tubie

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

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

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?

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