Wednesday, June 5, 2019

Sunbathing Today

photo by Lauren, Sophie's aide

That was the text that Lauren sent me today, along with the above photo of Sophie. She's doing okay, dear Readers, since our last conversation here on the old blog.

After the shitshow I described previously, Sophie had another horrendous reaction to the Depakote -- well, maybe not horrendous, but she was rendered barely conscious by the combination of the new drug, the benzo she's been on for 12 years and the CBD and CBDa. I had a conversation with the Nice Neurologist who spent a decent amount of time with me at some odd hour (he's stellar about accessibility) describing what he called pharmacology. I interrupted him at some point and asked him whether he was making decisions via a dart board, and he burst out laughing. I have a dart board, he replied, but it's got the President's face on it.

Reader, I love the Nice Neurologist.

What we decided on was to lower the Onfi by quite a bit and keep the Depakote and cannabis medicine the same. The science behind that (coupled with some intuition and guesswork, I'm certain) is that the cannabis and the Depakote push up the levels of the Onfi, rendering Sophie way too sleepy and weak. So "lowering" the Onfi is really not "lowering," technically, even though the number on the syringe says so. Sigh.

That's what we've done this week, and it seems to be working in that Sophie is awake, alert, able to go to her day program and have fewer seizures. I'm convinced that we need to get Sophie fully off the Onfi and let the cannabis really do its work. Perhaps the addition of Depakote will enable this to happen.

And speaking of cannabis, I read this week that former house speaker John Boehner (who is on the board of Acreage Holdings, a marijuana investment company) has been making an online infomercial pitch for the cannabis industry. "This is one of the most exciting opportunities you'll ever be part of," Mr. Boehner says in an endlessly streaming video for the National Institute for Cannabis Investors. "Frankly we can help you make a potential fortune."

Mr. Boehner stands to reap about $20 million dollars from his partnership with Acreage Holdings.

How nice for you, Mr. Boehner.

Some of you might remember that I wrote an open letter to the man last year when this story first broke. Since it's heated up again, I hope you'll re-read and share it with anyone in your circles who might get it to the former Speaker himself.

Here's the link.


  1. Loved your letter to JB. So spot on in every way.

    Nice to see Sophie outdoors soaking up some sun, and very glad to hear that she's doing better. The roller coaster of it all (the pharmacology)over the years is really NOT thrilling. But you know that. You are a tireless advocate for your darling daughter, and know far more about health and medicine than most professionals do.

    Here's to some better days ahead!

  2. That letter rocks. Relieved Sophie is doing better. Hearts hearts hearts to you and one to the Nice Neurologist and his awesome dart board.

  3. I'm happy Sophie is doing better. At least his dartboard has a photo of tRump on it:)

  4. Yep. You have good reason to adore your Nice Neurologist.
    Reasons. More than one.
    May this new regimen prove to be a good one for Sophie.
    I also hope that Boehner gets the opportunity to read your letter. I doubt it will even make him blink with its hard truths but that's on him, not you.

  5. I'm so glad to hear Sophie is doing better. I tend to trust a man with a quick sense of humor and the current president's face on a dart board. As for Boehner and his millions from cannabis, is he going to do something about all the young people in jail for possession of a single joint? Make that black and brown people, and it's happening still. Makes me mad and sad.

  6. SO glad Sophie is doing better. Sending love to both of you.

  7. Boehner is a boner. There, I said what everyone was thinking. Wait, no...I take it back. That makes boners look bad.

  8. Follow the Money Trail... when the filthy Rich get a cut of MJ profits then of coarse they'll do a 180 on their stance. Glad Sophie's Aide is accompanying her to do Fun things like Sunbathing, some Girl Time Out is important. When she's doing better she can experience so much more.

  9. Dear Lord, I've been away for a while. You are dealing with so much more shit than is warranted. So glad Sophie is doing better. Your nice neurologist made me laugh. Your post made me marvel at your strength, your passion and your eloquence.
    We are about to become a legal recreational state, our medical program is comical, and the money mania is ratcheting up. It's crazy. Wishing you good things. xo

  10. The Nice Neurologist sounds terrific! I'm glad Sophie has improved and yeah, it would be great if this actually acts as the prompt to wean her off the Onfi entirely. I don't know anything about pharmacology but it seems like such a crapshoot, how all these drugs interact.



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