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Bronwen Leigh's avatar

Hi Anne - as a widow from the fast traumatic instant death of my partner 18 years ago - I can’t even imagine the trauma you face daily with knowing the end is coming - slowly. I’m not comparing - both situations have their own challenges and grief - but I expect when you face one, the other seems alien. And as an aside - my mother (still with us) has encountered many Dr Dickheads over the years. I get that these people are specialists and have studied hard and are perhaps brilliant diagnosticians - but they rarely have a decent way of talking to their patients. She has encountered so much arrogance. But also kindness and support too. Here in the UK we may have the NHS but it’s barely held together with surgical tape. Hopefully our new government will improve things 🤞🏻 Wishing you better doctors 💚

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Joan Stommen's avatar

Omg… what a jerk! You’ve mentioned him before; thanks for sharing/clarifying this first encounter! And thank you so much for “hearing the hooves… if no horses, look for zebras!” This phrase… in different forms is the tag line for EDS… it took years for my granddaughter to be diagnosed correctly. Ehlers Danlos Syndrome is degenerative and affects connective tissue throughout the body. She was mid-teens when they said seizures. The pain, fatigue, mobility issues didn’t mesh with that… long hospital stays for testing, physical therapy to help her walking ….yada yada… funally a young physicians assistant said you may have EDS. Everything fit. She was 20 by now and angry with everyone. Amazing how many Dr’s hadn’t heard of this. Googling showed the phrase… and she walked into every appt saying I’m a zebra! Turned her life and attitude around and owned it! Advocated for med schools to teach it! She’s 26 with a degree in CJ and an intelligence analyst who uses a cane for support. Sorry to hijack here, Anne… I’m just so angry reading this hospital scene. We all have little 🦓pins and stuffies. I tell my doctors if they’re heading down the “it’s part of aging” speech…zebra hooves perhaps? gets their attention! 😉😅 Bless your heart for being a loving advocate. Much love and peace, dear friend…you do a wonderful job caring for your husband…sharing with us…so well written. I know it’s healing for you; wish I could be right there to give hugs! 🥰❤️

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