Instagram: May 27, 2019 at 11:41AM


via Instagram https://www.instagram.com/p/Bx-Kv3gpxha/ I want to be podcasting, and I am so sorry that I still don’t have the new episode out, but instead: not only am I continuing to have trouble talking because of my jaw, now I can’t sit up. Today is an especially rough day. I’m having #craniocervicalinstability, which is a spooky symptom that 1in 15 people with Ehlers-Danlos get, which basically means my head feels too heavy for my neck. This is thr third time it has happened to me over a couple of years, but the second time this calendar time, so I am definitely taking note and am going to talk to my doctor about imaging tests. My fingers are marking the cyst/growth/creepy thing o my jaw. I am going to see the ear/nose/throat specialist tomorrow. Best scenario: it’s synovial fluid leakage from my jaw joint, which will require minor surgery to remove and to stop the leakage from reoccurring. Worst case scenario: it’s a tumor of some sort. And, there’s the land of in-between. Today I need to shore up my strength (and not lift my head). What I want to do is podcast—I am so behind where I want to be for @theremightbecupcakes. I am about two episodes behind where I wish to be, but this thing has impeded my talking at times, plus made every regular symptom worse, for almost two months. I know my listeners understand I am chronically ill. But it’s so frustrating. So I rest. And rest. And rest. #homebound #chronicillness #chronicpain #carla #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #invisibleillness #invisibleillnesswarrior #theremightbecupcakes #podcast #beyourownheroine #ladypodsquad #spooniepodcast #spooniepodcaster #zebrapodcast #zebrapodcaster

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