You Cannot Fold a Flood

So, um, the hives came back.

My instincts are evidently still pretty sound. That big 'ole bolus of Vimpat was the wrong approach. The Sweet Doctor Whose Name Rhymes with Kevorkian confirmed them. He got on the phone with Doogie and our regular neuro and pulled the Vimpat. When I pulled back Sophie's hospital gown and saw the giant hives covering her, I felt terror (not at the hives but at the feeling they don't know what they're doing), a rush of anger (not at the doctors but at The SITUATION) and then just that same preternatural calm that I imagine has everything to do with Hospital Time and the weird stasis that comes along with sitting next to your child in a hospital bed for hours and hours. Then Sophie's father came in to spend the night with her and I drove the streets of the shitty back to my bed and fell into a deep sleep and dreams of boats and waves and whales. Honestly, I did.

So, what's the plan? The plan is to increase Onfi, the benzo, and work with the CBD. Someone asked me yesterday why I would continue to use the CBD when "it wasn't working." I'm not sure why Sophie fell out of the pretty decent seizure control she had for nearly three years. Maybe it was a virus, maybe it was the switch from brand to generic hormones, maybe it was a tilt in the earth's axis. As you can see (and what I've been writing and railing about for the past twenty years), the best doctors in the land don't know a lot either. Cannabis medicine is not a cure for seizures, but it's the only thing that has made a dramatic difference in her life. I really do think that we need to tinker with it and with the Onfi to get back to some kind of sanity. There are studies "out there" showing that the combination of Onfi and CBD helps to decrease seizures for some people. We're not fond of Onfi because it's basically a terrible drug that causes profound addiction and tolerance, but I think playing with it is in order.

I'll keep you posted. Thank you for buoying us the last few days. It means the world.







Here's a poem by the great Emily Dickinson that one of my friends sent me. Thank you, Anne.

You cannot put a Fire out—
A Thing that can ignite
Can go, itself, without a Fan—
Upon the slowest Night—

You cannot fold a Flood—
And put it in a Drawer—
Because the Winds would find it out—
And tell your Cedar Floor—

Emily Dickinson