u/bella4him1

So long story short my mom is wanting to help me make a cart for upstairs that has a lot of products to manage my hEDS, pots, and stuff for a feeding tube I'm getting in the near future, and I'm pulling a blank on things that would be helpful, I just was wondering what y'all use to manage your EDS? like I just can't think of what to put on said list...my room is down two flights of stairs so ideally it would just be things I would need in the short term that I can't go all the way downstairs to get if I need them, but I can't think and would appreciate some insight :)

My doctor keeps calling the NJ tube a "surgical procedure" and today said "I wonder if a feeding tube would help with your pain, whether it's food orally or through a tube it goes directly into your stomach and either are going to cause pain"

I just like keep politely correcting her but I'm like girl what it's a five second Google search nj and ng are totally different and I'm just laughing bc otherwise I'll cry (literally all my doctors are willing to let me starve to the point of permanent damage before they even attempt to try getting a feeding tube covered by my insurance and I don't understand why they won't at least try before just insisting it won't work, I understand insurance is prickly and they don't listen but seriously what's the harm in attempting to submit something like worst case it'll just come back that they need more evidence and then I'll be like well at least they tried, instead they're just like refusing)

Idk this whole thing is stupid, I don't want a tube, I need one yk it's not fun for me and if they even for a month had any experience with malnutrition they would care a lot more about getting me help asap

I'm currently actively decomposating, I'm barely tolerating food orally, I've asked three fucking doctors for help and nobody, LITERALLY NOBODY not even my primary can help me because my labs are "normal" and they don't have enough evidence that I'm malnourished. I'm not mad at my providers as much as the system as a whole, I asked if she could order a feeding tube and she said no I don't have enough physical evidence and insurance won't cover it until I do, and I asked at the behest of my nutritionist if she could order IV fluids and she said no I don't have enough evidence to do that either and "they aren't long term" so basically I'm entirely fucked unless my labs are starting to decomponsate, which based on my last set of labs I doubt it (even though I feel like dogshit and I can tell I'm physically deteriorating

Idk I'm just so fucking done with this shit.

Specifically my primary said "according to (my) last set of labs and just in general, (I) don't meet 2/3 of the criteria to diagnose me with being malnourished", even though multiple of my doctors agree I need a feeding tube

How loud do I have to scream that I need help for someone to actually be able to help me I'm exhausted and I'm so fucking angry at this stupid healthcare system. I don't want a tube, I physically need one they act like I'm doing this for fun???? I hate this shit

Just needed to vent because I'm so fucking over this shit and I'm tired of fighting just for everyone to say sorry I can't help you :(

Edit: So I'm looking at those clinical notes that my primary mentioned which said I don't meet the criteria for malnutrition (2/3 points I don't meet)...MY NUTRITIONIST DIDN'T NOTE ANYTHING I SEE HER VIRTUALLY NO SHIT I DON'T MEET THE CRITERIA SHE HAS NOTHING TO RECORD BECAUSE I DON'T SEE HER IN PERSON?! I'm gonna go crash out rq wtf

I'm trying to figure out if I can start it, I saw a book 3 coming out in December and if that's the case and it's unfinished (even though it's said to be a duology so I'm very confused) I'd rather wait to read them when it's done

I can't find any clarification on the authors socials 😭

Edit: apparently it was a kindle glitch I got my answer lol

I thought each bug off would have different rewards, so I have five items I just want to get rid of, I could sell them but wanted to see if anyone here wanted them first :)

- butterfly backpack

- bug wand

- spider door plate

- butterfly wallpaper

- bug cage bag

Just want to get rid of them idk

Idk I think about it a lot, it's not that deep but like how can they afford coffee, snacks, books, etc when they.... don't do anything all day lol

It's just an interesting thing to think about, maybe they're all into some shady business shit lol

So my nutritionist recommended me to talk to my PCP about like IV fluids because I'm malnourished and struggling to get liquids (and food but) and she said it might help my nausea and thus my eating and also my POTS to get IV fluids in the mean time while I wait for an nj tube (she also said it might help me avoid a tube?) but I'm a little confused on how IV fluids would even help with my eating? I doubt it but I'm like open to trying ig just wondering if anyone has had luck or like symptom relief with that ig

I've messaged three separate doctors, I'm malnourished and losing weight and barely able to eat, about is there anything I can do short of waiting two (almost three) months in misery to get in with advanced endoscopy, and the ER and stuff, because I don't want to have to go to the ER, and I'm just frustrated. I've messaged three separate doctors, explained the severity of my symptoms and my misery to them asking for help and each and every time it's always "I'm sorry your symptoms are getting worse" but not sorry enough to actually be able to help me and I'm just tired of having to beg for help nutritionally while I'm actively starving

Idk I know my doctors are doing the best they can and they can't do certain things but like wtf man how many times do I have to say I'm miserable, I'm starving, please help me I can't wait until late September, for literally anyone to do literally anything besides "go to the ER" I'm so exhausted, like I will if it's the only option but like it shouldn't be the only option and furthermore I wish it felt like anyone cared? I'm just frustrated with the system ig

Just need to vent ig I'm so fucking done with the healthcare system as a whole

So for context I've done and failed with so many treatments that the next option is surgical and procedural treatments, multiple doctors have recommended supplemental nutrition (even temporarily but I doubt it'll be temporary) because I'm malnourished and losing weight and my oral intake continues to go down every month.

So I saw my GI, talked about all that and she was like yeah I definitely think a feeding tube is a realistic option at this point and she referred me to advanced endoscopy who knows more about feeding tube stuff and can talk about procedure stuff, she said let me know if they can't get you in before August I'll talk to them, low and behold they can't get me in until September 30th, I can't wait that long nutritionally I'm so fucking miserable I just can't. So I tell her yeah they can't get me in until late September only to be told she can't all of the sudden help with that, and she was like get on a wait list (I am) and go to the ER if it gets too bad. My most recent blood work doesn't indicate malnutrition which is actually insane to me considering how awful I feel but whatever. So I was like realistically the ER won't take me seriously due to my weight and they'll just not help, so I reached out to my PCP (which my GI also recommended because I would need someone who would help with my feeding tube and she might be willing to) asking for a direct admission which I feel is more guaranteed to help, and a nurse responded that not only is she not in the office for a few weeks but also I shouldn't be reaching out to my primary about feeding tube related stuff because "primaries don't help with that" and then she told me to wait for my late September appointment. I'm at a loss, I understand it's not like any one person's fault but like I'm miserable, malnourished and losing weight and I'm barely able to eat and I'm like genuinely wtf do I have to do to get help??? I'm so fucking tired of this shit I'm gonna cry

We had slow cooker pulled pork on the fourth of July and I had a tiny bit then and then a tiny bit today first thing in the morning thinking surely it'll be fine I barely had any

Alas it is not and I'm miserable ;-; I just want pulled pork damn

So this past week I've had multiple conversations with multiple doctors about the fact that I need a feeding tube/nutritional support because nothing has worked so far treatment wise and my oral intake is so low it's becoming like a problem

Initially I got a referral for advanced endoscopy, which I was told would help me with procedural treatment options and talk to me about needing a feeding tube because my GI doesn't know enough about it to comfortably do it, which is fine. She tells me to make the appointment but if it's being scheduled past August let her know and she'll talk to them about getting me in sooner. So I make that appointment (for September 30th) and I tell her I'm scheduled past August. She says cool, recommends me a CT to rule out vascular compressions that could explain my pain, and I get that done, they find no vascular compressions but a lot of little weird things that my GI didn't address so whatever ig. So I messaged her and asked her hey so I'm assuming I should keep my appointment with advanced endoscopy, but are you able to talk to them about getting me in sooner like you said? She says she can't. I'm dealing with intense malnutrition and fatigue and I'm barely able to eat anything without extreme pain and nausea, meds don't work (I'm trialing motegrity but it's been two weeks and literally nothing has happened so she wants me to keep on it and maybe up the dose, which I mean I doubt that'll work but whatever). I just need to know how to like manage until September fucking 30th because I'm at my wits end and I'm miserable and I thought she'd be able to talk to them to get me in sooner but that's not happening anymore and they might say no to getting a feeding tube which at this point I need and I'm just so stressed out. I just need to vent because I'm tired of this bullshit

Things they found on my CT that apparently are fine bc she didn't mention much about them:

1. Splenomegaly measuring 16.7 cm in length.

2. Minimal nodular thickening of the right adrenal gland.

3. Mild atelectasis.

4. Tiny fat-containing periumbilical hernia.

I get its all like minimal I'm just like at least mention it girl it sounds not good lol

I give up for today

I feel like I'm going crazy. I tried reglan, it didn't do jack shit for me, I literally couldn't feel it nothing happened AT ALL, motegrity I've been on for a week and I feel no difference, my beta blocker for my POTS (the first one, I'm trying a new one but again it doesn't feel like the new one is actually doing anything) literally did nothing for my symptoms and I'm just like going insane and idk if something is genuinely wrong with me, it feels like every time I take a medication (besides maybe Omeprazole) it doesn't fucking do anything and I'm just as miserable as if I didn't take it lol

I just want to scream like come on dude give me something that works just once

I'm trying to get back into drawing via my iPad. It's a slow process bc I'm quick to get overstimulated and frustrated and all that but I'm in so much pain that anytime I want to draw I can't because it'll make my already hellish pain 10 times worse. My pain is mostly in my shoulders/neck, all down my back and my hips. I have to sit cross legged in bed and OW yk...I want to get like a bed table to help with when I just default to shrimp pose, but like there's literally no place in my whole house where I could sit in a comfortable position and draw, no tables no nothing.

I don't know what to do, I want to keep drawing but I'm just wanting to give up at the same time because like there's seemingly no fucking option to reduce my pain and enjoy my hobby.

I just need any and all tips as far as like does a lap table work, should I get like any kind of accessibility device like please I'll take anything lol

I'm very desperate to enjoy art again it's just my body doesn't want me to ig

I really didn't think I'd be upset, I thought it's fine I'll have a fun drink, go to McDonald's for a soda after call it good but I'm here and I'm like so miserable physically but also I just want more food and I can barely eat the little bit I have and I'm just idk I feel very much like I don't belong. I think I'm just more upset than I thought and also I'm symptomatic so I'm just so overstimulated and uncomfortable and I hate this shit so much

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Just need to cry into a void ig

So I'll start by saying I haven't noticed weight loss, I'm around 450 lbs so while I would assume based on like how much I'm able to eat per day I have to be losing weight (like that's the most realistic outcome I can think of) I haven't noticed it, though people have told me it looks like I am losing weight, I just don't like to weigh myself for personal reasons.

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I got diagnosed with severe gastroparesis in February, and it's been a hard adjustment. I've always loved food and I don't think I'm at a place where I can process that I can't eat as much as I want to, so I a lot of the time force myself to try to eat despite me being in so much pain because of it, that's a therapy thing probably.

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I on average consume 800-1000 calories a day (I used to be able to eat 3× that on average), and oftentimes my symptoms are very severe even just with liquids but I feel like I'm such a liar. I know I deserve nutrition and I physically can't keep up without some kind of help (help I haven't received from like meds or anything) and I'm at the point where I will try just about anything like treatment wise but I need something to help with my nutrition while I do it, because I can't keep starving myself. There are some days where I eat more than usual and it's mostly when I get leftovers and I'm like oh I need to get rid of them and so I convince myself it's fine I'll just deal with the pain because I hate wasting food (which is something I'm working on, it makes sense in the moment and I regret it later).

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I'm just feeling stupid for even saying I need help, I know I can eat I just can't eat enough most days and it's becoming a physical problem for me but on the off chance I have a good day I just don't think I deserve help of any kind. I'm in so much pain and I deal with so much nausea but then I'll get snacky and I'll feel stupid because why tf would I do that and what is wrong with me that I can't just not do it yk

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Idk I just need some support, I don't want a feeding tube but I want a quality of life and to be able to do things after I eat without like crazy intense symptoms and stuff. I'm not vomiting up any food so I oftentimes tell myself it's not that bad, and I've been told my health issues are my fault so many times that I just don't feel I can ask for help. My nutritionist was willing to bring up a tube to my GI doctor.

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I think a lot of the issues I have with like eating too much are because my body is begging me for nutrition and I just have no self control and it's hard to remember sometimes how much it hurts when a food sounds so fucking good in comparison. I've been improving with being responsible but it's hard.

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I just feel silly for even thinking I need a tube because I tell myself it's not that bad so often (me gaslighting myself) and it's hard to process such a huge change and I'm just having trouble adjusting to my limits. In my head I have to be like actively dying/not able to eat anything to receive help or to ask for help of any kind so in comparison I'm not and I don't feel like I deserve it if that makes sense.

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Has anyone else felt like this? Am I crazy? I'm in a crazy amount of pain and nausea writing this because I'm feeling so guilty for eating when I know I need to be but I'm also in too much pain to try most days so idk it's just a flipflop of conflicting emotions, I hope this makes sense.

I'm just feeling bad about everything right now, I have so many snacks and fun drinks that I realistically shouldn't have because they cause me pain everytime I eat them. I have like no self control and having access to food in my room (which I do need to have because my mobility is shit so it's a double edged sword) is making it so hard to say no when realistically I'm in too much pain to have solids? I'm tempted to put said snacks away into a bin for like special use only or once per day/portioned snacks but like idk I don't want it to feel like I'm restricting myself.

I'm at a point where I'm barely able to eat so I should be happy when my body is "nice" (heavy quotations lol) to me but instead I just feel guilty. It was my birthday on the 1st and so I got all these freebies I was planning to eat overtime but I didn't realize how fast a majority of them go bad and I also got taken out to eat and I just feel like I have to get rid of all this food on a time crunch and its very anxiety inducing and then it's easy to actually just like convince myself to finish off something and I'm just anxious about everything and I'm trying to be happy that I was physically able to eat food, but doing so causes me severe pain and nausea so it's hard to feel good about it, and then I just go back into that spiral of "well clearly I don't have a problem bc I didn't vomit up any of this food/I was able to keep it down" even though doing so has very bad consequences for me and idk

I just needed to vent, I hate thinking about food this much and I wish I had more self control because I'm tired of making myself sick but I'm also tired of not being able to eat the amount I wish I could

So I got an iPad and procreate because I want to get back into art, make sticker designs, etc. I would love to do art for living but for now because I'm new obviously it's a hobby. Currently the only place I can work comfortably with support is my bed, and I have a headboard that doesn't allow me to sit against it (there's a shelf on it, open space behind it and I keep stuff on the shelves) so idk how to properly support myself/keep a good posture.

I obviously know about pillows but I keep finding myself defaulting into the shrimp pose because I have nowhere to comfortably sit with support for my back. I have arm supports (a weighted plush under my iPad) but I need help with finding a solution to poor support for the rest of my body. I would really prefer to lay on my side and draw but that's not logistically possible so I need to figure out something if I want to enjoy this hobby.

Right now after 15 mins of sitting up and hunched my entire body hurts and all my joints are angry af

I'm just curious, I didn't like the fruit punch flavor, the blueberry pomegranate was mildly better if I water it down but I want a clear nutrition drink I actually like and I'm just curious to those who have had it does it leave that weird filmy taste in your mouth/have that stevia flavor? Is it "like off brand apple juice" as I've heard so many say?

The only option I can find to try them is $62-72 for packs of 24 or 32 and I don't want to waste that kind of money if I'll end up hating it?? I'm just trying to gauge if it's worth the investment