Witnessing

I took Sophie to her quarterly visit with Nice Neurologist yesterday afternoon. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting The Doctor PTSD Self. Saint Mirtha came with me yesterday, and aside from the tremendous help she provides lifting the 4,000 pound wheelchair into and out of the back of my car and ministering to Sophie in the back-seat, her presence just calms me. I felt less chaotic, less alone, less like the person careening into space on my old copy of Sartre's La Nausée. I'm perfectly capable of doing these things by myself and have done so, but it's gotten very, very old in this the two thousandth and eighteenth year of our lord. During the visit with Nice Neurologist, I did my usual and asked him to reverse places so that I was sitting at his desk on the swivel chair and he sat next to Sophie on a folding chair. So I can better explain to you what's going on with Sophie, I said, and use the time to tell you about CBDA, about how I've been weaning the benzo and what dose you'll need to write a prescription for her at this point. Just kidding with the switching chairs. I used to call these visits with All the Neurologists The $475 Reflex Check, but these days I've noticed that All the Neurologists barely touch their patients, much less check their reflexes. Nice Neurologist is so open, though, and he generally has some interesting information about something or other related to immunology or studies being done on mice or genetics -- information that he doles out in a hopeful tone as it might distantly relate to Sophie in between the schooling that I'm doing. He writes down everything I say about CBD and now CBDA, and when I encouraged him to watch Sanjay Gupta's latest show on opioids and cannabis medicine, we had a healthy discussion about the fuckery of the Sackler family and Big Pharma pushing them on the country back in the day. I think I inserted somewhere in this discussion that I'd die happy if The Neurology Community recanted their stance on benzos, particularly with epilepsy patients, and I remember him looking a bit sheepish (was it the eyebrows or the mouth?) and not acknowledging it. He was, in fact, there to write that scrip for the benzo that Sophie's been on for eleven years and not much else. Sigh. Nice Neurologist is awesome, actually, in the long line of Neurologists Sophie and I have encountered during the last twenty-three years. I'm grateful for his attention even as I'm painfully aware that I'm sort of running the show. I made an appointment to bring Sophie back in mid-July and then wheeled her out to the waiting room to join Saint Mirtha who, when we left the office and went down into the parking garage, helped me put Sophie into the car and lift the 4,000 pound wheelchair into the back, even as the four Grown Ass Male Valets stood watching us, gawking. On another day I might have made some caustic remark to one of the men or even shoved them in my mind into one of the luxury cars out-sexing my Sexy Mazda and locked all the doors. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting the Doctor PTSD Self. You'll have a witness to all of it.

Dispatch from the School of Revolution: CBD Edification

This won't be a post about Oliver and our efforts homeschooling. Things are going very, very well on that end, and I've nothing earth-shattering to report other than Oliver likes school!

I did read the following information, though, about a presentation given by Dr. Bonnie Goldstein who is following Sophie as we journey down the medical marijuana path. I do not know the person who wrote this out, but from what I can tell in an initial read, it does a great job summarizing some of the science behind cannabis. Dr. Goldstein is wonderful -- the kind of doctor who you can call or text at any time of day or night with questions -- the kind that you DON'T abuse with said questions and answers because you trust that she will get back to you immediately (ahem -- O Neurologists I Have Known).

Here's the link to read the summary of her talk/presentation that she makes around the country.

Email me if you have any other questions.

As we speak, Sophie has been having stellar weeks with little to no seizure activity, a revolution indeed.


Oh, and you might want to watch Sonjay Gupta's Weed, Part 2 which is airing on CNN tomorrow night (March 11th).

Marijuana Update, Number 7,567,890 in a series: The Woman Who Knew Too Much

Even though it's Monday, my favorite day of the week, I'm dragging. Even though I've already consulted with the guy who's going to paint our garage apartment, I'm dragging. Even though, I've made some requisite phone calls and taken care of some bills, I'm dragging. Even though I've done a bit of work for My Job, I'm dragging. Even though it's still summer, and I have three children about to begin three different schools, and I'm figuring out who needs what and who needs it when, I'm dragging. I just can't shake the dragging.

Have you ever seen the Hitchcock movie The Man Who Knew Too Much? It's one of my favorites -- probably because it's perfectly weird and creepy, particularly given the peaches and cream casting of Jimmy Stewart and Doris Day. I was always a good girl when I was younger, and even now struggle to be the good girl. If not always do what's right, then at the very least think right. Whenever I go to karaoke parties (ok, I've been to three of them), I always choose to sing that song because it's so perfectly ridiculous. I'm drawn to the perfect pairing of the creepy and the zen.

Listen to the above clip while you read the rest of this post.

Did you see the CNN special of Dr. Sonjay Gupta's last night? It was called Weed and featured the little girl Charlotte whose severe epilepsy has dramatically improved since she started using medical marijuana. I sat sort of frozen throughout the special and only teared up once or twice. My tears were, strangely, not the sorrowful kind but the angry kind. The update for Sophie is that I've been unsuccessful locating the high ratio CBD stuff in California. I'm hooked into a group of people, though, who are on a waiting list to get it when it's available. Let's hope that's soon. Last night's special stated that studies in Israel, done decades ago, showed a strong correlation between high ratio CBD and reduction in epilepsy. The forty some odd children who are taking Charlotte's Web now have ALL shown dramatic reduction in their refractory seizures.

 Frankly, the whole thing gave me agita at the least and existential dread at most.

Don't get me started on why we are only learning about this in 2013. When I imagine what Sophie's life might have been like if she'd had the opportunity to try it back in the 1990s, I feel sick to my stomach.

Que sera sera.