Monday, January 8, 2018

Tiny Little Mother MInd™ Report

Sophie walked down the street today -- nearly the whole block -- and back to our house, leaning only lightly on my arm. She hasn't walked that far in months, and I'm going to say that it's because she has been taking CBDA for over a month (since her last hospitalization), and I've reduced her Onfi again. She's now down about 50% from the amount she was taking last year at this time, and we're going to keep on going.

The backdrop to this is, of course, the recent roll-back of Obama-era marijuana rules, a "return to the rule of law" according to Attorney General of the Disunited States of America Jeff Sessions who is, in my tiny little mother mind,™ one of the biggest PsOS now running the country. He is correct that the federal rule of law maintains that marijuana is classified as a Schedule 1 substance and is of no medicinal benefit with that designation. Reader, I'm not going to write about this all over again. You can put medical marijuana or cannabis into the search engine over there on my righthand side-bar and pull up dozens of posts that I've written over the last five years or so.

What I am going to tell you about tonight is the SIT-U-AH-SI-ON we here in California face now that our state has passed a bill legalizing recreational marijuana.

Check this out:

Here's the thing. Sophie's medicine will be taxed at 34.5%. We will save 9.5% in taxes on her medicine if we make a trip to the Medical Marijuana Program in Baldwin Park, CA to get her a Medical Marijuana Identification Card (as opposed to just the regular doctor's recommendation), but we'll still be paying a 20% tax on her medicine each time we make a purchase. To put that into perspective, consider that the pharmaceuticals that have poisoned her for more than two decades are tax-free purchases. With legalization in California, cannabis is now subject to so many regulations involving licensing and shipping that we're sort of scrambling with shortages and access to products.

What does this mean? I imagine you're wondering, isn't making marijuana legal a good thing? Isn't that what we've been fighting for and working our asses off to get? Won't it be a wonderful thing to fill up the California coffers with cash?


Honestly, I don't think the California legislators or the general population that voted to make recreational marijuana legal give a flying foo-foo about cannabis as medicine. I imagine that most don't even believe the claims of medical cannabis patients or even experts. I had sort of a PTSD response to that tax chart the other day, when Dr. Bonni showed it to me. It reminded me of this drug Sophie was on back in the clueless days of the 20th century when I was desperate enough to try anything that The Neurologists suggested. The drug was called Topamax, approved for migraines in adult patients in late 1996,  but we gave it a whirl. Sophie quickly became, literally, anorexic as well as that neurologist-generated euphemism called irritable (meaning psychotic screaming all hours of the day). I'm only telling you this story because I can't tell you how many times I heard about people with migraines using it successfully and staying on it for extended periods of time because they loved the weight loss factor! Maybe only the seizure folks out there reading this will get what I'm saying, understand why I kind of broke out into a sweat when I looked at that tax chart. The tiny little mother mind™ is disturbed as well that after giving one mighty fine speech last night at an awards show, Oprah Winfrey is being extolled as a presidential contender.

Holy moley. This is where we are now?

Many do care, I guess, about cannabis medicine being affordable and accessible to everyone, but many don't. I imagine those legislators, with a few exceptions, just buckled to the Powers That Be, with dollar signs lighting their asses, and that's not a cynical thought. It's borne of experience. The whole shebang is a clusterfuck of gargantuan proportion.

Honestly, my tiny little mother mind™ is stumped.


  1. Same as it ever was sad to say. Makers me livid and seething. They don't care but hope it is of some help to you that I get it Maggi watching it fall apart at the seams both sides of the pond x

  2. You must feel sometimes as if you are going to loose that - tiny little mother mind - of yours. Except that you can't. I stand in awe of your ability to even keep it all in order.
    I thought the same thing when I heard the Oprah hoopla. Really? That's the go to?

  3. It's all about the money and I swear, I don't see an end in sight. We just keep talking about the economy, and letting lobbyists make laws, and making things easier for people with money and harder for those without. Until we have a seismic shift in our priorities, I wish I could say I thought it'd be different.

    That said, I'm thrilled Sophie is doing well these days, and I am so freaking happy you're out there speaking your mind. Love you!

  4. Where we are now is fucked. But where Sophie is is better. Oprah should not be president.

  5. So irritable = psychotic screaming? [and this was before or after Topamax?]

    Quantum power!

  6. Oh Jesus. First of all, if Oprah has a grain of sense she'll know that being president is the last thing she needs to do.
    Secondly- I am so glad that Sophie is better.
    And as for the rest- well, it's a cluster fuck of epic proportions and I have absolutely no answers.

  7. Sophie looks wonderful. I can't even wrap my mind around the rest of it. Holy hell.

  8. The whole JS thing is fooked up. And you know that better than most. BUT, Sophie looks grand in this photo and I am over the moon about her being able to walk so far! That is astounding.

  9. You and Sophie inspire far-reaching hope despite the current events that keep unfolding and keep trying to take hope from us. There has always been light around Sophie in the photographs I've seen of her. Her inner light is growing brighter. We are witnesses to that. I can imagine her joy in being able to walk with you and your joy in walking with her.

  10. Did Sophie smile after walking? In most of the pictures she is so serious, I read the post about drooling and clamminess and how marijuana has alleviated those symptoms. Does she ever throw back her head and laugh? I have been following this blog for a year or so, and I am missing the last time she was closest to her self.

    1. Thanks for your thoughtful comment, Judy, and for reading my blog! Sophie doesn't smile often, but she does smile. She rarely laughs. I imagine a lifetime of seizures and drugs have literally changed the architecture of her brain, dulling her affect. As far as being "closest to her self," -- well -- first of all, I love that phrase. Closest to her self. I struggle with these questions of identity all the time -- they're pretty much the basis for much of my work, not to mention my life. It's a constant dance of acceptance, resignation and living questions as opposed to answers. Sophie's "literal" baseline of "self" is fairly inconsistent. During periods of intense seizure activity, she is "out of it" and largely unresponsive. She is also quite "fierce." If you or I had the number of seizures she has had over decades, I think we'd be dead. Honestly. Her life spirit is quite intact, I believe, albeit dimmed now and then. I look on her treatment with cannabis medicine, as well as early osteopathic treatments and Chinese herbs and acupuncture as being the source of this resilience -- or perhaps helping to nurture the spark of resilience and "chi." I hope these thoughts help to answer your questions -- thanks for giving me food for thought, too!

    2. Yes, Sophie's resilient Life Spirit is truly evident! And I too Loved the phrase 'closest to her self', it was Beautiful written and your response was so candidly transparent as a Mother. The constant dance of acceptance, resignation and living questions persists with most Families that have a Loved One with extreme disability or illness, it's one of the hardest parts I've personally dealt with in the doing of that dance daily.

  11. I've learned so much from you on this subject, and appreciate all you've done to raise awareness.

  12. I'm so glad to hear that the drug course you've chosen - adding CBDA and further reducing her Onfi - has borne fruit. That long walk with Sophie must have felt so uplifting. I hope you see continued improvement.

  13. Well, Sophie's wonderful Progress had me rejoicing for you all at least momentarily before the bombshell dropped about the other topic of the Post... I'm so very Sorry... there are no adequate Words, but raising Awareness might help? You do that admirably... I've got another Meeting at School for the Young Prince tomorrow, the Alternative to the Alternative, so had my own grim Post about that aspect of The System as it now stands for those with significant Disabilities for which there is no known Cure... or very much Social Tolerance or Sympathies. Whatever... we Soldier on and lead the Resistance and try to raise Awareness. Virtual Hugs.

  14. I'm just trying to think about your wonderful walk because all the "is of no medicinal benefit" talk is really pissing me off, and has for years. Love and hugs to you and Sophie.



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