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Been a bit but seemed like a good time to check-in. The neurologist has discontinued all my meds for pain a few weeks ago. Too many side effects or they were ineffective. I've had 8 different medications trialed and all discontinued mostly as ineffective, 2 had very bad side effects, one had me end-up wearing a cardiac monitor for a month after it made me severely tachycardic. I know he is doing his best and he has expressed to us that this is very hard to treat to begin with and I'm an edge case in that my response to brain meds is atypical and I react at very low doses. There are still some things that could be tried like ketamine or high dose opiates but those have there own baggage and would destroy my independence, such as it is. So for the moment I savor the days like yesterday when my pain was very low. But we solider on because next week may bring a new breakthrough and treatment. 


I cover my legs in flannel pants or scrubs in public, a sweater sleeve on the right arm but for the face I'm kinda stuck because covering one side would be kinda creepy in a super-villian sort of way.👀

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