hi! I've been struggling since all my health stuff got a lot worse a few months ago and hasn't gotten much better. i at least think i figured out a diet to help my stomach issues and I'm hoping it'll help. i also just got my first wheelchair and I'm hoping that'll help with whatever is going on with my heart. I'm just feeling really defeated cuz i keep trying to go back to work and how i used to be and everytime i just get knocked back down again. also a referral my pcp sent out a month ago for me to see a specialist for my EDS apparently never got delivered so i had her refax it. I'm just so exhausted, anyone got any tips
Ehlers-Danlos Syndrome (EDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Irritable Bowel Syndrome (IBS)
getting diagnosed for me set off a cascade of other diagnoses so i didnt see progress for a really long time. that and having to fight to get things recognized my doctors. Took me like a full decade to get the on qnd off chest pain in a vary specific area to get seriously checked out, and even then all i got was "ah we dont really have answer, but you do have a heart murmur, probably just some musculoskeletal weirdness..." like thx very helpful. Not the first time ive gotten a diagnosis without any real treatment plan.
Just know that for most chronic conditions you're often fighting them qs well as the healthcare system, so remind yourself how far you've come when you get down. Just making appointments and specialists is progress, bc theyre a step towards seeing progress physically.
It sounds really tough, but i think you're strong for making it this far and im proud of you.
thank you ❤️
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