#so i'm kinda just stuck until i can get another pulmonologist which is hard cuz there aren't a lot in my area and wait times are eons
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me when my disability disables me:
#heds#ehlers danlos syndrome#hypermobile eds#hypermobile ehlers danlos#today i'm feeling kvetchy about not being able to run (or even walk fast sometimes) because inflating my lungs takes so much effort#and the pulmonologist said i have vocal cord dysfunction which doesn't fit my symptoms and then didn't fix the insurance thing that#he said he'd fix#so i'm kinda just stuck until i can get another pulmonologist which is hard cuz there aren't a lot in my area and wait times are eons#and even then most don't know jack about hEDS bc why would they it's a rare disease but then they aren't helpful bc they don't know jack#about the rare disease that is probably the root cause of my symptoms#and being dizzy when i stand up or tilt my head back too far and not tolerating heat the way i used to also sucks thanks POTS#at least i don't faint all the time?#and i never can tell if i'm hungry or not because acid reflux makes me feel like i'm starving when i just ate and other times like i'm full#when i haven't eaten. so i can't trust my hunger cues which is really irritating. and Tums don't help my acid#i can't just keep doing prilosec courses. i need to see a GI doc maybe they could do something but there's no time#and none of this is gonna kill me and i can still function it's just so tiring always having something hurting or gross or hungry#espec. when to other people i look like i should be able to do it all just fine so they're shocked when a flight of stairs winds me#i'm young and should-be healthy and this is unfair and i hate it and i wish my body worked right but i have it better than plenty of ppl#so really i can't complain
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