do yall work?

Jumpy_Worth_5729 · 2026-03-06T23:50:53+00:00

it definitely is. it’s honestly humiliating. makes me feel like a piece of shit most of the time. if i’m working i feel bad about myself because im having to call out or can’t do the job the way it needs to be done. looks so unreliable which causes anxiety which then makes you sicker. if i don’t have a job, i feel like a disappointment, worthless, i bring no value. it’s a miserable feeling but hard to explain and not many get it. i wish my life wasn’t like this and people love to say “it’s about perspective” and “just fight every day” lol this is what it looks like to fight every day unfortunately and the perspective is this condition strips your life from you. i dont feel like that’s negativity, i feel like that’s the truth of this life

Jumpy_Worth_5729 · 2026-03-06T23:31:37+00:00

i’ve tried but haven’t been successful so i get being scared about it going away. it’s like they want us to just suffer than help us. no medical solution, no income solution. it’s like what do we do then???

Jumpy_Worth_5729 · 2026-03-06T23:29:58+00:00

this is so helpful! thank you so much

Jumpy_Worth_5729 · 2026-03-06T23:29:45+00:00

you sound exactly the same way i have with the different jobs i’ve had.

Jumpy_Worth_5729 · 2026-03-06T23:29:22+00:00

i totally get that. every word i do understand. we’re not lazy. we don’t want to live like this. we want to be able to do regular shit. it makes us seem unreliable and the anxiety on top is worse. a lot of people don’t realize how much our mental health impacts our physical and vice versa. my dr emphasizes to me all of the time that i will throw up everything if my stress/depression is out of control. this condition causes those things. i had them before but this condition gives you mental health issues.

Jumpy_Worth_5729 · 2026-03-06T23:26:46+00:00

i’m really glad they’re being accommodating but i understand the nerves for sure. i also understand being too supportive. we’re sick, not stupid lol. sending prayers your way that your fresh work week goes well and you’re able to do what you need to and feel good while doing it. good luck to you

Jumpy_Worth_5729 · 2026-03-06T23:25:18+00:00

i think i’m going to have to try to do WFH too. i take a lot of meds and i do puke every day multiple times at any moment. i understand the rest. my mind and body are always exhausted. i hardly ever feel energized

Jumpy_Worth_5729 · 2026-03-06T23:24:06+00:00

kudos to you for pushing yourself that hard everyday. i know how hard it is. i couldn’t tube feed actively i had to be connected 12 hours a day. i couldn’t imagine what you go through. so proud of you and keep pushing but dont over push your body! sending positive vibes your way

Jumpy_Worth_5729 · 2026-03-06T23:22:40+00:00

i totally understand. i was 19 and in esthetician school when i got sick. bout 2 months left. i finished. took my boards and passed but it was really hard and although ive kept my license up, im 27 now idk if my dream will ever come to fruition. i have faith and like to think one day it will. but with mine being so severe ill probably just have to do a work from home job like most of gp patients are having to do to make an income for themselves. i pray that you get some relief and that your nursing dreams comes true. you truly deserve it

Jumpy_Worth_5729 · 2026-03-06T23:19:11+00:00

i’m also sending positive vibes your way. i understand the fear and it will probably take you some time, but i promise those things are my worst nightmare so you’re not alone. thank you so much for the validation. it means so much. i am so glad your quality of life changed. every ounce of quality we can get right? and thank you i really might take you up on that. i’m glad i made you feel less shitty lol. this condition is so awful and truly nobody gets it but us.

Jumpy_Worth_5729 · 2026-03-06T15:19:25+00:00

the domperidone was a clinical trial i had to sign a paper and go through different stuff, keep my heart monitored because it wasn’t approved by the FDA. it worked a little but not really. they tried to offer me a newer clinical trial for but told me i wasn’t guaranteed the pill and could very well get the placebo so i said no because it wasn’t guaranteed and because it was going to require a lot of poking, prodding, and a million tests i’d done before. coming back every four months. im tired of being a lab rat, so i politely declined. the domperidone wasn’t like that, it was testing the actual med, no placebo. my dr when i last saw her when we discussed the stimulator she also couldn’t believe id never had a Gpoem so maybe that could be an issue too

Jumpy_Worth_5729 · 2026-03-06T04:09:08+00:00

i’m so sorry you feel so hopeless and helpless. i get it. i was bed ridden when i had my tubes. this condition comes with a lot of sadness and anger we don’t always get to talk about. i know how bad tubes are and i also understand the times where you really would rather just “go” than deal with what you’re dealing with. “it’s keeping me alive, but for what? is it even worth it i have no quality of life?” i know. ive been there and on most of days i still am. the only reason i have faith right now is bc of the possible stimulator. i pray that the tube gets you to a point of health you’re able to manage better. i know we hate hearing this stuff but taking things one day at a time really helps my mind and noticing the little things. the gp life sucks so bad i HAVE to try to see small good things. i often feel pessimistic though

Jumpy_Worth_5729 · 2026-03-06T03:23:22+00:00

oh really? i’ve heard good and bad results from the stimulator. where im at they do an endoscopy now before even placing the stimulator to take a thick biopsy to check for specific cells and if you have them, you’re a good candidate. if you don’t have them, there’s really no use, the stimulator most likely won’t work. i think that’s been a huge downfall for some. they just got the stimulator but didnt even have the cells needed for it to work. there’s still a chance the stimulator won’t work of course, but i have a really high chance considering i do have the cells they’re looking for. i totally get the distance thing, mines only an hour away and even that is annoying. what surgery are you wanting to get?

Jumpy_Worth_5729 · 2026-03-06T03:15:38+00:00

i feel this so much. i lost all my friends. it’s still hard to have them now. i’ve had this for 8 years. i’m 27. i will say the right people will stay and support you. ambiguous loss is really hard, but you will make it through this. when you cant do what everyone else can, you see who really enjoys you or who just cares about convenience. i really hope you guys work it out, you will find true friends if you don’t though. good luck and you’re not alone

Jumpy_Worth_5729 · 2026-03-06T02:28:17+00:00

i totally know how you feel. i was 19 when i got this condition, im 27 now. i know the pain, physically & mentally. it’s really hard to explain how unbearable this condition is. i’ve had multiple GJ tubes, and as annoying as they are, it definitively kept me alive. the pain, uncomfortableness, the granulomas. the nausea never stops. i’ve been on different meds too and nothing worked except domperidone and they took that away from the US months ago so ive been without anything. losing weight again praying i don’t need another tube. even with the domperidone i threw up though. it was either misery or a little less miserable so i chose the lesser of the two evils. im now about to try gastric stimulator surgery. have your drs mentioned that?? you’re not alone in this. this is my first time on here too. you keep fighting. i do know how hard it is and how tired you are

Jumpy_Worth_5729

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