The United States Medical System, Part Two in a Series Through Photos

23 years, beginning in infancy, four different benzos (Nitrazepam, Ativan, Klonopin and Clobazam),
zero seizure control,
high dependency, still being prescribed to babies and young children
despite little to no evidence of efficacy
THE REAL TIGER MOTHERS take charge

The Price of Addiction
(deductible finally met in November because of MRI, etc., catalogued in The United States Medical System, Part One in a Series Through Photos
co-pay for drug over eight years has ranged from $0 to $780 according to the whims
of the United States Capitalist Medical System
where patients are consumers and the HHS Secretary is Big Pharma

Never Go Backwards
(went backwards at behest of Neurology BigWigs one year ago, a seriously fucked up decision)
backwards means once you start to wean, don't jack up the dose
backwards means after weaning 80% over three years, you jack up the dose to a larger amount than four years previously
#nogood
#neveragain
#tigermothersknowbest
#trustyourgut

The Gig Economy

In Ring Three of The Greatest Show on Earth:

So, in keeping with the general zeitgeist, Sophie will be driving Uber from here on out. That's because she needs to start pulling her own weight and stop taking hand-outs. She's a drug addict as well and needs to take responsibility for her actions. As her parent and primary caregiver, I do, too.

We just received notice that our private insurance company, Blue Shield of California, is jacking up our plan 40%. According to my very experienced and reasonable broker, it's due, in large part, to the sabotaging of The Republican President (that's what I'm calling him now as he was voted in by those people and is tolerated by those people and is supported by those people) over the last nine months. Yes, it's a whole lot more complex than that, and premiums for private insurance policies continue to vex the greatest minds, but that's what They should be working on. But, hey, what do I know? I certainly don't want the gov'mint coming between me and my doctor.

I've come to the conclusion that Sophie is over-medicated, that her brain has been damaged by long-term usage of benzodiazepines and so we must continue to wean her from it.

In the meantime, I will be shelling out even more of a co-payment for the benzo due to new health insurance rules that only allow a 24 day supply instead of a 30 day supply (something about the liquid form and not being able to open a bottle or give part of a bottle) and so that means more money for the drugstore and the drug manufacturer and the insurance company, more money because the drug, ineffective in controlling seizures, is powerfully addictive and could literally kill Sophie if stopped. We are, basically, slaves to it and to the whole shebang, the Greatest Show on Earth.

Hence, the Uber gig. Who's driving with us? We're thinking we can fill it with clowns and drive it over a cliff.

Tiny Little Mother MInd™ Report, Part 486,783

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:

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.

The Broken Record of THC, Baby

I think ya'll are in need of a Sophalofa update,  no? Let's all knock on wood three times, on the ceiling like you mean it. We've gotten through another minuscule wean of the benzo, and Sophie is sitting up, eating and drinking and walking and humming and not-sleeping and not-seizing like a champ. The THC is helping her.

The benzo, legally prescribed and given to her over much of her twenty-two years on the planet, damaging her brain and causing Benzo Withdrawal Syndrome does not work. It harms her.

The THC and CBD are helping her.

Let me type that again: The THC is helping her. 

Did you hear that Jim Sessions, Tom Price and all the rest of you goons on the cabinet and in the legislature of the Disunited States of Amerikkka, Inc.? Canada is moving right along with federal policy. You can read about that here. If the country didn't discriminate against those with disabilities immigrating there, I'd be putting on my tiny mother mind™ thinking hat right over that pink pussy one that I'd need anyway given Canada's chilly climate.

Anyhoo.

THC, baby. CBD. Whole plant cannabis medicine.

Sigh.

Did you read this?

A pharma company that spent $500,000 trying to keep pot illegal just got DEA approval for synthetic marijuana

Don't peel yourself off the floor or anything. You've heard it all right here for years. I've walked by Insys' tables at epilepsy conventions and "brain" summits, walked by their smiling reps and picked up and perused their glossy brochures. I have probably benefitted from their underwriting of epilepsy projects. In the words of Ron Woodroof in Dallas Buyers Club (watch the whole thing, please, because his final line is what I'm saying):



















This has been a Public Service Announcement.

If you want to learn more about cannabis medicine, I highly recommend you purchase Dr. Bonni Goldstein's book Cannabis Revealed. I helped her to tell the stories of many people who are seeing amazing results for various diseases and conditions, and you can read about them as well as learn about the history of the plant, how it works, what the latest research tells us, how to dose and other invaluable information. Because of my contributions, I do make a small amount for every copy sold, so this is also my disclosure, but even if I didn't, I'd tout the book as it's the best one out there about a subject that we still, evidently, can't convince the Powers That Be to get their heads out of their fannies, look past the cold, hard cash and start helping people like Sophie with it. Send a copy to Sessions et al, if you're so inclined, to help their view. It's dark and stinks up there.

Cannabis Revealed

Dragon Prayer

I'm really slacking off here on the old a moon, worn as if it had been a shell.  I don't even know where to start. Do I even need to start or start back? Sophie turned 22 years old on the 8th, and there was a bit of celebrating,

but Sophie isn't doing so well.

I had a mini nervous breakdown this week, too, which involved some early morning throwing of the Virgin Mary Oracle and other desperate drama, and that was partly because the Republif*^ks are dismantling our healthcare and partly because I went into the wormhole of Trying to Figure Things Out and have decided that Sophie is suffering from benzodiazepine withdrawal syndrome.  Strangely -- or not --  figuring something out (meaning your intuition is confirmed/affirmed backed by research and science) means an incredible release from fear into calm. The two reasons for my mini nervous breakdown are intricately entwined and can be summed up in three words: Medical Industrial Complex. Normally, I'd explicate, but the rant would be epic and, to tell you the truth, I don't feel like wasting my anger on the screen, and I'm better now, calmer. I'm also too busy fighting with CVS drugstore and Anthem Blue Shield to switch the benzo from tablet to liquid so that I can begin the process of weaning again (I can take away tinier amounts if it's liquid). I think the struggle is similar to Ben Carson going from neurosurgery to housing and development, all while comparing slavery to immigration -- oh, Bless his Neurosurgeon heart. 

You're going to need a pre-auth because this is a narcotic, the earnest pharmacist told me for, perhaps, the five millionth time since Sophie has been on this drug for nine years (the drug should apparently not be taken for more than a few weeks but, hey, let's give it to babies with epilepsy!) I'm also administering a new protocol of THC to help mitigate the horrendous effects of the syndrome and gathering information from the wonderful Dr. Bonni and from my friends in the know because The People in Charge don't know jacksh*^t about marijuana. Speaking of those in the know, the Ass Hole Care Act (AHCA) as proposed by the Chief AH Eddie Munster will be devastating to those with disabilities in particular and not much better for everyone else. It'll be awesome for insurance companies, though, and medical device manufacturers and, I guess, for those yokels out there who think the government has been coming between them and their doctor with the Affordable Care Act (yokels, insurance companies call the shots, not the government but hey, big business, free markets, the glories of unfettered capitalism!)

Oops. I said I wasn't going to rant.

Maybe I should quote a little Jesus.

Blessed are the meek for they shall inherit the earth. (Matthew 5:5)

Then shall he answer them, saying, Verily I say unto you, Inasmuch as ye did it not to one of the least of these, ye did it not to me. (Matthew 25:45)


Bikkhu Boddhi says,  "if we are to close the gap between ideal and actuality—between the envisaged aim of striving and the lived experience of our everyday lives—it is necessary for us to pay greater heed to the task of repetition. "

I think of myself at present as a dragon coming out of a cave. There's vision and hope in the fire coming out of my mouth, and there's also my tail, its scales the glitter of the past, replicated over and over. The blast of fire. Drag. Swish.