My husband is also a massively infrequent flyer in the healthcare system. My kid, unfortunately, is a lot more like me. I didn’t know at the time I carried an autosomal dominant genetic condition. It took me 25 years of suffering and achieving end stage disease conditions before I finally met someone who knew what it was. …
My husband is also a massively infrequent flyer in the healthcare system. My kid, unfortunately, is a lot more like me. I didn’t know at the time I carried an autosomal dominant genetic condition. It took me 25 years of suffering and achieving end stage disease conditions before I finally met someone who knew what it was. Breaks my heart. At least my son won’t have to spend decades in pain and misery before someone takes him seriously.
Most of my specialists, including my straight up fabulous and really hard working dysautonomia neurologist are cash only. Government care won’t touch us. Private insurance can’t find a box to fit us in. That said my private insurance has paid $275k on me in 262 claims this year so far. They aren’t aware of dozens of others or the $30k out of pocket I’ve paid.
The Honduran dysautonomia neurologist is married to a delightful woman with my same condition. When he told me about Canada, he looked like he would cry - again. He’d obviously cried about it before. I understand why the Canadian contingent give up. I have a strong family, unbreakable faith and a stubborn streak a mile wide. Still, despair and I are companions in the dark night. It’s a tough ride. But it’s also full of wonder and grace.
I work to pay for treatment. I praise God he gave me the resources to run a boutique consulting company with clients that love me as is. I will move mountains for them, even when it has to be done one teaspoon at a time.
PS I just painted DMSO gel on my husband’s plantar fasciitis. 🙂
Thank you, Tim.
My husband is also a massively infrequent flyer in the healthcare system. My kid, unfortunately, is a lot more like me. I didn’t know at the time I carried an autosomal dominant genetic condition. It took me 25 years of suffering and achieving end stage disease conditions before I finally met someone who knew what it was. Breaks my heart. At least my son won’t have to spend decades in pain and misery before someone takes him seriously.
Most of my specialists, including my straight up fabulous and really hard working dysautonomia neurologist are cash only. Government care won’t touch us. Private insurance can’t find a box to fit us in. That said my private insurance has paid $275k on me in 262 claims this year so far. They aren’t aware of dozens of others or the $30k out of pocket I’ve paid.
The Honduran dysautonomia neurologist is married to a delightful woman with my same condition. When he told me about Canada, he looked like he would cry - again. He’d obviously cried about it before. I understand why the Canadian contingent give up. I have a strong family, unbreakable faith and a stubborn streak a mile wide. Still, despair and I are companions in the dark night. It’s a tough ride. But it’s also full of wonder and grace.
I work to pay for treatment. I praise God he gave me the resources to run a boutique consulting company with clients that love me as is. I will move mountains for them, even when it has to be done one teaspoon at a time.
PS I just painted DMSO gel on my husband’s plantar fasciitis. 🙂