Wednesday, September 17, 2014

Cannabis Oil Questions Answered, #4


video



What are the side effects of cannabis on Sophie?


I have no idea whether that video will actually work, but it's of Sophie at school yesterday, smiling as she bounces on a giant ball. She smiles more and more often these days, and I am guilty of not celebrating that enough. Since she's been on Charlotte's Web, her seizures have not only been reduced dramatically, but she smiles more. The smile is a genuine one of pleasure -- even mirth -- and is not related to feeling "high," although even if she were high (impossible with Charlotte's Web), I wouldn't mind. It's funny what scares people, what throws them off, and certainly the psychoactive part of marijuana is what is causing the greatest uproar in our country. While this isn't an issue with Charlotte's Web and other high ratio cannabis strains, the fact that people are worried about someone like Sophie possibly getting a little high, frankly, cracks me up.  I've been doing this a long time -- watching constant seizures, spending thousands and thousands of dollars on drugs for those seizures, drugs that I have injected into, squirted down and even forced into Sophie over two decades. I've also watched her have the most debilitating side effects that you can imagine: screaming for hours on end (called irritability on package inserts or you just have to see what your tolerance is, said the  neurologist early on in our journey), agitation, constipation, constant moaning and rocking, dehydration, anorexia, sleeplessness (we probably didn't sleep more than 2-4 hours in a stretch for the first eight or so years of Sophie's life), rashes, fevers, extreme hunger, impacted stool (from the ketogenic diet), dizziness, lethargy, headaches, nausea/retching, extreme drooling, and the mother of all side effects: INCREASED SEIZURES OR NEW TYPES OF SEIZURES! However anecdotal (and Lord knows, we hate the anecdotal!), it's my firm belief that some of those twenty-two drugs we tried taught Sophie's brain to seize in different ways, sometimes in worse ways -- a sort of circumvention that her brain, ever more clever than the drugs, managed.

Other than some initial drowsiness that we noticed in the first few months of her trial of Charlotte's Web, which we realized is the result of being on a benzo, we haven't noticed any significant side effects other than positive ones, like better sleep, a heightened awareness, alertness and attempts to vocalize. While there are some reports of children and young adults trying cannabis and seeing very little change or not being able to tolerate it, from what I've read and experienced in talking to many, many people, is that our positive side effects are quite common. Sophie is smiling more often and more purposefully for the first time in well over a decade. It's easily the best side effect of medicine that we've ever experienced!








Other Cannabis Oil Questions Answered:

# One
# Two
# Three

Tuesday, September 16, 2014

DIY EEG

Alley behind Trader Joe's, La Brea

After delivering the lecture to end all lectures about everything I do for you, realizing all the while that when it's over 100 degrees outside, we're all a little irritable and therefore maybe I should just shut up, I ran out of the house and into my sexy Mazda and made a run to Trader Joe's where I bought what they all godd**n needed, and when I was paying, the cashier picked up the dark chocolate bar with hazelnuts and suggested that next time I make a cup of coffee, I should drop in a square of that chocolate and stir it around. Do it yourself, Mocha! he winked and he smiled and I smiled and then I took the alley way home and snapped that photo of a seemingly abandoned wheelchair facing what looked to be an artfully decorated junkyard. For a split heatstroke second I considered lifting it into the back of my car and bringing it home. Velcro straps, I thought, maybe a good cleaning? and then I came to my senses and pulled over only to take a photo, noticed the elephant roaring behind it all, thought about elephants in the middle of rooms, the unbloggable, long memories. Earlier today I was talking to my friend Jenny who asked how the EEG went last week, and I told her that due to the usual clusterfuck of insurance issues, we had to put it off. I was supposed to call the insurance company yesterday and request that they make it an exception and put the provider in-network. I was supposed to call the nice person who read my blog the other day when I talked about this, who happens to work for an EEG company and perhaps could help me. I was supposed to do both those things, but I let Monday pass, given the heat because I just couldn't do it, didn't have the patience or strength.and I let today pass given the heat because I just couldn't do it, didn't have the patience or strength, so I told my friend Jenny that perhaps I should do the EEG myself!  I screamed, A DIY EEG! and we continued to laugh. So, there's plenty of laughter, albeit the heatstroke kind, delirium from being too hot, but not the right kind of hot, elephants in the middle of rooms, wheelchairs in alleys and do-it-yourself EEGs.

There's still nothing to talk about but the heat


105 degrees and not even noon

Global warming, schmobal warming, saith the right wing pundits.

Monday, September 15, 2014

There's really nothing to talk about but the heat



Holy shit, right?

The Green Standard by William Rosenfeld and Jacob Strunk

Help make it happen
for THE GREEN STANDARD and the team!


Not only will we take viewers inside the world of legal marijuana farming and sale, but we will also take an unflinching look at how years of criminalization continue to shape our society – from the patient and provider to the policeman and prisoner. 


You don't need me to tell you that the world has seemingly gone mad of late, or madder than usual. I slink around my life looking in corners but not around the bend. I've been waiting for fortune cookie messages to materialize, for a ship to come in or at least pull into port for a spell. I'm waiting on something to inspire me, something to which I can give of myself. My cup runneth over. There are threads on Facebook, on the private closed cannabis groups that spew venom and politics. It doesn't make me crazy, but it makes me tired. I'm a tad tired. Bill Rosenfeld contacted me the other day, though, with energy in his voice. He and a colleague are making a small film, a documentary that might be a big film. Our connections were weird. A friend in the movie industry, a person in Pennsylvania, someone else who reads my blog -- The world is small. I told him that I'd help him to spread the word. So, here's the word. I hope you'll contribute to his campaign in some small way. If you can, do it big. I think what I meant to say is that the world is mad but it's also quite quiet, plodding along in goodness, too.





Here's the link to the campaign and to read more about The Green Standard.




Sunday, September 14, 2014

Friendship



In a circle of true Friends each man is simply what he is: stands for nothing but himself. No one cares twopence about anyone else’s family, profession, class, income, race, or previous history. Of course you will get to know about most of these in the end. But casually. They will come out bit by bit, to furnish an illustration or an analogy, to serve as pegs for an anecdote; never for their own sake. That is the kingliness of Friendship. We meet like sovereign princes of independent states, abroad, on neutral ground, freed from our contexts. This love (essentially) ignores not only our physical bodies but that whole embodiment which consists of our family, job, past and connections. At home, besides being Peter or Jane, we also bear a general character; husband or wife, brother or sister, chief, colleague, or subordinate. Not among our Friends. It is an affair of disentangled, or stripped, minds. Eros will have naked bodies; Friendship naked personalities. Hence (if you will not misunderstand me) the exquisite arbitrariness and irresponsibility of this love. I have no duty to be anyone’s Friend and no man in the world has a duty to be mine. No claims, no shadow of necessity. Friendship is unnecessary, like philosophy, like art, like the universe itself... It has no survival value; rather it is one of those things which gave value to survival.
C,S, Lewis, The Four Loves 


Last night, I had the last of my extended birthday celebrations on the top of the Hotel Wilshire in mid-city. A few of my dearest friends met me at this funky, little rooftop bar and restaurant where we might have been the grannies of most of the people there. 






As you can see, a teeny tiny little square pool sat in the middle, and when we arrived several tattooed and bikinied gals were casually sipping on their fancy cocktails, looking exactly like a live Barbie Pool set-up. Dang! I should have brought my bathing suit! I said to my friends and felt a frisson of fear at the prospect. We ordered drinks. I had some concoction of gin and elderflower liqueur, lime juice and soda that gave me a perfect buzz after about five sips. We ordered appetizers and sat around the table for hours, discussing everything from breasts to men, laughing most of the time. Somewhere in there, I also had a mule made with lime, ginger beer and vodka -- it wasn't a Moscow Mule, but it was even more delicious. I opened ridiculously fine presents -- a Kantha, an antique bowl and goodies for the bath, and we finished with peanut butter and jelly beignets and strawberry shortcake. By that time, the Barbies had left, the hipsters had taken over and we rode the elevator back down to the street and went back home. I would be lost without these women friends -- the ones that I was lucky to have with me last night and the scattering rest of them, really, all over the world. Thank you, ladies. We do, indeed, have an affair of disentangled, or stripped, minds.


Saturday, September 13, 2014

Saturday Three Line Movie Review



The Trip to Italy
dir. Michael Winterbottom


Two handsome in the way that I like middle-aged men go on a culinary tour of Italy, retracing the steps of the Romantic poets, namely Lord Byron, keeping up a steady stream of witty banter and driving along the requisite Italian roads with breathtaking views of the Mediterranean . They do brilliant improvisations of famous actors while bemoaning their own advancing age, receive the exquisite offerings of food brought to them in perfect Italian restaurants, converse with their families back home and people they meet on the road, conveying in a charming and poignant, utterly original way what longing means -- even what it means to be human. I floated out of the movie to strains of Italian opera and am now officially completely smitten by Steve Coogan.











Other Three Line Movie Reviews


Get On Up
Begin Again
Chef
The Immigrant

Cesar Chavez

The Grand Budapest Hotel
Gloria

Labor Day 
Philomena

Friday, September 12, 2014

How We Do It: Part XLVIII




It gets better.

Me


Sophie was scheduled for an ambulatory EEG this afternoon at 3:00. It's been on the books for about a month, but I haven't been thinking about it because I hate the whole process. The ambulatory part is a godsend -- no hospital! -- but there are all the leads, the stinking glue, Sophie's curly, curly hair, the clean-up, the smell and, of course, the significance. Sophie has always had an abysmal EEG -- the kind of EEG that is, frankly, pretty hopeless. She's probably had at least ten in the last nineteen years, most of them in-hospital. Every single one is wildly abnormal. I won't give you the jargon. She hasn't had one in three years, though, and we thought it was time, particularly given the dramatic reduction in her clinical seizures since we started giving her cannabis oil. Yesterday afternoon the lab called to say that the insurance company claimed Sophie wasn't a member, so I went into my clipped and efficient mode and got that ironed out (our id number was transcribed wrong). This morning, I got a call from the EEG lab with the news that they are Out-of-Network for HealthNet and that we would be subject to the 50/50 rule after the insurance company pays the usual and customary rate. How much is that?, I asked. The financial person told me that, historically, insurance companies have determined the cost to be around $120, so I would be reimbursed for 1/2 that or $60. How much is the EEG? I asked. She said, Around $1700 or so. There is no other ambulatory EEG facility in the area, and MediCal is not contracted with them either. My options at this point are to admit Sophie to the hospital for an overnight EEG (out of the question), pony up and pay (the usual choice that has strained our finances for nearly twenty years), or appeal to HealthNet and request that they pay the in-network rate (throw my head back and laugh maniacally). Reader, if you're still here, please scroll up to the video that I posted at the top and forward to :23 seconds, maybe one of my favorite scenes in the movie, when Benjamin tells his parents that he's getting married, and Mrs. Braddock throws her head back and screams the most fantastic laugh you'll ever see on film. I am Mrs. Braddock, and that's what I do in my mind whenever I have situations like this EEG one. I no longer feel stressed, to tell you the truth. What might have caused me to weep copious tears, to tear at my hair, literally, to feel the poison of anger and adrenaline coursing through my veins, has disappeared. Mrs. Braddock enters my mind, and I throw back my head and let out a screaming laugh. After nineteen years, I'm here to tell you that it gets better. That's how I do it.

Thursday, September 11, 2014

The Landlocked Life

Weeki Wachi Springs


This morning I met Moye at a neighborhood pastry place for a belated birthday breakfast. She stuck a candle in the bunch of hair that I had pinned to the top of my head, and then we lit it and I burst into flames and disappeared. Just kidding. Well, that wasn't funny, really. We actually sat down and drank delicious coffee, ate this incredible concoction of bread, exotic sauteed mushrooms and eggs and shared some divine confection -- a cannelle, I think it was, all crispy caramelized on the outside and eggy soft in the center. We talked about our children and shared some memories of our high school years (we grew up together in Atlanta!) and we laughed together like we always do. She gave me a beautiful bracelet/necklace that I promptly wrapped around my wrist and a wonderful little book of poetry called Poems of the American South from the Everyman's Library Pocket Poets series. She wrote a beautiful inscription inside in her inimitable gorgeous handwriting, drawing my attention to the poems inside that include mermaids, Tar Heels and tender mercies. Thank you, Moye, for your years of friendship, for your sense of humor, your support, your beauty and your inspired art.


September 11th is always a sombre day -- isn't it? Our minds inevitably go back to where we were and how we heard and how we led our lives in those days following. There's a tyranny to sorrow, isn't there? What we are almost required to feel or remember? I'm always struck, on this day, by the strange paradox of the Never Forget communal imperative juxtaposed with the get over it mentality we place on individual loss. It's something I think about, particularly in regard to my friends who've lost a child or suffered some other big loss. There's a tyranny to sorrow, isn't there -- or at least a manufactured order to it.

I was going to post a poem on this somber day of Adam Zagajewski's -- a poem that I've posted before that I think is entirely appropriate, but instead I'll give you the link and post the mermaid poem from the book that Moye gave me.

It's all we can do, really.

Try to Praise the Mutilated World by Adam Zagajewski



My First Mermaid

I
In Florida, where these things happen,
we stopped at the last roadside attraction.

In a small theater decorated with mold,
behind a curtain sagging like seaweed,

a wall of glass held back a wall of water.
And there, in the springs, a woman in a bikini top

and Lycra fish tail held an air hose to her lips
like a microphone. What was she waiting for?

Into the great open bowl of the springs
a few fish drifted. They looked at the two of us.

They shook their heads and their bodies rippled.
Air bubbles shimmered in the filtered sun,

each a silver O racing to the surface to break.
We'd missed the day an unscripted underwater blimp

of a manatee wobbled into view. The gray, whiskered lard
of a sea cow or the young woman who sang --

lip-synched, rather -- some forgettable song,
her lipstick waterproof: which was the real mermaid?

II.
Given the weight of the water, nothing happens fast
to a mermaid, whether it's love or loss.

Not like the landlocked life, I wanted to warn her.
But here came a prince in street clothes,

trying to think thoughts that were heavy enough
to make himself sink to her level. His shirt ballooned,

a man turned not to a merman but a manatee.
Yet, in the small eternity it took for him

to grasp her greasy flipper, for her to find
his more awkward human ankle, and then

for them to turn, head over each other's heels --
a ring rolling away, too beautiful to catch --

they lived happily ever after.
Until one of them had to stop for breath.

Debora Greger (1949-)

Wednesday, September 10, 2014

I'm not a doctor, but.



International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months. 

Melissa Healey, The Los Angeles Times
 September 9, 2014


This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures. 

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy. 

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable? 

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.

Tuesday, September 9, 2014

Mint



I had one scoop of mint chocolate chip ice cream today from this very fancy ice-cream store, and it tasted like mint and cream, like the mint that grew in the yard outside the house I lived in on Long Island when I was a really little girl. I can't smell mint like that and not be plunged back to hiding in boxwood hedges, the only sound a muffled cry from some playmate wondering where I am.

Poetry of the Bureaucracy



Good News

We got the ccs denial
We'll go back to mcal with the denial
So we can get approval
Because mcal deferred the original request
We have only 30 days to respond
To that deferral.
It's past 30 days
We need to submit a whole new request
to mcal
Half-way there
Have a good day.

-- Elizabeth Aquino
via an email from Anna of Bohemia


I went on a walk this morning and listened to poetry the entire way, looked up into the sky and saw those trees you see above and blue. When I got home I opened an email from the people who are managing the wheelchair issue that I've alluded to in previous posts. The woman who wrote it, Anna, has been very helpful, and her last name reminds me of something Bohemian. What she wrote was as illuminating as any poetry which means light through cracks and all that.


Monday, September 8, 2014

Today in 1504, 1952, 2014 and possibly the future if you help support H.R. 5226***



Michelangelo unveiled his sculpture David on this day in 1504, and Ernest Hemingway published his novel Old Man and the Sea in 1952 after a twelve year dry spell.

Sigh.

On this day in 2014, I did a lot of driving around, had lunch with two friends, tried to make sense of the thirteen denials from Medi-Cal and tried to figure out what I do next about Sophie's wheelchair. I also made an initial foray into getting in touch with Congressman Henry Waxman of California who I want to co-sponsor a bill (HR5226)*** in Congress that will enable high CBD (hemp) products to be shipped anywhere in the United States so that children and young adults with epilepsy might try it and see whether it provides relief for their refractory seizures.

That basically brings us back to David, no? And Goliath?











***H.R. 5226 is the Charlotte's Web Medical Hemp Act of 2014. The sponsor is Republican Representative Scott Perry of Pennsylvania. I am one of the California "point people," for this initiative, helping to get important congressman to be co-sponsors. I have a lot of information about this and am happy to share. Please email me or I will try to summarize in a post a little later this week.

Good Fortune



I love a good fortune -- you know, something about the future and not one of those wise sayings like you are full of integrity and joy, a pleasure to behold. I got the above one in my fortune cookie last night, so I'm waiting here for any day. I sure hope the thirteen separate notices of action that I got yesterday from Medi-Cal, denying all the components of Sophie's wheelchair (and each notice of action was accompanied by a State Hearing Request Form in a separate envelope and each envelope had a $.44 stamp on it, which means there were 26 sheets of paper, thirteen envelopes and $5.72 of postage) won't become my "good news," when we finally get that wheelchair (and we will get it in this lifetime, I imagine). I'd prefer a book deal, a windfall or instant fitness.

It actually rained here a bit this morning as I was driving home in the wee hours from Henry's school. The drops were plops, really -- the fall more pathetic than robust, but, hell, it's a start! Good fortune for the earth in southern California.

Good fortune to you today, too!

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