Tuesday, January 5, 2016
The Quarterly Tiny Little Mother Mind™ Report
I rowed a boat through the shitty today to take Sophie to her quarterly Neurologist Appointment. We disembarked at the valet parking because the regular parking was full, but I had to get the wheelchair out of the boat, assemble it, put Sophie in it and then run through the rain to reach the tower where The Neurologist works. I felt distinctly out of sorts doing this, all grumbly and complaining inside my head about how much I hate this shit, this place, this life -- you know the drill. Twenty-one years. When I got to the third floor and wheeled Sophie past the Neurosurgery Department and then the CONQUEST sign in the neurology waiting room with all the MEGA DONORS MAKING A DIFFERENCE, though, I had already talked myself down. A guy was talking in an extremely loud voice across the waiting room to an older woman who also spoke in extremely high tones. They were sharing stories of misery. They were chuckling. They relaxed me, like magic. I waited in line to check Sophie in. Her wheelchair dripped water. She's a mermaid. The receptionist took our new insurance card and asked for a co-payment. Here we go, I thought. $70! she said cheerfully. I told her that Sophie had Medi-Cal secondary to her private insurance and therefore we shouldn't be subject to the co-pay. You're right! she said and peeled the sticker off the sheet where I'd signed. We waited only a few minutes before her name was called and then were ushered in for The Quarterly Taking of the Vitals. The new nurse rolled the digital blood pressure machine up to Sophie and spoke directly to her.
Give me your arm, please! she said.
I told the nurse that Sophie generally doesn't do things on demand and that she doesn't sit still with the digital blood pressure thingy on so it's impossible to get an accurate reading. I suggested that she get one of the old fashioned kind because that always worked best.
Apparently, I was invisible.
Or perhaps I had already slowly morphed into the body that houses the tiny little mother mind.™
Give me your arm, please! she repeated and then proceeded to wrap the band around Sophie's arm. I made some sort of lame attempt to repeat what I'd told her, but she had already walked away toward a computer where she stood and proceeded to ask me the questions that I wish were gold-plated into The System -- what medications is she on? how much is she on? how much does she weigh? She glanced at the blood pressure machine, frowned, walked over and fiddled a bit more with it. Is her blood pressure normally this low? she asked, and I said, No. She's very much alive, as you can see. She walked out and came back in with the old-fashioned kind.
We saw The Neurologist a few minutes later, a woman whom I greatly respect and even like. She asked me the usual questions -- how much medication is she on? how much have you weaned? how are her seizures? -- and I answered them. She raised her eyebrows when I told her how much less medication she was on, how we hadn't used Diastat in nearly two years, how the CBD and THC seem to be controlling her seizures despite this reduction in medication. I reported that Sophie was having some big seizures in the morning every few days and that I was going to adjust the dosage of her cannabis, but The Neurologist didn't ask me a single question about the cannabis. She asked me whether I would consider a consult for the ketogenic diet or the modified Atkins diet. I reminded her that Sophie tried the keto diet twice, that it didn't work the first time in the dark ages of the last century when she was an infant, and that the second time, in the dawning of the new millenium, it gave her impacted stool and turned her into a ravenous, pacing tiger and me into a traumatized, insane woman. I have no idea whether she knows that I am fond of hyperbole but there was none involved here. The Neurologist did acknowledge that she'd heard that story before, but she still didn't ask a single question about cannabis.
She did lay out on the table the possibility of the VNS. That's the acronym for the vagal nerve stimulator, and I've made it pretty clear about 4,324,569 times that we're not interested as it doesn't have compelling results. That's partly hyperbole and partly not.
IN TA RESTING.
I still really respect and like The Neurologist. I declined the VNS and didn't bother to share any more information about the cannabis. We commiserated about the maddening state of health insurance, and I warned her that Sophie's monthly supply of Onfi could cost me $3500 unless we did all the paperwork to ensure that it was medically necessary. The Neurologist wrote down the 22 drugs that Sophie had already tried, because the insurance company will inevitably insist that she be prescribed an alternative to the Onfi, and The Neurologist will have to make the case that she continue to be on this drug because we've already given the others a whirl. What we didn't discuss is that the only reason she has to be on this drug is because she is addicted to it and the only reason why we are weaning her from it at all is because cannabis medicine is helping her. But those are thoughts of the tiny little mother mind™ and don't need to be shared with the Great Minds of Neurology nor are they, apparently, of interest.
Sophie and I got back into our Sexy White boat and rowed through the shitty back home.
I'm here to tell you newbies that it gets easier when you allow yourself to feel the maelstrom of thoughts, the soaked to the skin despair and then watch them float away. Equanimity comes, eventually, even to the most feisty of us. Even to the tiniest of tiny little mother minds.™