On to the next cycle…

TL;DR - I got my Botox injections, so treatment has resumed. And I use some energy on a Fancy Feast drawing in order to have something to share here and justify writing this update:

So we know now I lost 3 months of my life - and probably much longer in recovery time setback - due to a perfect storm of American healthcare awfulness. Now is the time to hope I can start setting things right, even if much is still stacked against me and my EASY TO MAINTAIN DISABILITY THAT COULD’VE BEEN STABILIZED AT ANY TIME IN THE PAST DECADE.

I have some insurance, even if it’s still American and cruel at its core, so I was able to get the vital Botox injections that were due on Christmas. It was only on Friday, so I don’t know my new normal yet. All I know is it can’t be as bad as it was! Tho, yeah, that may still mean the rate of decline has been slowed from what it was, not stopped.

Stopping the decline is the next step. For now I’m still trapped with the nightmare corrupt doctor scenario, but for the first time in a long time there’s a flicker of home.

My neurologist, who does the Botox injections, is also the should-be life saver who finally officially diagnosed me with my condition, and in the process verified that everyone I had told my doctors for years was - who would’ve guessed? - totally correct. He knows my case is rare, and the specifically paperwork hell ways my treatment has gone wrong. He also has to physically deal with my muscles to inject me, and you can’t call me a liar when you can FEEL what improper care did to me. (He has also experienced clear improvements when I *was* getting halfway-decent care. Weird for that correlates!)

I told my neurologist all the gory details of the Bad Doc, while terrified I had gone too far and was gonna trigger the Professional Courtesy circling of the wagons. Instead, he told me the DC-based hospital system he worked for was expanding treatment by adding headache and pain management specialists. That alone means nothing. Offices are all overbooked, so no cold calling ever gets returned. But my neurologist offered to vouch for me, similar to how his former colleague noticed traits when she first saw me, and knew to send me to him, so I could finally get properly diagnosed. By the end of the day, I already had an intake appointment scheduled with a headache specialist. I don’t know the pain management process, but if I get accepted, and my neurologist steps in to say, “everything Chrispy tells you, no matter how crazy it sounds, is true and proven,” it could be the point that finally stops the decline.

That is so, so, soooo many ifs. Please don’t get hopes up yet. It would take an immense amount of understanding and a leap of faith from any new doc to accept an endorsement from my neurologist (who would also have to really put himself out there to recommend such a thing) so it’s far more likely a month/months wait to first see a new doc (headache specialist visit is March 29th), then months of the same “let’s try this standard move and rule that out first” deal I’ve had to do with every new doc who sees me - even when multiple other docs in the SAME OFFICE had run that experiment when they had seen me! Even with hope and promise, there will be a scary stretch waiting for the paperwork, appointment calendar, and ass-covering process to weather before I get a shot.

Or maybe it’ll be a repeat of when I got my neurologist, when I went from a frustration systemic error causing a problem to finally having a diagnosis and getting my needed treatment within a week.