A lot of you have been asking me about Sophie, how she is, what's going on and whether the cannabis medicine is still helping her. I'm sorry to be so circumspect -- sometimes I feel like an old peasant woman who might jinx things if I dare to utter anything positive. The thing is -- Sophie is doing really great as far as seizures are concerned. I seem to have found a sweet spot with CBD and Onfi, and she's going weeks without any discernible seizures. She's also eating and drinking and sleeping really well. Her mobility is still not as good, though, as it used to be, and it's becoming difficult to take her walking. She's stiff and contracted a lot of the time and resistant to movement. The New Neurologist is working with me to try to figure out what's going on. I asked The New Neurologist whether I should just be satisfied with The Way Things Are. I asked him whether this might be The New Normal. I don't know if it's the years of mindfulness meditation or just what my friend Jody called years ago, creative denial, but I'm pretty good at accepting things eventually, at least with my tiny little mother mind.™ I've figured out most days that the harder I resist whatever is in the present, the darker the day and the quicker the descent into what The Bird Photographer has quite aptly named the dark side. The New Neurologist said quite emphatically, "No. She's only 22, and I don't think we need to accept this incapacity." He's ordered some tests, I continue to give her CBD daily, and I've made the executive decision with my tiny little mother mind™ to do another tiny little wean of the Onfi. The New Neurologist doesn't mind the benzo, so I've decided that I'm on my own, and you know what? I have no more f**ks to give regarding that miserable drug. I'm not sure when, and I'm not jinxing anything at this point.
We shall see.
So that's where we are, and speaking of cannabis:
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| photographer: Carl Jackson |
Do any of you want to know more about cannabis medicine? You've heard me talk about Dr. Bonni Goldstein, right? If you haven't ordered and read her book Cannabis Medicine Revealed,* you should do so now. Dr. Goldstein is a nationally renowned expert on cannabis medicine, and a group of my friends and acquaintances had the great good fortune a couple of weeks ago to attend a presentation that she gave at my house. Dr. Goldstein has a year-long waiting list for patients, but she was not at my house to give personal advice about cannabis. She doesn't sell any cannabis products nor distribute them, but she is a wealth of information and helps thousands of patients with various illnesses to find relief from their symptoms. She spoke of the history and politics of cannabis and answered questions about its efficacy in treating various diseases. Since most of you can't or couldn't come to my house and ask her questions, you can educate yourself and others. I think you'll find the book enormously accessible with well-researched information and compelling stories of some of her patients.
Here's the link to buy the book:
Cannabis Revealed: How the World's Most Misunderstood Plant is Treating Everything from Chronic Pain to Epilepsy
*Disclosure: I helped Dr. Goldstein with the book and am paid a small percentage of books sold.
How totally fabulous. Sweet Sophie. I'm wondering about weed helping with nausea and pregnancy...so I'm getting her book. It's a minor problem compared to chronic illness and such but I wonder what to tell the ladies who ask.
ReplyDeleteLove as usual,
Beth
Great news about Sophie and a budding support group perhaps?!?! Isn't it reassuring to be among like minds? Love you guys
ReplyDeleteI'm so glad to hear that Sophie is doing well!
ReplyDeleteIna May Gaskin said years and years ago that a little weed can help with the nausea of pregnancy. I'm sure that's been edited out of her books by now but I remember that.
ReplyDeleteI am SO glad to hear that Sophie is doing well on the regime that you've finely tuned for her with your huge Mother Mind. And I am also glad to hear that the new neurologist works with you instead of against you. And Bonny is a treasure. Bless her. She is a pioneer. And so are you. And one day, I hope that will be recognized. I bought her book.
I'll have to get the book, thank you. I would be concerned about Sophie's muscle stiffness. Long term benzo use can do this but I'm sure you know this. I have a friend who is addicted to benzos and what she's gone through these past five years is horrendous. I imagine one day people will look back at psychiatric medicine and neurology and shake their heads. I was just reading about long term side effects of my antidepressant and it explains my short term memory loss apparently. A rock and a hard place. But I fear I have fucked up my brain for good with the drugs.
ReplyDeleteNow I'm rambling. I'm glad that Sophie is having so few seizures. And I am so thankful that there are people like you who have the energy to fight for legalization and recognition of cannabis. Katie is doing well, so far anyway.
Take care of yourself too sweetie.
glad to hear sophie is doing well, except for the muscular stiffness. i will order the book today.
ReplyDeleteI like that the New Doc suggested and feels that "I don't think we need to accept this incapacity", it is Docs like that which line up with my own belief that there are no limitations to the progress that can be made, against all odds, by even the most disabling of conditions or diseases! I am so glad to hear that Sophie is responding so well and I agree with The Bird Photographer description of The Dark Side and the going over to it is something I constantly resist in daily Caregiving and the obstacles that make it sometimes hard to remain Mindful and Positive. Big virtual hug.
ReplyDeleteGreat news about Sophie! :-)
ReplyDelete