just needing some encouragement, i think.
i am really frustrated. i have a really big bump in the middle of my stomach— upper abdomen area. it’s been steadily growing. my GI doctor ordered a CT enterography with IV contrast, and it didn’t show anything related to my stomach at all (this was after we’d also done some other non-invasive tests). i have a lot of other medical problems to deal with right now, but this bump really hurts and has been there for over a year now (actually, it’s been there so long that i’ve given it a name, just to spice things up a bit 😂). i’ve been worried we’re missing something for years now. i mean, it took from 9 years old to 12 years old just to get a diagnosis of CRPS, and at 18 years old (only a year ago) i finally received a few other diagnoses that explain things a bit better. but i’m still in so much pain, and my stomach is still a mess. i try to be so positive but i think my frustration sort of hit me just now, because unlike most of the time, i actually have a visible issue (aka the bump) attached to the pain i’m experiencing with it (like, this bump makes it nearly impossible to eat/have anything in my stomach without feeling like i’m imploding sometimes), but tests aren’t showing anything. i’m doing everything my doctors have told me to, even though it is extremely hard, but i just am not getting better. i don’t even care about diagnoses at this point. i just want to feel better, or even just be able to function even at a low level for a whole day! i’m not sure what i need, maybe i just needed to rant to a community of people that might understand. but if anyone has anything that might help, even just some life advice, honestly, that would really help. 💜
#RareDisease #Gastroparesis #EhlersDanlosSyndrome #ChronicIllness #ComplexRegionalPainSyndrome #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #WritingThroughIt