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

Conservator - A Thinly Veiled Horror Story

con·ser·va·tor

kənˈsərvədər,kənˈsərvəˌtôr,ˈkänsərˌvādər/

noun

1. a person responsible for the repair and preservation of works of art, buildings, or other things of cultural or environmental interest.

   • US

     a guardian or protector.

     
     

     "the court does not need to appoint a conservator to handle an incapacitated person's affairs"

I am Sophie's conservator. Every two years, the government checks in on our relationship, which is as it should be, I guess, although the whole process is akin, figuratively, to getting stabbed in the heart. It's the same feeling as listening to the robo calls from Sophie's LAUSD high school that describe the various senior year festivities and activities. Sophie has been a "senior" for over three years, yet she won't be going to college day or career day or military sign-up day or cap and gown ordering day or prom day or -- you understand the drill. If my imagination were a work of art, I'd say that as its conservator, I let things roll, I elaborate, I preserve --

It is what it is, as they say.

Yesterday, a worker from the city came to our house to interview Sophie to make sure that she still needed a conservator.  She was terrified of our dog Valentine, the goofiest poodle on the planet but otherwise a mild enough sort who immediately greeted Sophie. The dog greeted her and the worker greeted Sophie, that is. After she finished asking me a bunch of questions about Sophie's needs and medications and doctors and health history and educational status, she told me that she needed to ask Sophie some questions. I raised my eyebrows. I had kept Sophie home from school for the meeting, and she was sitting in her wheelchair humming. If you're a new reader to the blog, Sophie doesn't hum songs. She makes a steady monotonous sound through closed lips that is at once an expression of agitation (meaning she wants to get up and out of the chair and go outside), of discomfort (of what I have no idea) or perhaps just of a self-stimulating nature that feels good. Depending on my mood or where I am in the caregiver cycle, the sound can make me feel alert to alleviating her discomfort, amused (I have my tolerant side), agitated (okay, CRAZY) or indifferent. Yesterday, I felt amused by Sophie's insistent hum yet my heart throbbed from the ax that the worker had metaphorically thrust into it.

I'm a conservator, a person who guards and protects my adult daughter. I'm also responsible for the repair and preservation of a work of art -- my imagination, I think. A thing of cultural interest.  My writer mind. I listened with amusement to the questions so earnestly asked by this cheerful, bland woman.

Sophie, do you know who you are?

Silence. Hum.

Sophie, do you need an attorney?

Silence. Hum.

Sophie, would you like to vote?

Silence. (I might have interjected here over the hum with my own answer which would be Yes! And hopefully get the asshole and his band of billionaires out of the government!)

We tolerate these things, we conservators.

The worker turned to me, still earnest yet apologetic. We have to ask these questions because there are those who would take advantage of people's disabilities. I told her how much I appreciated that care and attention. I meant it. She stood up, and I stood up and she handed me the paperwork and I put one hand on Sophie's head as the worker said good-bye. Then she said, Plus, you never know! Sophie might wake up one morning and start talking and recover!

Reader, it was then that I removed the ax from my own heart and brought it over the worker's head, cleaving it in two. 

Valentine sniffed around a bit and smiled and Sophie hummed.

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.

Advocacy for The Werc Shop (with correction**)

Jeffrey Raber, PhD, founder of The Werc Shop in Pasadena
via LinkedIn

Read this:

Leading Medical Marijuana Lab Raided in Pasadena

And this, particularly the comments of Dr. Raber toward the end of the article:

Parents in World of Children's Cannabis Fear, Desire Regulations


Here's the letter I wrote in support of Dr. Raber. If you live in California and would like to help us vouch for Dr. Raber, please email me and let me know.

April 9, 2015

To: City of Pasadena

My name is Elizabeth Aquino, and I am the mother of a twenty year old young woman who has severe and uncontrolled epilepsy as well as developmental disabilities. After a lifetime of seizures and over twenty medications that failed to help her, Sophie now experiences 90% fewer seizures and innumerable favorable side effects with Charlotte’s Web cannabis oil. As you can imagine, our journey toward this success has been extremely difficult, and we rely completely now on the integrity of the cannabis product to ensure that our daughter continues to do well.

I understand that this week, The Werc Shop was raided and that the owners, including Dr. Jeffrey Raber, were arrested. I am dismayed not only because we, as well as hundreds of other families with children like ours, depend upon Raber’s excellent business to test and insure that the product we are using has the highest standards, but also because I have had the pleasure of meeting Dr. Raber at a benefit dinner and found him to be a man of integrity, humility and great character.

I’m not sure if those in authority have any idea of what sort of service The Werc Shop provides and or how high its standards and integrity are. The cannabis medicine that we are giving our daughter MUST be pure and its potency and profile described. Dr. Raber’s work at The Werc Shop is essential for my daughter’s medicine, for our community and for anyone desiring this life-saving medicine.

I am a long-time healthcare advocate and have worked on the boards of several national non-profit foundations, including the Epilepsy Foundation of Greater Los Angeles. I have been an expert parent and family advocate for children’s healthcare organizations, including the National Institute for Children’s Healthcare Quality. I am concerned and outraged that Dr. Raber has been arrested and believe him to be falsely implicated. I hope that these charges will be dismissed immediately and that The Werc Shop can return to doing what it does so professionally and so well: ensure that the medicine we get for our children is pure.

Thank you for your attention to this matter.

Respectfully,
Elizabeth Aquino



**An earlier post of my letter included someone else as owner of the shop. I have corrected my letter to include Dr. Raber only. The cited article has his colleagues names.

Wishing Trees and Medical Marijuana Laws

I forgot to tell ya'll about the wishing tree. I bought that craft kit years ago and stashed it somewhere that I forgot about every year. I'm not a crafty person but have the impulse to be one. I remembered it this year, though, and set it up. Basically, it's a tree with a bunch of branches that you decorate with paper bluebirds of happiness and pink flowers. There's a little box that sits beside it filled with strips of pretty paper. Guests take a slip of paper, write a wish for the birthday girl on it, fold the paper and hang it from the tree. Sophie got the nicest wishes -- no more seizures, sweet dreams, twenty more years, a happy life, etc. -- and that tree looks so cute that I might keep it up all through the spring. Pretty soon my house is going to resemble a tschotchke shop. I can't stop buying candles, especially if they're decorated on the outside and smell like Tabac/Myrrh, and do you know about these fabrics called Kanthas? I have them draped over dirty furniture, my ugly old upholstered headboard and a funky chair that I bought at a yard sale for $5 in Nashville, Tennessee over twenty-five years ago. If I close my eyes, though, I imagine myself in a sort of Vanessa Bell/Virginia Woolf Bloomsbury aesthetic.

Of course, they were real artists, literally painted their own furniture and wouldn't have been caught dead (with stones in their pockets) assembling a cardboard wishing tree, but a woman can aspire to a certain joie de vivre in a cluttered interior.




On another note, I read today that Senators Rand Paul, Cory Booker and Kirsten Gillibrand, a Republican and two Democrats, respectively, are introducing a bill that would end the federal ban on marijuana and institute a series of reforms which include downgrading its status from Schedule 1 to Schedule 2. This is a positive step for any number of reasons, but I felt a prick of annoyance at the language used in the article. The bill will be unveiled, it's a significant step, a first for the Senate, yadda yadda yadda. The operative word is introduced, and the good Lord only knows how long that introduction will go on, given some of the minds of our elected officials and, let's face it, the dodo birds they represent. Dodo birds will take oxycontin for their back pain or give their kids antidepressants and anti-psychotics and all manner of ADHD drugs, but what's going to happen to the moral fabric of this country if people start smoking pot all the time? Don't get me wrong. I'm glad the Powers That Be are getting off their asses and bringing this to the floor tomorrow morning, but I feel irked, too. I responded on Facebook with this comment:

I guess things are moving forward, albeit slowly. Maybe baby steps are good, but there's something always a bit discomfiting when the "powers that be" come together to "approve" of something that "the people" have been wailing about for decades. It bugs me, to tell you the truth. Just do it.

Maybe I'm just an old, jaded. burnt-out reactionary secret anarchist-cum-socialist curmudgeon who smells the stink of patronisation and paternalism. It reminds me, a bit, of the times the Pope comes out with an encyclical advocating some kind of moral order or decides that the faithful need to go easy on the gays. It's rare for someone in power to attribute some action on their part to the people who have actually made things happen, much less to say mea culpa or, in the case of this marijuana prohibition, the collusion of big business and conservative social policy has decimated the lives of tens of thousands of people who might have benefited from medical marijuana during the last seventy-five years, so let's get this thing done and do it now. And while we're at it, let's denounce William Randolph Hearst, Mr. DuPont and Andrew Mellon who conspired to remove access to this beneficial plant so that they could continue to reap enormous and obscene profits from timber, chemicals and oil and make what once was a medicine to ease pain, cure disease, stop seizures and fight inflammation and bacteria an evil substance provoking rape, immoral acts and thoughts and even murder (that's the history of marijuana, but we're supposed to revere these titans of business and capitalism and philanthropy).

Anyhoo.

I'm probably better off squirreling around my ever-growing agglomeration of wishing trees, books, Kantha fabrics and tobacco candles and doling out the cannabis oil than kneeling in some sort of obsequious gratitude to a bunch of senators in a Georgian building across the country.

My Thoughts on the Fly: Sonjay Gupta's WEED 2: Cannabis Madness

from Spike Lee's great movie Do the Right Thing

My initial thoughts on the CNN/Sonjay Gupta special on medical marijuana because I can type faster than I can talk:

1. No one spoke about the dart board game that neurologists currently play with epilepsy drugs. I've had doctors tell me that prescribing epilepsy medication is "just as much an art as a science." 
2. I think any shred of hope Governor Chris Christie had to be President of these United States is officially dashed. I've always loathed the guy, but I have to say I felt almost sorry for him given how CNN chose to edit his parts in this story. Yikes.
3. Many emotions going through my head -- the obvious whys and what ifs for our Sophie, anger that political bullshit has stymied this perhaps revolutionary treatment for our children, cynicism that Big Pharma is chomping at the bit, dismay that people weren't really educated on this special about the often devastating side effects of current epilepsy treatment, including surgeries like hemispherectomies. Seriously, people -- how many people do you think are walking around with one half of their brains that knew what the long-term effects of this might be?
4. Grateful that after working our asses off educating ourselves about medical marijuana and finally getting it (thank you Realm of Caring, Ray Mirzabegian, Jason David and the Stanley brothers, Sophie is doing PHENOMENALLY WELL. She was having up to five tonic-clonic seizures a day and hundreds of myoclonics and partial complex episodes as well as atonic drops. She is now going literally WEEKS WITHOUT A SINGLE SEIZURE, and when she does have one, they are much less severe and she recovers quickly. We have been able to begin weaning her from one of the most addictive anti-epilepsy medications in the arsenal, and it hasn't been nearly as difficult as it has been in the past. (Sophie has had trials of nineteen drugs in her nineteen years).
5. Our family is in a sort of state of shock about all of this, I think. We kind of don't know what to do with ourselves. When I watched the special, I teared up a bit for Vivian and her family, but my heart was broken for my family, for my boys and for Sophie, who have endured this shit for so many years, as well as so many other families.
6. What the hey, Obama: DO THE RIGHT THING.

Gulliver Travels to the Land of Morons

In the year of our Lord 2010, the voters of the United States elected the worst Congress in the history of the Republic. There have been Congresses more dilatory. There have been Congresses more irresponsible, though not many of them. There have been lazier Congresses, more vicious Congresses, and Congresses less capable of seeing forests for trees. But there has never been in a single Congress -- or, more precisely, in a single House of the Congress -- a more lethal combination of political ambition, political stupidity, and political vainglory than exists in this one, which has arranged to shut down the federal government because it disapproves of a law passed by a previous Congress, signed by the president, and upheld by the Supreme Court, a law that does nothing more than extend the possibility of health insurance to the millions of Americans who do not presently have it, a law based on a proposal from a conservative think-tank and taken out on the test track in Massachusetts by a Republican governor who also happens to have been the party's 2012 nominee for president of the United States. That is why the government of the United States is, in large measure, closed this morning.

Read more: Government Shutdown - The Reign Of Morons Is Here - Esquire 

I'm on the phone

There'll be scant blogging on a moon, worn as if it had been a shell over the next few days. I'm sitting at my desk, on very long conference calls, doing some bizness for the government. And, no, I'm not wire-tapping or eavesdropping or figuring out how to be a whistle-blower and gain sanctuary in Russia. I am in my pajamas, drinking coffee and trying to concentrate on Some Very Important Initiatives. During my down times, I might post some poetry, so please come back.

SSI -- Mission Almost Accomplished

So, if you've been keeping up with my efforts to obtain Supplemental Social Security for Sophie, now that she's eighteen years old, I am happy to report that the new debit card and first check has arrived. While the final approval will take around six months, Sophie is already eligible to receive the million dollars per month owed her, and I bought the pretty blank book pictured above to enter all of her expenses.

In all seriousness, I am so very grateful for the help Sophie is receiving from our government, from your taxes and mine and appreciate that this entitlement is one not afforded to many in this big, old world. A couple of years ago, I used to read and periodically scuffle with a very conservative lawyer blogger in Texas. I remember a post of hers where she paraphrased some politician or right-wing pundit as saying that those "on welfare" were never thankful enough for it. You know what they were talking about -- the welfare queens riding around in Cadillacs and using their diaper money to buy flat screen televisions, lazy and shiftless and unwilling to work, ungrateful for the cash raining down on them from our pockets. It rankled me then, but not in the way I imagine she or the pundit would want. I know, for a fact, that most of us receiving assistance would rather not have it be so, but that we are grateful beyond imagining for it. I imagine that it's the rare person who isn't grateful for any help at all taking care of their young adult with disabilities. We probably can't grovel at the world's feet, but it's pretty close.

For all of you out there who are waiting for your own children's 18th birthdays to come, hang on. The process was far simpler and more efficient than I had foreseen, another dreaded milestone that came and went with far less fuss and angst than I imagined.

So, in case you're wondering,  the government is downsizing, budgets have been cut, and the times I attended conferences during the Bush administration -- ahem -- I stayed in far nicer accomodations than the outlier hotel I'm in right now. Despite shrinking funds, though, the work goes on, and we'll continue to put our heads together and collaborate on how to improve the lives of children with epilepsy and their families.
I won't be able to blog much until later in the week, but my presentation on Monday uses that wonderful exchange we had with the young doctor seeking a residency in pediatric neurology a couple of months ago -- if I could figure out how to link to it on my phone, I'd do it, but the title of the post is "Blog Call" -- you can search for it if you're so inclined!
Here's the sad, little coffee maker in my bathroom, and when I flushed the toilet tonight, the color of the water was an orange pink sunset. I knew it wasn't from me, so when I notified the front desk, the manager said he had no idea why and that perhaps the water was rusty in the tank. Bless his heart.
I'm just telling you these things so that you don't think everyone working for the government is living high on the proverbial hog.
Oink.