will pass relatively quickly. I'm much more concerned with the public's perceptions. As a 15-year-old ambulatory wheelchair user, I'm used to stares, but I know they'll only get worse when I have a tube clearly pasted on my face. I'm also worried about feeding in public, flushing, delivering meds, everything that's going to be a new part of my life. I have an invisible illness, and I'd like it to remain that way. This changes that drastically.

I'm at the point that I need to be admitted now. However, my hospital is currently overrun and having a Flu outbreak, so I got deferred for a few days. I go in on December 30th for placement. It's better than Christmas inpatient anyways.

I guess I'm posting here in the hopes that someone else will get it. I'm scared, and I don't know what to expect. If anyone has any tips/advice they'd be much appreciated.

#EhlersDanlosSyndrome  #PosturalOrthostaticTachycardiaSyndrome  #dysmotility  #ChronicIllness  #ChronicIllnessEDS  #Fear  #njtube   #tubie   #InvisibleDisability   #InvisibleIllness   #LongQTsyndrome