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.

March Madness

The Department of Motor Vehicles, Los Angeles. CA 2017

My understanding of what's going on in this country is shrinking, and I find myself opening up articles, reading a few sentences and then sighing in exasperation or grimacing in disgust or taking in breaths to allay anxiety or rolling my eyes heaven-ward in bewilderment.

Are we supposed to understand what's going on?

I hate to say it, but I rely almost exclusively now on acronyms to express myself in this area. WTF?

I remember this quote by the great 18th century satirist, Jonathan Swift:

It is useless to attempt to reason a man out of a thing he was never reasoned into.

and

I never wonder to see men wicked, but I often wonder to see them not ashamed. 

We're all Gullivers here, methinks.

Sophie went back to school today for the first time in weeks, other than the day I brought her in for her birthday. I don't feel like going over what's been going on because, frankly, I'm so tired of the whole shebang, and I imagine you are, too. Suffice it to say that she's trending better even as we slowly wean her from the hideous benzodiazepine and supplement more aggressively with THC. I'm trending better right along with her because you know where she stops, I begin or where I stop, she begins and it's a fine, fine line. I also got acupuncture from our beloved Dr. Jin.

Yes. THC, baby. The psychoactive stuff that I myself have not partaken of since the halcyon days of college at the University of North Carolina at Chapel Hill. If I'd had any idea that I'd be administering a pale green gold oily version of it to my seizing and drug-addled daughter thirty-plus years later, I would have smoked more and studied less. Hell, I would have joined in with something more than tolerance when my boyfriend and his housemates watched the Tar Heels play basketball with the sound turned down and the bootleg Grateful Dead tapes turned up.

Anywho.

If you hear Old Racist Alabama Elf-Man Sessions or Old Up Big Pharma's Ass Georgia Cracker Price make any cracks about medical marijuana being a joke, tell them I'm going to beat the crap out of them in my mind. My tiny little mother mind™ knows few boundaries, is exasperated, disgusted, anxious and bewildered and would love a good red neck upon which to project its conflicts. Just a little March Madness.

Speaking of conflicts and the Tar Heels, did ya'll watch that game yesterday? It was a nail-biter that I watched with my sons and Sophie. March Madness for sure. This is a picture of when we had fallen behind Arizona after an early 17-point lead. I have quite effectively brainwashed my sons to be ardent Carolina basketball fans, and they were nervous wrecks.

Here's a video of the action when things got really tense at the end, right before I began to fold the boys' clean socks into balls, a task that I turned over to them when they were about five and seven years old. So many boring white socks I thought I'd go mad, wrote Virginia Woolf. I thought I was going to have a stroke or a heart attack watching the last few minutes of the game and even folded The Brother's laundry and smoked a few cigarettes in between bong hits.*

Between the not smoking too much THC in college, giving Sophie enough THC to help her brain today and parenting my boys to cheer ardently for a team that I love despite not knowing a damn thing about the sport -- well -- I'm going to humble brag here about my parenting skills. I am bewildered, to say the least.















* Just kidding. Virginia Woolf did not write that.

This Side of the Grave

We've got to keep writing and making art.

I'm really trying to hold on to hope. Heaney's The Cure at Troy has sustained me for decades, and this morning I'm typing out the part I love right here, by memory:

Human beings suffer,
They torture one another,
They get hurt and get hard.
No poem or play or song
Can fully right a wrong
Inflicted and endured

The innocent in gaols
Beat on their bars together
A hunger-striker's father
Stands in the graveyard dumb.
The police widow in veils
Faints at the funeral home.

History says, Don't hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

So hope for a great sea-change
On the far side of revenge.
Believe that a further shore
Is reachable from here.
Believe in miracles
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there's fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.
It means once in a lifetime
That justice can rise up
And hope and history rhyme.








I feel not a little despair.

Did you see the thin lips of the men who canvassed the crowd, pushed through ahead of him last night as he walked in and then, again, walked out?

Struck last night during the presidential address by a memory of working with women who had been abused by their husbands, by the ways abusers show recalcitrance, how the cycle continues. His dark imposition on the world. The two behind him. I cried during his convention speech and cried again during the inaugural one. Last night I watched the widow turn her face up to the sky as he droned on and the glamorous daughter looked on and all the people cried. No tears from me. I choked on bile. I thought about the great war machine that all presidents turn on, the tyranny of the ultimate sacrifice, of valuing soldiers' lives more than those they kill. Samsara, illusion, delusion. Maya, the illusion or appearance of the phenomenal world.

This morning I see that the attorney general will not be supporting those states who have legalized marijuana, that he will, indeed, be marshaling forces to come down hard. He's got federal law to enforce and federal law pre-empts state law. I'm going to persist in believing in miracles and cures and healing wells even as prisons continue to fill and children die and the sheep are driven over the cliff.

I'm going swimming today, may a further shore be reachable.

Spinning

At the osteopath's office

The biggest spider that I have perhaps ever seen spun an enormous web that spanned about a quarter of the width of my backyard, and every morning I stood on the stoop outside my bedroom and looked at it, glinting in the sun. She sat in the middle of the web, waiting, I guess, for any errant creature to be ensnared. When I walked up to her, she sat there still, still waiting, and when I lay my finger on one of the anchor threads, she skittered up the vast and intricate highway and onto a cable that stretches the length of the backyard. This morning I stood on the stoop to see her, but she was gone and the web only a tattered thing, threads hanging.




This morning I struggled with Sophie or, rather, struggled with my despair as Sophie struggled with her seizures. It's been twenty-one years since it all started and nearly three weeks since Sophie's last hospitalization, and while her seizures are fewer and consigned to the early hours of the morning from, let's say, 4:00 am until 7:00 am when they come, one after the other, in her sleep, her days are spent very drowsy -- let's say totally drugged -- and she's unable to go to school. She is weak. She is on one drug -- a pretty massive dose, compared to where she was -- and CBD. I don't have any answers to the questions, so stop asking why? what do you think? what do They say? I don't know. I think nothing. They have no fucking idea.

I'm a giant spider, sitting in the middle of an intricate web that I've built over two decades. I'm waiting for an answer.

Here's what They did:

Sophie isn't having a lot of seizures, except for those few in the early hours of the morning (that reduce me to a raving lunatic, especially when I find her soaked in her bed and must strip it and her, even as she seizes) because she is drugged with Onfi, a powerful and dreadful benzodiazepine. She was, basically, ripped off of Vimpat, an anticonvulsant that she'd been on for over eight years (a small amount in the end, but a small amount of an AED is still an amount that the brain is accustomed to accommodating), but only after being infused with a giant dose of Vimpat (despite my misgivings about it causing hives) that was followed by giant hives covering her entire torso. Later, in consultation with a dermatologist, the three neurologists attending decided that the Vimpat and the hives were coincidental but, curiously, on the discharge papers the drug was listed under ALLERGIES.  She was hooked up to an EEG for over six days, had copious blood work, lung x-rays and urinalysis, was declared normal on entry and three days after had a urinary tract infection that called for an antibiotic (the only time she has been on an antibiotic in the last fifteen years was last spring when she had her wisdom teeth out). One neurologist suggested the drug FYCOMPA as an option to replace the Vimpat, but I pointed out that it was known to cause homicidal ideation, and The Neurologist agreed that he'd seen pretty serious behavioral issues with it. I'm not going to make any jokes here, so just go back and read those italicized words, Reader, and come to your own conclusions. I'd love it, too, if you read this post from over a year ago.

Remember that I don't have any answers. I'm a spider who's been spinning a web for years and I'm now waiting. The other option via the Great Minds of Neurology was, of course, to ramp up the Onfi and work with CBD (remember that CBD and Onfi together show promise in seizure control), so just like some game contestant, I picked that door and took Sophie home, drugged out of her mind on a nasty benzo and an antibiotic. We had absolutely no resolution to the problems that brought us to the hospital in the first place, although I guess there's some comfort in knowing that Sophie is now officially off Vimpat. They (the Powers That Be/Neurologists) have no idea about the CBD and how and if it'll work. If you remember, THE PARTY LINE is not to pay any attention to CBD other than to give a few winks as a sign of tolerance, at least until the big pharmaceutical trials do their slow slog of research. This is because the federal government still has marijuana listed as a Schedule 1 substance, along with heroin and cocaine, and has determined that it has no medicinal value and therefore no public entity can study it. Sophie had nearly two and a half years with dramatic success on CBD, and at no time during that period did any neurologist express any interest -- real scientific interest -- in that success. So we're sent home, basically, on our own, to figure things out. 

Fortunately, I have Dr. Bonni Goldstein to help me figure things out. We're trying a new strain of CBD, along with THC, this week, and I'm hoping that I can reduce the Onfi at least enough that Sophie can live. Yes, I said live, because what she's doing now is not fully living. She is drugged. I took her to the osteopath this morning, and she lay on the table under Dr. Johnson's gentle hands and actually opened her eyes and smiled at the doctor. It was the first time she'd smiled in weeks, and I know she felt some kind of release. I was sitting on the edge of the table, my hand over her legs, and I couldn't stop crying, so Dr. Johnson stood up and brought me a tissue, told me that it was all right to cry. All will be well, she told Sophie, all will be well.







This is as long of a post as that spider and her web were big. I was going to spin into commentary on Drumpf and the article I read here about his nephew who had infantile spasms, the same diagnosis as Sophie's back on that dark day in June of 1995. I was going to rail about health insurance, how premiums are going up not entirely because of the Affordable Care Act (as the conservatives say) but because our for-profit health insurance industry is utterly dysfunctional. This is my web, my rant and yes, it all goes together. Watching Sophie seize, Drumpf's nephew's infantile spasms, the removal of his healthcare coverage, the expendability of the disabled in our culture, my own fatigue and burn-out despite a wealth of support, pharmaceuticals, party lines, obtuse neurologists stuck in boxes, friends and family who just don't get it, Sophie's seizures, and I'm skittering away, my web tattered.

Here's what we need:

1. The federal government needs to deschedule marijuana
2. Pump money into researching its use as medicine
3. Keep Big Pharma out of it by fostering equal partnerships between patients, farmers, interested parties and researchers
4. Expand the Affordable Care Act into universal health coverage
5. Vote for Hillary Clinton for President and hold her accountable
6. Kick Donald Trump and every single racist, misogynistic, homophobic, xenophobic person who votes for and supports him out of the country and into exile on Guantanamo or one of those for-profit prisons filled with generations of black men who were thrown into them for possession of marijuana during the fake Drug Wars.

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.

Making Space for Stories (and an updated embed)

Those are new Benzo-Withdrawal Drool Bandannas that I ordered online. I couldn't resist the marijuana leaf one and hope it has extra powers as it wicks away the vile drug that permeates Sophie's body.




I don't have much to say or write today. I've been thinking a lot about an article I read in Philly Voice about vaccinations. The writer, Amy Wright Glenn, is a pro-vaccine journalist and mother, but she addresses those of us whose children have been injured or killed by vaccinations with unusual gravity and admonishes those of you who would argue against our beliefs and stories. Here is a brief excerpt:

Unfortunately, it’s easy to disregard the stories of vaccine injury, disability or death as statistically insignificant or inconsequential. Collectively we fiercely embrace a utilitarian ethic with regard to vaccine injury. The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.

I will say that this is, perhaps, the only article or opinion I've ever read on the issue that doesn't make me literally sick to my stomach or provoke what I can only call post-traumatic stress syndrome. Those overwhelming feelings come no matter the position, and after twenty years I'm only dimly aware that they are, perhaps, related to deep and damaged feelings of not being heard.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations. Even parents who were formally compensated by the vaccine court report feeling ridiculed. For example, in 2006, Florida couple Theresa and Lucas Black received a $2 million settlement along with $250,000 a year for medical expenses from the vaccine court. Why? Their 14-year-old daughter Angelica is permanently and profoundly disabled after receiving a standard round of inoculations at 3-months of age.

No matter how many times I try to reasonably talk or write about this issue, even going so far as to allow a renowned journalist to interview me and take photos of my family for National Geographic Magazine, I've never been able to convey what Ms. Glenn does so beautifully in her opinion piece. I know that's because of the emotion I feel and convey, natural given my own experience. I hope that you'll all read this piece, even those of you who joined in the social media mockery early this year or who believed that those of us who choose not to vaccinate our children or who do so on a different schedule should be vilified or mocked or pay fines or whose children should be kept out of school.

Nineteenth century British philosopher Jeremy Bentham argued that an action is morally permissible if it serves to increase the greatest good for the greatest number of people. Contrast Bentham’s utilitarian ethic with German philosopher Immanuel Kant’s deontological, or duty based, moral theory. According to Kant, individuals are not means to be used to justify an end, no matter how pleasing or far-reaching such an end may be. Individuals are “ends unto themselves.” In other words, we have value independent of our usefulness to society. 

Thank you, Ms. Glenn, not only from the bottom of my vast heart, but also from the top of my head and my intricate, mysterious brain. You have made space for our story.

Given these legal and market-driven realities, we must make space for the stories of families who pay the price of our increasingly mandated utilitarian ethic. 

Watch this, my pretties. It happened today in the United States Congress:

I love this man

LA's very own John Stewart of the daily rag:

Steve Lopez

(and just in case you're wondering, no, I don't smoke the evil weed -- at least I haven't in the past, oh, twenty-five or so years -- I have contemplated taking it up, though, and blowing the smoke into Sophie's face -- we haven't yet tried medicinal marijuana)