Living with chronic illness means every “yes” comes with a cost. I knew going out would trigger a flare, and it absolutely did — the pain, the crash, the hours afterward where my body felt like it was unraveling. But for a moment, I felt present. I felt connected. I felt like me again. And sometimes that reminder is worth the price my body makes me pay after. It’s hard, it’s unfair, and it’s exhausting… but choosing tiny bits of life, even when they hurt, can still be healing in their own way. H
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✨ New UPDATE in My GI Journey ✨ Today I met with a new GI motility specialist at Weill Cornell, and for the first time in a long time…I felt heard. He believes my gastroparesis is connected to Ehlers-Danlos Syndrome and is focusing not just on symptoms, but on actually improving my quality of life!!!! Next steps look hopeful: 1. Endoscopic intrapyloric Botox injection to help my stomach empty 2. SIBO testing 3. A referral to a pancreatic specialist to finally get answers about the chronic pancre
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I’m starting to trial eating again now that I have IV Reglan & was reacting to the TPN, which isn’t going so well. I’m vomiting almost every night. I miss when I was “stable” and could eat food. God, I miss pizza. I love pizza. #raredisease #rarediseaseawareness #rarediseases #ehlersdanlosawareness #ehlersdanlossyndrome #ehlersdanlos #hypermobileeds #hypermobileehlersdanlossyndrome #eds #medianarcuateligamentsyndrome #mals #dysautonomia #pots #nyc #foodie #newyorkpizza #posturalorthostatictachyc
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I lost my career. My unhealthy body cost me my passion, my purpose, my everything. #grief #chronicillness #nurse #registerednurse #raredisease #rarediseaseawareness #rarediseases #ehlersdanlosawareness #ehlersdanlossyndrome #ehlersdanlos #hypermobileeds #hypermobileehlersdanlossyndrome #eds #medianarcuateligamentsyndrome #mals #dysautonomia #pots #posturalorthostatictachycardiasyndrome #mcas #mastcellactivationsyndrome #gastroparesis #intestinaldysmotility #disabled #disability #chronicpancreati
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