Cannabis is Medicine

 

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Happy 420 Day and Tales from the Vet

I've been talking about marijuana/cannabis for well over five years now, right here on the old a moon, worn as if it had been a shell. If you go over to the Looking for Something? search bar on the right-hand side of the blog and put in the words medical marijuana, cannabis, you'll pull up posts from 2008, even, when I first started reading about marijuana and pondered smoking it myself and blowing it in Sophie's face. There are posts documenting my walks up and down Melrose Avenue, looking for a pot doc to give me a medical marijuana card, posts documenting my resignation at being on a waiting list for Charlotte's Web, posts about my jubilation coming off the waiting list (one of the first 20 or so in California back in 2013), posts about our great gratitude for its success in giving Sophie the first real seizure relief in her life and, of course, numerous posts where I wrote -- or rather ranted -- against and about The Powers That Be in all the shapes they took, whether it was a doctor, a head of a non-profit foundation, a pharmaceutical company, a legislator -- even a relative or two -- who basically threw obstacles in our (and many other families') path.

Take a moment, if you have one, and put those words in the search bar just for me.

If you don't have a moment or are tired of me, please at least read the two links below, one a blog post from four years ago and the other an article that appeared in an investor paper this week.

Fight the Power.

GW Pharma Spikes on Likelihood FDA Will OK Cannabis-Based Med

I'm only saying this because it seems like not a single moment goes by in the day that I don't run across something cannabis/marijuana related, and it's all about the tide turning, the evolution of seemingly intractable folks in power, the swaying of public opinion and on and on and it just makes me feel all -- I don't know -- sad? Angry? Bitter?

Yesterday, I watched a bit of a live Facebook thing with old Bernie Sanders and young Cory Booker, touting some bill that is being introduced to Congress, and while I deeply admire Senator Booker for his progressive views, his eloquence and general decency,  I'm cognizant of his formidable obeisance to Big Pharma and it just makes me -- well -- sad. Angry. Bitter. I don't have anything to say about Senator Sanders, other than he appears to be still working doggedly for the people which is a good thing, but I'm tired of the dogged white man thing, and I'm not sorry about that, especially given the racial component of the whole marijuana legalization thing but that's a whole other story.

In the end, it's all about the money, isn't it?

What do I know? Not shit, apparently.

Scratch that whole post up there.

Read this article, now.

Let me tell you about what happened at the vet the other day when I brought our 14 year old poodle Valentine in for a general check-up. Valentine is still remarkably perky despite her many years, but she clearly suffers from arthritis and has lately also been needing to go outside about a million times a night and seems -- overall -- confused, as well as deaf as what do they say -- a post.

I am decidedly and unashamedly not a dog-lover, although I do have a great fondness for Valentine, and so after putting off the whole take her to a vet and spend about a gazillion dollars, I did bring her in. The vet said that she should probably go on an anti-inflammatory for her joints and that this might cause some side effects like diarrhea and vomiting and would cost about a million dollars, in addition to the $450 blood work and urinalysis that she'd already done and I felt like I might cry there in the smelly room with cat hair floating around and the kind vet assistant smiling benignly -- cry there not for the poor dog but for my old caregiver self who really just can't handle any more side effects of drugs so I said, brightly, What about CBD oil? It's a potent anti-inflammatory! And she said, Well, you know, it's a Schedule One narcotic, so I can't say anything about it, and we need more studies done, so I ran out of the room, pushing the benign assistant aside, dragging Valentine behind me on her purple leash out into the sparkling yellow Los Angeles light and just ahead of a dark cloud that opened up raining diarrhea and vomit all over the vet office.

Report from the Caregiver Chronicles

Sophie, March 1996
New York City

I took Sophie to the pediatrician this morning and spent two blessed hours with her. I say blessed because the pediatrician took care of us. She asked many questions, examined Sophie thoroughly and listened to me tell her what's been going down for the last couple of months. She assured me that we would work slowly and methodically together to rule out infection and virus being the source of some of this distress. We know for sure that there's no infection because all blood work, including cultures, came back negative, except for a slightly elevated white blood cell count. She agreed that the way The Neurologist treated me wasn't right and attributed the behavior as fear-based. She drew a parallel with how some of her patients are treated in the larger community when they choose to delay or forego vaccinations -- as being immoral or stupid or anti-Science. The Pediatrician understands these patients and their fears, is intellectually curious and has pledged to do no harm. She knows that I've been doing this thing for decades and know my daughter best. She made the point that pediatricians can be excellent diagnosticians because they are used to working from non-verbal cues. I watched her examining Sophie and realized that Sophie hasn't been truly "examined" with someone's literal hands, other than the osteopath's,  for -- well -- I can't remember. She is going to run a few viral tests and will get back to me later in the week. She suspects that Sophie might have had some kind of virus or might still have some kind of virus. She agreed that the medication interaction (CBD and Onfi) is worth further exploring and trusts that Dr. Bonni will continue to help me with this.

She supported my decision to take Sophie to a new neurologist -- someone whom I've known for nearly twenty years and who is now in private practice. I'm taking Sophie to see him next week and hope that he'll support us, too. In the meantime, this incredible weight on my shoulders has been lifted by her care, and I have hope that we'll get to the bottom of Sophie's decline. At the very least, I don't feel so terribly alone.

The Tiny Little Mother Mind™ Reports

First of all, I'm going to ask you to view the following video, if you can.


https://www.facebook.com/DavidGeffenSchoolofMedicineUCLA/videos/1277904508994589/ 

If you can't see it, let me tell you what it's about.

Dr. Shaun Hussain, a pediatric epilepsy specialist at UCLA School of Medicine is a leading expert in the hard to control epilepsy syndromes category. That would include children who suffer from refractory seizures -- the seizures that medication does not help. Sophie was diagnosed with infantile spasms, one of the catastrophic epilepsies, when she was less than three months old. Dr. Hussain was probably in high school when I began injecting Sophie's thighs and arms with high-dosage intravenous steroids and then her first benzodiazepine which was, in the dark days of the waning twentieth century (1995), not approved for use in the United States. The drug was called nitrazepam, and it was given to me in a process called "compassionate protocol," a phrase that I can only throw my head back and laugh a long and bitter laugh over, today. 

Today. April 27th, 2017.

Today, when children are diagnosed with infantile spasms, they are still treated with much the same protocol, even though that protocol is not effective. Yes, new drugs have been developed and approved, imaging is more powerful and surgical intervention is more prevalent and sophisticated, but treatment is still not entirely effective, and a diagnosis of infantile spasms remains one of the most devastating pediatric epilepsies. Not a week goes by that I don't read about, receive an email from, a telephone call or a referral from someone whose child had infantile spasms, has infantile spasms or another epilepsy syndrome and who is struggling with constant seizures despite multiple drugs, often in combinations of three and four -- drugs with hideous side effects.

As most of you readers here know, over the next nineteen years after her diagnosis, Sophie was given twenty more drugs in various combinations, many of which were not approved for use in the United States, were only newly approved and little studied or not approved for use in children. I can honestly say that at a certain point, these drugs were prescribed in a way that I can only compare to a primitive crap shoot -- that the series of neurologists who prescribed them would often compare the situation to throwing darts, and that one or two of them openly admitted that they just didn't know how the drugs worked, why they didn't work and what to do, really, about Sophie. Sophie is not alone in this experience. Children like her are legion. When she was nineteen years old, I learned about The Realm of Caring* and the Stanley Brothers and put Sophie's name on a waiting list to try their high CBD oil. We began to give her cannabis oil called Charlotte's Web in late 2013, and her seizures stopped for the first time in her life for a period of weeks. In the nearly four years since, we have weaned her completely from one drug and are slowly weaning her from the benzodiazepine clobazam (Onfi) that she's been on for nine years, a drug so vicious that we might never be able to get her off of it, such is her dependency and the damage it's wrought on her brain. While she is not seizure-free, and there have been periods of great struggle, we achieve long periods of seizure freedom through careful tinkering with dosages and strains, the addition of THC and careful monitoring. Her quality of life -- and our family's -- is vastly better.

But this isn't about me.

The video. 

Dr. Shaun Hussain is leading the cannabidiol studies at UCLA and thus has ties to two pharmaceutical companies, namely GW Pharmaceuticals and Insys. Feel free to read up about both companies and what they're doing. The title of this Washington Post report should give you a taste: A Pharma Company that spent $500,000 trying to keep pot illegal just got DEA approval for synthetic marijuana.

In the video, Dr. Hussain makes some startling and very disingenuous remarks about cannabis medicine, including the horrendous last case history. It is literally rife with inaccuracies and bombast -- stuff that I won't deign to go over.  I participated in a panel "discussion" (quotes are because there was no discussion as the Powers That Be literally shut down we uppity folks with the tiny little mother minds™) with Dr. Hussain several years ago at a Brain Summit put on by the Epilepsy Foundation of Greater Los Angeles. The panel "discussion" was about cannabis medicine, and I spoke from a parent perspective. I wrote about it here as it was the proverbial straw that broke this camel's back as far as my trust and respect for the neurology world in general and the party line about cannabis in particular. It was insulting, demeaning and patronizing, and it continued even afterward in a series of emails with Dr. Hussain. 

 Toward the end of his presentation on the video, he advises the doctors in the audience that it would behoove them to report those parents who are using cannabis medicine with their children to Children's Protective Services. 

That might be the second straw that drives the broken-backed camel into the sand.

Here's my comment to the post and video on Facebook:

This video will probably be taken down, but before it is, take a look and a listen. These are the people -- DOCTORS -- with whom we must work as we navigate the medical cannabis world. Here's my comment, in case, it's taken down as well:

After parenting a daughter with a severe and uncontrolled seizure disorder for over two decades, I can't say I'm surprised, but I am appalled at the outright disingenuousness of Dr. Hussain's presentation here. The pretension, the condescension and outright ignorance don't enrage me as much as they confirm what I've learned as well about the neurology profession in general but specifically this subject. The laughter in the audience confirms, to me, that those in attendance, including the presenter, are nothing more than shills for the pharmaceutical industry. To speak of and warn doctors of their duties as "mandated reporters" is unethical and profoundly disturbing. I know for a fact that these same doctors are actively nodding their heads as parents navigate the cannabis world. You HAVE violated your Hippocratic Oath, quite effectively and systematically, over and over. I imagine this video wasn't intended for public viewing and that it will be removed, but there are many of us out here who will have seen it, transcribed it or will have heard of it. It doesn't surprise us, but it will further disintegrate the relationship between doctor and patient and foster increased mistrust toward those who are supposed to be serving us. Yours is a profession that will prescribe a powerful benzodiazepine to an infant, or any number of powerful drugs not studied in children yet remain obdurate about a treatment and a medicine for which there is reams of data and information. Shame on you.




*Realm of Caring is a non-profit foundation. The Stanley Brothers make Charlotte's Web. There are several other manufacturers of cannabis oil  using different strains of marijuana. Dr. Hussain, while joking about the good-looking brothers, neglects to differentiate between the two.

You Cannot Fold a Flood

So, um, the hives came back.

My instincts are evidently still pretty sound. That big 'ole bolus of Vimpat was the wrong approach. The Sweet Doctor Whose Name Rhymes with Kevorkian confirmed them. He got on the phone with Doogie and our regular neuro and pulled the Vimpat. When I pulled back Sophie's hospital gown and saw the giant hives covering her, I felt terror (not at the hives but at the feeling they don't know what they're doing), a rush of anger (not at the doctors but at The SITUATION) and then just that same preternatural calm that I imagine has everything to do with Hospital Time and the weird stasis that comes along with sitting next to your child in a hospital bed for hours and hours. Then Sophie's father came in to spend the night with her and I drove the streets of the shitty back to my bed and fell into a deep sleep and dreams of boats and waves and whales. Honestly, I did.

So, what's the plan? The plan is to increase Onfi, the benzo, and work with the CBD. Someone asked me yesterday why I would continue to use the CBD when "it wasn't working." I'm not sure why Sophie fell out of the pretty decent seizure control she had for nearly three years. Maybe it was a virus, maybe it was the switch from brand to generic hormones, maybe it was a tilt in the earth's axis. As you can see (and what I've been writing and railing about for the past twenty years), the best doctors in the land don't know a lot either. Cannabis medicine is not a cure for seizures, but it's the only thing that has made a dramatic difference in her life. I really do think that we need to tinker with it and with the Onfi to get back to some kind of sanity. There are studies "out there" showing that the combination of Onfi and CBD helps to decrease seizures for some people. We're not fond of Onfi because it's basically a terrible drug that causes profound addiction and tolerance, but I think playing with it is in order.

I'll keep you posted. Thank you for buoying us the last few days. It means the world.







Here's a poem by the great Emily Dickinson that one of my friends sent me. Thank you, Anne.

You cannot put a Fire out—
A Thing that can ignite
Can go, itself, without a Fan—
Upon the slowest Night—

You cannot fold a Flood—
And put it in a Drawer—
Because the Winds would find it out—
And tell your Cedar Floor—

Emily Dickinson

Smells Like Bullshit, Episode 45,678,982

Unless you've been living under a rock (and I've said it before, I understand), you've seen the various articles coming out at least once a day regarding radical price increases of popular pharmaceuticals. Most recently, there's the Epi-Pen story with its handsomely paid CEO, daughter of a Democratic congressman, and today's selection was about pharmaceuticals that treat inflammatory conditions, including arthritis. You can read about that right here and then come back to hear what the tiny little mother™ mind thinks about it all.





(this blank bit of screen has subliminal messaging because I'm a bit of a conspiracy theorist and tremendously biased)













Are you back? I was going to make this a Facebook post but then got carried away enough to realize that my blog was a perfect place to rant a bit, especially because I so rarely do that anymore. That was a joke. I'm thinking aloud here, typing so fast my fingers are a blur (I scored very very high on finger dexterity when I took a comprehensive test back in the last millennium a skill that comes in handy for a number of things that I won't elaborate upon here), but it will help me to get it out of my system so that I can go back to my day with a modicum of sanity. You know, finish the housework, navigate the systems of care for Sophie, coax Henry along the college application process and remain level-headed while shopping at Target for shorts with Oliver.

Anyhoo.


This is mainly what I want to say about the continued clusterf**k that is Big Fantastic Pharma and Big Grandiose Private Health Insuranceland or The Big Big Medical Industrial Government Complex (I sound a little like Drumpf now, don't I?) as far as it relates to Medical Marijuana World. When this rant's finished, I'm going to fix it ALL. It's going to be GREAT.

Along with the EpiPen and arthritis drugs, epilepsy drugs have long fluctuated wildly in price -- a single dose of ACTH, the steroid routinely given to those with infantile spasms cost $154 when we gave it to Sophie back in the late 1990s. I believe it's upward of $16, 000 now, and that's not because of inflation. That's because of the mumbo-jumbo Big Pharma puts out -- you know -- the high cost of research, rising costs, blah, blah, blah, etc. Diastat, or rectal valium, an emergency medication that is now in generic form, has cost me as much as $1200 A DOSE and as little as $7.50. Long-time readers of a moon worn as if it had been a shell might remember my Drug Mule series when I chronicled what happened to the price of clobazam and how I gamed the system. I'll refresh you:

1. Called Frisium, clobazam was not FDA-approved when we first started using it. I paid out of pocket for it for many years, purchasing from a London pharmacy through a NYC pharmacy. Cost: $150 for a month supply. So, manageable.

2. Approved by the FDA and renamed Onfi, it was not covered under my Insurance Company's formulary and was priced at $1800 for a one month supply, 1/2 of which I was subject to, so that's $900.

3.  I was no longer able to get Frisium but located a pharmacy in Canada that sold clobazam (remember Onfi, Frisium and clobazam are all the same drug and close cousins to Klonopin, one of the most heavily prescribed drugs in the US of Opiate Addicts) for $60. It became illegal to ship the drug across the Border, so two friends of mine in the Movie Industry, on location, picked it up and ferried it back to me. This was legal -- well, sort of -- but not sustainable, and in lieu of flying up to Vancouver every three months (I contemplated doing this and making a little vacay out of it), I turned next to:

4. A non-profit organization on the east coast that helps people with certain conditions get drugs for free or at a reduced price. I should add here that the Magnanimous Manufacturer of Onfi offered to give me a coupon for 12 months that would have taken $50 off the $900 co-pay (similar to the Epi-Pen CEO's magnanimity in lieu of reducing her $5 trillion salary). The non-profit PAID FOR THE ENTIRE CO-PAY which was like manna from heaven. I just had to swallow the small amount of vomit in the back of my throat when I found out that the non-profit was largely underwritten by the Magnanimous Manufacturer of Onfi and GOT A HUGE TAX WRITE-OFF for their charity to folks like us.

Are you following this because those four points were really just illustrative and an aside. Here's what I want to say today, in reference to that New York Times article linked above:


Guess what else is a potent anti-inflammatory?

I'll give you a hint: The DEA recently confirmed its status as a Schedule 1 drug, along with heroin and cocaine, meaning it has no medicinal value and can't be studied except under the most draconian of regulations.

Are you following me?

I'm no conspiracy theorist, but I suspect Big Pharma is getting their ducks (or dicks) in a row as they scramble to research and develop their own cannabis concoctions. The fact that we can grow it ourselves and make our own medicine means no money for The Big Guns, so we must all be subject to the scare tactics of Big Government and Big Private Entities. Free enterprise, baby. Capitalism, baby. Let the Market Do Its Thing, baby.

Us? THC, baby.







P.S.
While we're smelling the bullshit, if you have arthritis and live in a state where you can get some, try cannabis. It's a potent anti-inflammatory. I am not a doctor, though, and have only a tiny little mother mind™so please consult yours and don't sue me.

THC, Baby

Sophie in West End apartment, New York City
1997

The tiny little mother mind™in concert with several other tiny little mother minds™ thought that a small amount of THC, given during a particularly prolonged cluster of myoclonic jerks that might and probably would have culminated in a large and violent generalized tonic-clonic, might do some good.




Mark this space.















I'm going to admit that my hesitation in typing out anything positive is borne of a centuries old superstition that probably exists in most cultures and certainly exists in the southern Italian ones of which I am a descendent. By uttering something positive, I will jinx it and something bad will happen next. I think it might be called Murphy's Law for the WASPs among you. In modern times this might be called being a control freak or maybe even narcissistic and certainly egotistical and self-absorbed -- as if my every action and thought could influence the outcome, good or bad, or that it's all about me. That I don't believe I can jinx the good by typing out the bad is evident in the number of "bad" posts I have on this here blog, but remember my tiny, little mother mind™ and cut me some slack.

I know nothing and I'd bank on you knowing nothing, too, at least as far as why the hell Sophie's brain is so damn dysfunctional. I feel like I have to mark the positive, though, if I'm going to truly live in the present and be optimistic and cheerful (as per my I Ching reading).

Anyway, I gave her a little blip of THC during the cluster, and do you know that the seizures stopped? It wasn't immediate, and an argument could easily be made that they would have stopped eventually. That wasn't even the mind-blowing part, to tell you the truth. What happened was that the veil over her eyes was lifted and she looked clearly at me and smiled. She kept smiling, too, for the next few hours, off and on. She also had no clamminess and stopped drooling. Clamminess and drooling are two things that strangely literally break me. It's like they're superficial manifestations of the whole damn clusterf**k, and I feel broken, literally broken, when Sophie is clammy or drools excessively. I just know that she's deeply miserable and uncomfortable. After the couple of drops of THC, though, she looked brighter and definitely happier. Her palms were dry, and she stopped drooling. She seemed really, really comfortable.

Was she stoned? Perhaps a little bit, but that's okay.

THC, baby.

I write a lot on here about the effects of Sophie's seizures on me and our family, and I might not often convey how anguished I feel about the effects of them on her. I'm thinking of it, though, all the time. While there's a certain amount of dissociation for me which I imagine is a survival technique, the border between Sophie and me is very thin, a scrim, really. I believe that comes from the two of us being a kind of extreme parent and daughter. Sophie is completely and utterly dependent on me in the same way that she was as an infant. She's also powerfully herself, imbued with an evident grace and intelligence that people have remarked upon her entire life. This doesn't mean that our identities are blurred as much as it means they are fluid. That relationship is one that I know other mothers and sons/daughters like us struggle with -- it's the cause of much anguish, of marriages and family relationships broken, but it's also something precious and wondrous and rare.

I gave Sophie a bit more THC again later in the weekend, and the same thing happened. I might be on to something, and despite my superstitious nature, I'm going to keep you posted. Don't forget that we are on the frontline of this medical cannabis revolution and that the Powers That Be are taking their sweet time, mired in politics, money and party lines (we need more research). It's harrowing, but we on the frontline have to not only tinker with dosages and tweak products and strains but do it without the approval and sometimes with the indifference of those Powers That Be. Just the other day at The Neurologist's office, after suggesting for the 5 millionth time that I consider the VNS, The Neurologist said, I know you really only like to do the natural thing, though. It was tiny, but it was a sting, and given how difficult and complex this whole medical cannabis journey has been, I couldn't help but feel the great extent of my tiny little mother mind.™ The Powers That Be are going to do things in the way that they've always done them, though, so in the absence of real partnership, we're going to do it on our own. It's highly individualized. Ironically, though, the scrim between Sophie and me is probably the single most powerful help I get when I'm faced with crisis, and it works both ways. I know when she's comfortable, and I know when she's not.

THC, baby.

The Third Shift

Ain't no shame holding onto grief as long as you let other good shit in, too.

Bubbles, The Wire

Season Five

I crashed last night at 10:30 after giving Sophie her cannabis oil and slept soundly until 1:30 when the baby monitor next to my head squawked. I got up to go check on the girl, found her sitting in the middle of the floor, wet and soiled, a stale smell permeating the small room. I changed her quickly and silently and lay her back down before going into the kitchen to get a glass of water, and then on my way down the hall Oliver emerged from his room and asked whether he could talk. Now? I might have said and maybe my hair stood on end and I might have looked less than maternal. Sophie was already out of bed again. I could hear her wandering around her room, looking for places that aren't padded to bang her head. Just a minute, I said to Oliver and went back into her room, led her to bed, lay her down and covered her up again. Go back to sleep, I said. Back in my room Oliver stood in the doorway, needing to talk about the tilt of the universe and what it means to be fifteen and have divorced parents. There were tears. It's normal to feel weird, I might have said somewhere between the Copernican theory and Descartes. I was both patient and in full Despair Camouflage. I filched the character Bubbles' remark that struck me like a gong last weekend when I finished The Wire binge. Holding onto grief even while letting good shit in. The talking went on for probably half an hour during which Sophie rose and was put back in bed several times, and I was emptied even as my boy was filled up. I told Oliver that perspectives are often most hard to find at 2:00 in the morning. That's why they're called the darkest hours before dawn, I said, while I gave him a hug. He said he was ready to go to sleep and went back to his room.  He apparently fell immediately to sleep while I lay on my back in full darkness my mind at peak performance. Sophie was up again, and when I went into her room she looked at me in the darkness with owl eyes. She had no seizures. There've been too many owls this week. I spent the next three hours finishing up paperwork on my desk and getting ready for my book salon tomorrow night. I read Toni Morrison's eulogy to James Baldwin and played three games of solitaire on my computer. Sophie was up the entire night. She had no seizures. At 5:00 I turned off the monitor next to my bed and feel asleep before waking again at 6:30 to give Sophie her cannabis oil again. I found her curled up on the floor, not asleep. She sat up and when I went to change her, I noticed a dark band at the top of her middle finger. It was hair, a hair, many hairs wrapped so tightly and thickly around her tiny finger that I had to work to get it off. The nail bed was blue but grew pink as I rubbed it. Had that kept her up all night? Hair, wrapped tightly around her finger, its source something too much to contemplate? There were cannabis oil stains on the pillowcase, and later, when I tied a kerchief around her neck to catch the drool, my mind wandered to its appropriateness. The kerchief is black with bright green marijuana leaves printed all over it. I thought it was probably a poor parenting move as she attends one of the district's largest high schools that has a two page dress code with admonishments against hair rollers and shower caps, white trim tee-shirts and bandannas. Then I thought if the thing carried the logo of Lundbeck, the manufacturer of Onfi, it'd be ok. So in a final act of civil disobedience, I lit up a giant spliff*, waved it over her and then dabbed a bit of CBD oil on all her pulse points for good measure.  The boys slept in. This is the good shit. I clocked in, stoned, for first shift.








*New readers should know that I haven't smoked pot in thirty years, that is a lame attempt at not so much irony but more like magical realism.

Dazed and Enraged

A friend forwarded an article from the Wall Street Journal today about the Israeli chemist, Dr. Mechoulam, who is considered the pioneer researcher in the field of cannabis medicine. I scanned the article because I know all about him and his work, but just before I was going to click off of it, I read this:

And we found that those 7 or 8 patients that were getting the [cannabidiol], 4 out of them had no epileptic attacks for three or four months and three others had much less and only one was not affected at all. By contrast those that did not get cannabidiol continued their attacks. We published that and I thought something would happen. But nothing happened for 30 years, and I was kind of disappointed… [There is now an ongoing] major clinical study with cannabidiol in epilepsy. It’s a shame really that one had to wait for 30 years when these facts were in the literature.

The operative words here are, obviously:

It's a shame really that one had to wait for 30 years when these facts were in the literature.


I'm not going to mince my words. If I had a dollar for every time I've either read or heard from the lips of countless doctors and researchers and politicians and all manner of human beings that constitute The Powers That Be the words WE NEED MORE RESEARCH  -- well, I'd be a millionaire.

We need more research is smoke and mirrors with money behind it.

When Sophie's seizures improved dramatically after giving her cannabis, there was a tiny part of me that wanted to kill myself for the regret. I'm a person who practices mindfulness, who believes for the most part that things happen in the right time, and I was able to allow that tiny thought to sit there but not overcome my larger joy. Since that time I've spoken at numerous events and told my story here, to consortiums of epilepsy professionals, to neurologists and Epilepsy Foundation board members. I've shared the stories of others in the epilepsy/cannabis world through my work and on this blog. I've been applauded and thanked, but my tiny little mother mind™ has also been openly mocked and dismissed.

We need more research is smoke and mirrors with money behind it.

I am upset and angry that I might have had this treatment for Sophie when her brain was more salvageable, when her life, my own life and that of her father and brothers had not been so irrevocably changed by the experiencing and witnessing of tens of thousands of seizures every single day for nineteen years.

Yeah, I know there are some of you out there who visit this blog and bemoan my anger, and I should probably not document any of it in real time, but sometimes it's the first step toward peace.

Regret, Anger, Peace.

Peace.

Basketball Agita and a Punch to the Gut

So ya'll know that I am the world's least able athlete, have an antipathy toward football that rivals one toward Drumpf and am otherwise bored out of my mind by sports with two exceptions: when my sons play anything, I'm into it and I am a Tar Heel basketball lover of the nth degree.

So, yeah. Last night. I have a friend who can't watch the Heels play anymore because he's afraid he'll have a heart attack. I felt some serious agita last night, lying on my bed with Henry sprawled next to me and the laptop open to the final NCAA championship game. Oliver is on the east coast with my parents, but when Marcus Paige shot that 3-pointer to tie the game, I called him and before I could scream in exultation, The Big O screamed back at me that VILLANOVA WON, MOM! VILLANOVA WON! And Henry and I looked back down on the little screen which evidently was a second or two behind the regular broadcast and watched Villanova make that final shot and wow. Just wow. Or should I say holy shit. And then I just expired, as did Henry.

Anywho.

On another note, I was up most of the night with Sophie. We're going through another weird period, and I'm just barely keeping it together. So many of you help me to keep it together, and I am continually reminded of the grace that lives in this world. I'm frustrated and pained at what's going on -- not just in my literal world but in the world at large. Being able to channel that frustration and anguish into writing keeps me quite literally alive, and my post over at marijuana.com today was like a reverse sucker punch.  Please visit it, give it some love and share it if you feel like it. Here's the link:

The Literal Beating Heart

Going Back to Sleep with Stevie Wonder

You're up at five because you might still be on east coast time. You meditate and feel a wash of gratitude for the day you spent with friends from the east coast, for Sophie's dry palms (you'd felt them earlier), for something new in your life, for the beautiful morning. You do some work for The Job That Might Be No More. You make an egg and toast for Henry and refrain from telling him that last night you looked through his school papers and read on his leadership application that you were his mentor and most admired person because you take care of my sister and never give up and  she is always there even immediately after she's mad at me. You also refrain from telling him that your eyes dripped tears on the copy machine. After he leaves, you begin the process of getting Sophie ready for school. You're out of coffee (significant for what follows). Sophie has actually been up for hours, making your east coast time wake-up slightly less painful because you'd be up with her anyway, but you refrain from giving her CBD because you believe that she has reached saturation and that might be the reason for her inexplicable turn for the worse over the weekend. You have been stifling distress about this, but this morning her palms are dry and warm as opposed to clammy and cold, so you feel relief and wonder whether you'd better start yet another strain of the CBD or keep to this one at a lower dose. The only trouble is that the new one costs about five times more than the old one, and now that you have The Job That Might Be No More, you're definitely not going to be able to afford the new one. You'll think about that later and all the implications of Cannabis Capitalism as you've had no coffee and you forgot to buy some more for the third day in a row. You make Sophie's lunch and pack it in her backpack, then toast some bread and spread peanut butter on it for her, slice some strawberries and prepare her meds. You bring her into the kitchen and feed her. She seems much better, but by the fourth bite or so, she goes into a slow-motion dance, her arms bent at a weird angle, her fingers fluttering and her head turns to the left instead of right which is strange. You call her name and try to get her attention but she is elsewhere. You dissociate. In a couple of minutes she begins chewing whatever was in her mouth, and you finish feeding her. You bring her into her bedroom to change her for school, and she lays back on her bed and falls asleep. You turn on her iPad and curl up beside her listening to Stevie Wonder. Don't you worry bout a thing. You fall asleep because you've had no coffee and in your dream you are young and someone you loved is in the dream, but it's ok to wake up. It feels delicious today to have gone back to sleep, to then wake up.

They say your style of life's a drag
And that you must go other places
Just don't you feel too bad
When you get fooled by smiling faces.

Purple Day, In Case You Missed It, and My Ongoing Problem with Authority

via marijuana.com

I know you know I've got this great writing gig over at marijuana.com. What you might not know is that Saturday (two days ago) was Purple Day. I'm not so into these days when we mark whatever hell is closest to our doors, but I do feel you can never be too aware of the effects of epilepsy, so I wrote a little personal piece for the website.

I'm no good at raising money anymore and am too mouthy to be much of a lobbyist. I have a problem with authority, to tell you the truth. In fact, even this past Saturday night, I had a deep and involved conversation with a developmental pediatrician who was compassionate, enlightened and a bit of a mansplainer, all rolled into one. I have to tell you, though, that despite my sharing Sophie's success with cannabis, he didn't ask me a single question about it. In lieu of doing anything constructive about this or perhaps admitting that the fault lies with me (I must sound dumb or offensive or crazy or something), I've decided that this is a rule and not an exception. His eyes didn't exactly glaze over, but he made more effort to disagree with me about my assertion that it's unethical to prescribe five drugs for a child with a seizure disorder that's already failed nine. When I told him that I've probably met or know of thousands of children with refractory epilepsy and have yet to meet one whose seizures stopped with the fourteenth or fifteenth drug, he disagreed and claimed to know some. To be fair, he admitted that it was often "the honeymoon effect," and his eyes flickered when I told him that Sophie had never been on a honeymoon so I was pretty certain that the cannabis wasn't working because of this phenomenon but was actually working, like, for real! I won't even mention the glaze his eyes took over when I casually dropped the little bomb that Sophie's seizures began after her initial vaccinations and worsened when she was vaccinated again while being treated with steroids.

Sigh.

The kind doctor is doing beautiful work with the disadvantaged and foster children -- and I'm cognizant of the fact that perhaps the fault lies with me and my ability to be persuasive and diplomatic and sensitive. Oh, and to be careful with that edgy, angry thing I do. I admit that when he declared his alliances with Various and Important Associations and Pediatric Monoliths, my own eyes glazed over.

The rift is enormous, you see, and I've no interest in vindication.

In any case, I can tell a story, can't I? My ability to do so is probably the only remnant of my sanity left after these twenty-one years.

Here's the link. Show it some love and share it if you think others might benefit.

Purple Day

House of Cards: A Whole Plant Manifesto

How do you follow up a post about the death of four children whom you actually know? Shouldn't there be a period of silence, of mourning?











Today, The New York Times published an article titled Marijuana-Based Drug Found to Reduce Epileptic Seizures. You see, the big guns at GW Pharmaceutical had been conducting studies, and these studies are confirming what we already know. Yeah, I think there need to be studies. I've got one going in my house and have been diligently studying for three years and seventeen years before that. One of the residual effects of dealing with all of this shit for so long is that I don't have even a fingernail's worth of trust in the system. And at risk of sounding like one of those crazy conspiracy people, I suspect all the big pharmaceutical companies are working their asses off to keep marijuana from being de-scheduled so that they can control the whole pie. Sorry about all the banalities, the pies and the fingernails, the houses of cards, but using trite language can be as effective and judicious as a good curse word.

I have learned that it's essential we talk about whole plant medicine. So, if you send me that article, I'm going to say, thanks, I saw it but I don't give a damn what GW Pharmaceuticals is doing. What I'm going to think is fu*k GW Pharmaceuticals and the horse it rode in on. Then I'm going to laugh my ass off over the big 'ole CDC announcing today that they are no longer recommending opiates for pain control.

Doctors Told to Avoid Prescribing Opiates for Chronic Pain

Meanwhile, I've had to halt the weaning process of the opiate that Sophie's been on for over eight years so I can give her a break from the agony.




What I do give a damn about is this story that I wrote for marijuana.com -- not my story, of course, but the story of brave and dogged people like Lindsay Rose Sledge.

A Passionate Mother's Reluctant Path to Lobbying.

The Quarterly Tiny Little Mother Mind™ Report

Someone said this: Science is more than equations or experiments. It is a window to humanity, a quest for understanding, and, often, a way of life. 

I poked raspberries in Sophie's mouth. She's a bird these days, less -like than ready to fly. She opens her mouth and reaches toward the plate, around me, ready for the next and the next. Her father took her to the dentist last week, but they had to leave without the cleaning because she was too rowdy. The strain of cannabis that we're trying and the dosage that we've tinkered with so diligently under the direction of Dr. Bonni Goldstein is helping Sophie. Yesterday, she had her first full-blown seizure in nearly ten days. That's some data right there, a pattern building. It's a fallacy peddled by neurocapitalists that we need more evidence. Here's what's working for us: less pharmaceuticals, more cannabis. Long-term effects are now.

Sunday Inference

I spoke with a woman last week whose baby recently had been given phenobarbital as a first-line defense when the baby developed seizures. Twenty one years ago, I stood in the hallway of a New York City hospital and expressed concern about the effects of phenobarbital on the developing brain of my own baby. What's a couple points drop in IQ? the doctor said, and that was that.

I spoke with a woman a couple of weeks ago whose baby recently had been given keppra as a first-line defense when he developed seizures. The doctor said that a small percentage of people taking the drug get very angry and irritable, she said. Yes, it's called "keppra rage," I told her. About ten years in to her diagnosis and shortly before it was approved for use, Sophie took keppra. It did nothing for her seizures, I told the woman,  but she never developed any rage.  Last night, the woman texted me that the baby had another seizure. He has a cold, the mother told me. I had hoped the medicine would work. I said, Viruses are notorious for precipitating seizures. All bets are off.

My friend Allison has been treating her son with cannabis from the get-go. Would I have done so had I been presented with the option? Did I feel resentful of nineteen years, wasted? No more I am not a doctor, but...

Yes, she said. Yes, I would. Yes.

Back to Regular Programming

This is the last bit of sweetness you'll see or read for today.

I've got the first of a regular column up on marijuana.com that I hope you'll check out. As I mentioned last week, I'll be writing regularly for them and eventually migrating over to cannabis.com. I'll be doing interviews, human interest and news stories as well as features. The column I envision will be a series and will chronicle our own path toward healing. It's very exciting and a tad intimidating, and I'm reminded every single moment I'm doing it how positively revolutionary this all is. Honestly.

Today I read yet another article about another state's legislature dithering around with medical marijuana laws. I've listened to presidential candidates, "top" neurologists and so forth and so on speak gravely of the need for more research and their fears and concerns about everything from predictions of a sort of stoned populace driving willy nilly to children accidentally ingesting giant cannabis edibles and the country's morals literally going to pot.

Can I hear a sigh?

Can you smell the bullshit?

May I rant for a moment?

Call me crazy, but these doctors, lawmakers, politicians, pharmaceutical companies and pharmacists don't give a "rat's ass" about the "dangers" of marijuana or the health of children. They care about power and money. Diabetes is one of the nation's leading health scourges, isn't it? And the numbers of children diagnosed with diabetes has skyrocketed. Let's not even get into how many children, at ever younger ages, are being diagnosed with various mental health disorders and learning disabilities and then given drugs to "help" and "control" them, even as the numbers continue to rise and no real long-term studies of the effects of these drugs over time exist. Any child can go into a 7-Eleven or some other junk store and purchase a Coke or a Slurpee or any number of chemical and sugar-laden drinks that rival the size of a grown man's head and drink it down -- hell -- a few times a day if that kid is so inclined. I believe a Big Gulp has nearly 5x the amount of sugar recommended as a daily allowance. I suppose it's still arguable whether the grotesque over-consumption of sugar, particularly in processed foods and sodas, is at the root of the diabetes and obesity epidemics, but you can bet those big companies like Coca-Cola and McDonald's are rarely admonished or restricted from hawking their wares in ever more sophisticated ways to children. Hell, there's a McDonald's in the lobby of the Children's Hospital of Los Angeles, frequented by disadvantaged families visiting the MediCal clinics and bald children in plastic red wagons pulling IV poles. Children's welfare, my ass. In Utah yesterday, the Mormon-heavy legislature passed a bullshit and arguably useless cannabis bill, despite the entreaties of numerous patients and families. Guess who wrote the bill that effectively sabotaged an earlier, more scientifically sound one that patient and family groups supported? A legislator who is a pharmacist. Guess who advised the legislator and helped to write the bill? A doctor who founded a company whose mission is "to make quality of life better through oral, non-psychoactive cannabis products." Guess who put out a special edict several weeks ago condemning medical marijuana? Prophet Monson of the Church of Jesus Christ of Latter Day Saints.

 I'm not making this shit up.

Every now and then, you have to get up off your knees where you've been for months and years, begging the Powers That Be to help me, please please help me, and stretch to your full height standing and ask them to disengage themselves from religion, special interest, power and cash.   Every now and then you might have to scream at them.

So, consider that a scream.

The New Job

Woman Writing
Picasso

I've alluded to The New Job during the last couple of months, so here it is. I'm writing for a company called Weedmaps and their websites: marijuana.com and cannabis.com. I'll also be helping to edit other material. It's full-time. I'll be posting several times a week -- interviews, columns, interesting stories that are all related to medical cannabis and human interest. The marijuana.com website is up and running and is an important resource for all things marijuana-related. The cannabis.com site is a work in progress, and eventually my writing will primarily be featured there. I can't begin to express how grateful I am for this job to have come my way, how perfectly it works out for me both financially and flexibly. I will work from home. If Sophie has a bad day and needs to stay home, I can still work from home.  Praise Jesus and hallelujah! Or shall I say praise Cannabis! The irony isn't lost on me that I am still a person who hasn't "partaken" in nearly thirty years, that I got this perfect job because of the often torturous path to healing for Sophie, that I can now parlay my skills into educating and inspiring other families to look at cannabis as a healing plant.

My first article, an interview with a wonderful writer, mother and dear friend and compadre is up today. You can read it here:

Making THCa at Home: An Interview with a Mother


Please leave a comment on the site if you feel like it. And I'd really love it if you'd give me some ideas and suggestions for future interviews, articles and so forth that I could work on. Like everything else in life, it's a grand collaboration, and I wouldn't be here if it weren't for you.

Reflections

I can't get enough of my new dining room set-up. A lot is changed around here. Oliver gave me that sitting Buddha with the pot that holds incense. I don't like incense, though, so it's empty which I think is more fitting. To be empty. Emptied. I remember being a little girl at church on Sunday and nearly fainting and certainly gagging when the priest walked down the aisle swinging that thing around with incense wafting out and around. I felt as if I were suffocating. Perhaps that's symbolic of my wrestling and then fleeing the Catholic Church. Perhaps it's just that I hate incense. When Oliver gave me the little Buddha incense holder, he included a box of cheap incense, and he lit it and immediately the house smelled like one of those stores that sells things for the spiritually materialistic. I'm actually prone to spiritual materialism -- I love mala beads around my neck and wrists, my red Buddha necklace, my turquoise Buddha ring, the Mother Mary cards, my Book of Changes, the Poet Tarot Cards. But no incense.



I took a shower tonight, and while the water beat down on me, I thought about jinxes. I thought about Sophie doing so well for the last couple of days, and maybe it'll only be the last couple of days, but it's been a good couple of days. Have we found the sweet spot with the strain (ACDC) and dosage ( a little higher)? Or is it something else? Is it the hot, dry weather and absence of pressure? Is it just -- well -- just? It occurred to me as I leaned my forehead against the tile and closed my eyes that despite the passage of nearly 21 years, I still know so very little about what makes my daughter's brain tick -- and tick too much. Despite those 21 years, and countless showers where I had very similar thoughts, where I crouched down and cried while the baby screamed in the bedroom, where I leant into the tile, exhausted, the tile perhaps like Roman stone, trod on, trod on, trod on, I still know so little. My sighs and tears and musings are always the same, an endless cycle, samsara. Suffocating. To be emptied. An empty vessel with room for gratitude.

Two Good Things

Sophie's turned the proverbial corner and appears to be responding to the new strain of cannabis.  I'll provide the details if you leave a question in the comments below, but for those who are still struggling with getting cannabis or using cannabis, know that patience is in order and that much tinkering has to happen. I still believe that this natural plant medicine is vastly preferable to anything offered by pharmaceutical companies, and I'll be able to write more about it as I learn more (which is a given very soon because I am starting a new and full-time job in the cannabis information business). More on all of that at some other time. Can I hear an Allelujah? 

Within one week of switching to this new strain, Sophie's seizures, which had become near constant and were characteristically worsened by a virus, have dropped down to -- well -- next to none, and that's with a full moon shining in the Los Angeles night sky. I, too, was reduced to a wreck or to a sort of full-figured wraith, transparent, despairing. It was like days of old around during the last few weeks, the days before cannabis when I plead on my knees to a god in whom I had no belief. My night-time psychotic self had returned, the woman who lies in bed churning over years past, convinced there is something I've done wrong, a dark hours before dawn narcissist. The boundaries between Sophie and me are porous at best, and if I were to be totally honest, I'd say my identity is so entwined in hers that there's no getting out. Singing the blues, really.

when my baby doing bad, I turn sad.

Speaking of blues, Mary Moon suggested that I attend a house concert last night featuring a friend of hers, Spencer Bohren. It turned out that the house was literally in my neighborhood and about four doors away from the original house we rented when we first moved to Los Angeles eighteen years ago.

This man could sing and write and play and spin stories and spun me into a mesmerized state. I talked at length to his beautiful wife Marilyn, also a friend of Mary's and felt as if I'd known her forever. I also sat on a couch next to a legend -- Harry Tuft -- considered to be the godfather of folk music in the Rocky Mountain region and whose center was visited and revered by people like Bob Dylan and Joan Baez and the Mamas and the Papas and all manner of blues and folk musicians. Holy mackerel! He introduced himself to me and said it'd been a long day, that if he fell asleep I was to poke him awake, and when I told him that I wouldn't do that, he told me that he had narcolepsy and I very well should. Spencer dedicated the first song to Harry, a Bob Dylan tune, and Harry whispered in my ear that it'd be amazing, and it was.  The whole night was amazing, a perfect cap to and for a week and a woman turned glad from bad.

If you want to listen to and buy Spencer's gorgeous music, go here.

On Being Beautiful and Angry

Tonight I dragged my sorry ass self, newly recovered from a cold and cough, to a screening of a remarkable documentary about the movers and the shakers of the feminist movement from 1966-1971. It's called She's Beautiful When She's Angry.

Wow, people. Just wow.

I watched the movie with a few hundred other women and a scattering of men in an historic building in Los Angeles called the Ebell. The women were of all ages and races. The movie is funny and moving and most of all, rousing. I feel such gratitude toward these women who came before me, who so doggedly and -- yes -- angrily demanded their rights as equal citizens. The movie isn't just about white, straight women but about all women, including women of color and homosexual women. It does an excellent job, too, of demonstrating that despite all the radical goings on of the time -- the anti-war movement, the student rebellions, black power, etc. -- women were left out and not counted even by these so-called liberals and radicals. I sat on a little hard-backed folding chair and laughed and teared up at the audacity of these pioneers and radicals, realized how much I take for granted and how much left there is still to do.

I felt galvanized by these women and their history, and I felt strengthened and more accepting of my own anger and radicalism -- not just about women's equality and, particularly, reproductive rights that are being whittled slowly away, but also by this cannabis movement and my role in it as, often, a quite angry mother in confrontation with an established power structure.

I received an email the other day from our local Epilepsy Foundation affiliate with an announcement of the annual Epilepsy Pipeline Conference in San Francisco. Last year, I attended this conference and was an invited speaker on a panel. I spoke of our experiences with cannabis and didn't get the greatest reception from the physicians and "professionals" in the room -- they were either dismissive or uninterested, one was downright hostile -- but I had numerous people come up to me privately and confide their gratitude that I had spoken so openly and honestly about our experience. One guy told me that when I spoke it was as if a bomb had gone off in the room and blown everyone up. I have to say that my ego surged when he said that, but deep down I was embarrassed, too. As a woman pushing against boundaries in the medical world (and it started long ago for me and well before the cannabis revolution began), I haven't always been confident. I'm even now not always confident, particularly when I am admonished for being angry. I've been called too angry, too outspoken, undiplomatic. Several relatives have publicly shamed me and called me a miserable person. Someone anonymous not too long ago left the condescending comment You're a great writer, but you're too angry. I'm going to be honest and say that those comments hurt me, that I hold remnants inside of me that dictate what a good girl is, what a humble woman does, what makes a lady, and that I'm none of those things.

This year's Epilepsy Pipeline Conference, as far as I can see (and the schedule could very well change), has no representation of cannabis as therapy except from a huge pharmaceutical company. This doesn't surprise me, and my initial impulse is to feel cynical and bitter. Now, don't think that I haven't done a lot of soul-searching, wondering if maybe I am too angry and combative, that I'm not going to ever be invited to speak at any of these functions again because I don't tow the party line. I wonder if I should be less angry, perhaps even tone down the truth of our story with the goal of persuasion. Is it better to tone it down and try to reach more people? Is it better to compromise one's truth?

Nah.

Watching this documentary and seeing what those women (and those before them who struggled for suffrage) did and how they handled oppression opened my eyes and strengthened me.

I am beautiful when I'm angry. You are beautiful when you're angry.

Here's a trailer for the movie:



Here's the website with information about screenings and the forthcoming DVD issue.

She's Beautiful When She's Angry