Wednesday, October 22, 2014

Cannabis Oil Update -- A Boulder on the Path

As the world shifts its attention from Ebola and reels from the news that another Hollywood celebrity has chosen to butcher her original face for a new one, those of us in the medical marijuana community got a sad email and update from Realm of Caring who had been in the process of removing people off of its many thousands waitlist with the intention of shipping them Charlotte's Web  Hemp Oil. Here's the gist of the email:

Unfortunately, despite the fact that the U.S. imports more hemp foods than any other country, the common association of CBD with high THC cannabis has caused more scrutiny for these hemp products than expected. For example a Minnesota mother may be facing charges for possessing a CBD product which she obtained for her son. Such tragic events, combined with the ever changing legal landscape of hemp/CBD products, have forced us to reconsider all potential ramifications of our previous distribution plans. Simply put: the last thing we want to do is put the families we serve in jeopardy.

As a result, at the strong advice of our legal counsel, we have decided it is in the best interest of both present and future clients, as well as the longevity of the ROC program as a whole, that we hold our distribution plan to higher standards than the conventional hemp industry.

We sincerely apologize to those of you who will be most affected by these changes. We ask for your patience, understanding, and help as we work to educate and comply with federal agencies and to change the laws which block people from safe access to products like Charlotte’s Web. Please know that we are doing everything we can under the circumstances to help as many people as possible.

In a nutshell, even by classifying the high CBD product as hemp, the Stanley Brothers and Realm of Caring are concerned about the risks people who acquire the oil for their children might have in those states that don't have laws like California's and Colorado's. To protect them from possible prosecution, they state that they will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. I know many people who were so excited, so uplifted by the prospect of finally getting Charlotte's Web. They have children with epilepsy -- children who have all had uncontrolled epilepsy despite numerous medications and treatments over many years. These are children like Sophie who went nineteen years without significant respite from seizures and the side effects of 22 medications until she tried Charlotte's Web.

This is a complex issue, and I've felt uncomfortable at some of the infighting that sometimes occludes what this whole thing is really about -- our children's quality of life and ability to live to their full potential. I couldn't begin to explain it all here on this blog. The people at Realm of Caring and elsewhere are working incredibly hard to advocate on so many levels, and I am holding my breath that change will come sooner rather than later.

In the meantime, I hope you'll educate yourself about this issue. Here's a great PDF file (I think you can access it, but if not, go to the Realm of Caring website for more information) to read more information about this latest development. Put pressure on your legislators, put pressure on the federal government to help make these changes. It's absolutely critical.

And here's a great story that appears in Time Magazine.

SIG Alert

SIG Alert:

any unplanned event that causes the closing of one lane of traffic for 30 minutes or more

defined by California Highway Patrol and originated in 1955
by Lloyd "Sig" Sigmon

This morning, when it was still dark outside, I texted a friend that I'd be looking for signs today. I didn't mean street signs, but real signs that everything was going to be ok. Then I put on my red dress (see yesterday's post) and got out of bed to fix Henry's breakfast and drive him and the rest of the carpool to school. It's quite a haul to Henry's school -- probably only five or so miles that can take anywhere from twenty minutes to hours, if there's a problem on the 101N. This morning, there was a problem on the 101S, though, which meant my ride home was going to take a looooooooooong time.

Was this my sign?

I surrender to traffic, to tell you the truth (but do complain about it a lot). It doesn't make me angry as much as it makes me feel entirely weak, whimpery and ineffectual. At best, my mind wanders into the realm of -- well -- I don't know where it wanders. I think of nothing. You won't find me in a state of road rage other than an occasional derisional word I'll direct toward the weaving BMW driver (why, why do all BMW drivers act so cocky?), and this morning was no different. Once I heard on the radio the dreaded SIG Alert words, I decided that I'd take Ventura Blvd home and listen to Mary Shelley's Frankenstein, but since everything today was going to be significant, a sign, I felt repelled by the reader's placid English voice and realized that I didn't want to think about horror and the creations we've wrought on this earth (because everything just is) even as brilliant metaphor. I pulled into a Jon's parking lot to download some Pema Chodron. Her name popped into my head, so I took that as a sign. I thought I had chosen a book, but it turned out to be a seminar that she taught, and my mind wandered to the sound of her sweet voice and gentle laugh as I meandered down Ventura and then into Hollywood. 

Be compassionate and kind toward all beings and particularly yourself, Pema said. I closed off that line of traffic in my head that's bogged down, stuck and afraid, and felt my heart open up right there in my red dress in my sexy white Mazda on Ventura Blvd. 

Tuesday, October 21, 2014


The Cure

Lying around all day
with some strange new deep blue
weekend funk, I'm not really asleep
when my sister calls
to say she's just hung up
from talking with Aunt Bertha
who is 89 and ill but managing
to take care of Uncle Frank
who is completely bed ridden.
Aunt Bert says
it's snowing there in Arkansas,
on Catfish Lane, and she hasn't been
able to walk out to their mailbox.
She's been suffering
from a bad case of the mulleygrubs.
The cure for the mulleygrubs,
she tells my sister,
is to get up and bake a cake.
If that doesn't do it, put on a red dress.

Ginger Andrews

Monday, October 20, 2014

Fragmented Iconoclast

Weird, right? These new phones are a marvel. I am not an iPhone lady, but I am a Samsung Galaxy lady, and Oliver showed me how to turn a plain old photo into a stylized creation. I don't know what you call this, and it's not even an app, but the possibilities are endless, and I wasted a good bit of time twiddling around with different settings today. Maybe it wasn't really wasted time, though. I also taught Oliver about grammar (subjects and predicates), read him some history (the relationship between women fighting for their rights in the eighteenth century with the abolitionists) and listened to some Johnny Tremain, as we drove around the city. Yeah, remember old Johnny Tremain? I read it in eighth grade, too, and while I didn't exactly love it, I remember it, and there's comfort for both Oliver and me that he's reading something at "grade level," for what that's worth. This homeschool thing is a lark most of the time -- I wish everyone would take a jab at it and help me to dispel some of the illusions about it -- or delusions that you have to spend $40,000 a year for your kid to learn. But back to the wasting of time (not money). I confess to being bored out of my mind whenever I see one of those posts or news clips about how technology is killing our children or how we're being sucked into the internets, forswearing all social connections. Or the end of books or film or Buffalo sandals and appropriate underwear. I'm sure there are plenty of folks out there who have troubles with monitoring their screen usage (and I'm not above yelling at Henry, in particular, to put that thing down!). just as there are those that watch too much porn or drink too many glasses of wine or smoke too much pot, but let's face it. The things are here to stay, and rather than freaking out about them or instituting those unplugged rules, why doesn't everyone just relax? I have this theory that as technology pioneers, we are really just caught in the slipstream of where we're going. Does that make sense? We can't see that far ahead.

What Are You Doing This Thursday Evening?

Los Angeles! Come to our Shebooks Shebang! 
This Thursday. 
Shebooks Party and Reading

October 23

7:30 - 10 pm

Admission: $5

Center for the Arts, Eagle Rock
2225 Colorado Boulevard
Los Angeles, CA 90041

The night will feature drinks, music and readings from Shebooks authors:

Elizabeth Aquino
Denise Emanuel Clemen
Laura Fraser
Mona Gable
Zoe Rosenfeld

Sunday, October 19, 2014

Shooting into the light

That time we lived in the old evangelical church with the full-immersion baptismal font right in the middle of the living room. Was there a painting on it, some fake tile or the rivers of Babylon? The altar was a kitchen, but we rarely cooked, and the only thing I remember is a microwave dinging when your spinach from the can warmed through, a pale slice of cheese melted on top. I think there was an old television, but we didn't have cable, and besides for Jeopardy and Star Trek, it was never turned on. The front doors -- it was a church -- opened to a vestibule and off that was an office where your shuffle was silenced by fake fur on the floor and all four walls. Or was it brown shag carpeting? You took your spinach in there and wrote on some giant early computer. It's funny, but I don't remember the bathroom at all. I think it was off the closet which was big for closets. I lined up my business clothes along the back wall, my pumps below. The bedroom was right there, to the left, the bed a boat where we drifted in and out with the tides. The back door, too. I think it was off  the bathroom that I can't remember, and just across the cement path, where those Laotians with the beautiful babies lived in a concrete outer house, the smells of something cooking that didn't seem right.

Saturday, October 18, 2014


Of all the photos I took tonight of Henry and his beautiful date to the homecoming dance, I think this was my favorite. There's a story behind it about last minute hysteria, white shirts that were too small, a neighbor jumping in to give him another one, its starched cuffs and cufflinks (new to Henry), and  the white wrist corsage for his date in a plastic box. I looked at that boy there and practically burst with love for him -- not because he's so damn good-looking but because he's so all grown up and beautiful yet still my little Henry-boy.

Saturday Three-Line Movie Review

Gone Girl

I confess that I'm one of the few people in the universe that didn't unequivocally love the book (but rather thought it was one of the more hateful things I'd read in years) and had no intention of seeing the movie, but I was persuaded to do so when the alternatives were to attend a high school football game, hang out in the Valley or watch Dracula: The Truth Untold, so you can imagine my desperation and low expectations. Despite the visual candy that is Ben Affleck and Rosamund Pike, I maintain that just like the novel, the movie is a slick and soul-less creation with no sympathetic characters that made me long for the halycon days of real thrillers and intimate portraits of marriage and lust, not to mention a hot shower. When my children texted me about two hours in that the football game had ended, I gratefully clambered over the rapt audience and left the theater, missing not only Ben Affleck's supposedly glorious netherparts, but also, evidently, and as usual for me, the depressing cultural zeitgeist in this, the two thousand and fifteenth year of our lord.

More 3-Line Movie Reviews

Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Friday, October 17, 2014

Go Whoopie, Paige Figi and Joel Stanley!

Watch the link from this morning's The View, here.

What can you do to help us? ABC wasn't allowed to talk about "the politics," of medical marijuana, but many of us are working hard to get a bill passed in the United States Congress. Titled HR5226, the bill amends the Controlled Substances Act to exclude therapeutic hemp and cannabidiol from the definition of marijuana. The bill does not impose additional restrictions on those states who have already legislated the use of cannabis and is an incremental approach to provide relief to those suffering from ailments and diseases that could benefit from CBD oil and therapeutic hemp like epilepsy, severe seizure disorders and other neurological impairments.

By moving the non-psychoactive supplements into a separate category, this bill will not only provide quicker access to patients, but will allow these safe supplements to be produced on a mass scale under agricultural regulations while keeping the price affordable for patients.

It simply makes no sense to keep these products, which have no potential for abuse, lumped in with psychoactive compounds that are, and likely will be for a long time if not forever, strictly regulated.

You can write your congressman or woman and ask them to support HR 5226 -- The Charlotte's Web Medical Hemp Act 2014.

From a California mother and advocate:

This is what prompted HB105. We recognized the many needs beyond epilepsy. We did our best. Our best made us the first state in the country to pass this type of hemp bill. Now, we're asking the US to do the same via HR5226. Both Congressman Stewart and Bishop have co-sponsored along with some 30+ other Congressmen. Send a respectful email to your Congressman asking him or her to co-sponsor HR5226.
The bill is brilliant. All the it does is separate the definition of hemp from marijuana based on THC levels and removes CBD, a natural derivative of the cannabis plant which doesn't produce a high, removes both from scheduled drugs.

Thursday, October 16, 2014

Around whom I spin

I've been worried about Sophie lately. Maybe the word lately is superfluous. I have worried about Sophie and worry about Sophie perhaps all the time, but lately I've been worried about Sophie. She has some strange behaviors that are subtly different than any she's had before. She rotates her right ankle a lot, almost collapses it onto its side. She contracts her right arm a lot, too, and flings out her right leg. She seems uncomfortable or maybe not. I don't really know what she's feeling. She has less seizures of course, because of the Charlotte's Web, but we're still waiting to get the higher ratio oil that really stops them. Until then, we've compromised and are not weaning any more Onfi. She goes on liquid fasts periodically now and just refuses to drink. I don't know what that's all about, so I basically force it into her -- take the little plastic thing that makes it a sippee cup out of the lid and tilt it into her mouth. She is very resistant to a lot of things and only seems happy and content when she's in her room, alone. She lies on her bed or sits cross-legged on the floor and fiddles with beads and baby toys. Don't tell me that this is what teenagers do, because it's not. I think, at best, that her brain is not so preoccupied with seizures so she's more aware of her surroundings, and the sensory input might be almost too much for her. She might be blocking it out, stilling the chaos. Again, I have no idea. When she arches her back and refuses to sit in a chair, I wonder if she's in pain or whether she's developing behavior problems. I hate this kind of worrying. I've said it before. It's the little things, sometimes, that do me in, make me crazy. If I ever do run away to Bora Bora, it won't be because of Sophie's epilepsy or the fact that she will never be normal. It will be something simple that breaks me, a link on my twenty year old tale that like a Christmas light on a string just goes out and brings down the whole strand.

Today, though, it was a little thing that made Bora Bora just another island in the South Pacific. Sophie's teacher sent me that photo, with this text:

Nice time for Sophie during the earthquake drill. Nice, soft turf and soil. She got to walk without physical support in the sunshine for a while. Of course I was right there. But I couldn't resist the urge to snap a happy picture of her in a rare moment of liberation.

Stuff like that makes me want to stick around. I am going to face it. She is the person around whom I spin.

Angry Yoga and Unexpected Salvation

Thank you, dear Michelle.

Wednesday, October 15, 2014

High Time, About Time, Good Time

The Shepard Fairey mural at the end of the Trader Joe's Alley
La Brea and 2nd

Sophie's wheelchair approval went through, and the chariot has been ordered. Since it began its journey to us back in April, I have no idea when it'll land, but hopefully before Sophie demands some new and more exotic transport.

It's high time.

We're still waiting on paperwork for the ambulatory EEG, and I'd be lying if I told you that I haven't put much effort into making that happen because -- well -- I'm tired of doing it.

Good time.

Right now, I'm patiently coaxing fluids into Sophie as she is on some sort of liquid fast. I have no idea what that's all about, would like to imagine she's protesting some injustice somewhere in the world, but in the meantime, you do what you have to do. That means lying on my side and putting the sippee cup to her lips every ten seconds and then pulling it away before she throws it away.

If I did, it'd be a good time for a high time.

Reader, how was your day?

Mexican House Envy

via AD

You'll find me here today.

It's part of my news black-out as of 9:23 am, Pacific Time.

At least in my mind.

Tuesday, October 14, 2014

Broccoli and Autism and Seizures, Oh My

Carlsbad, CA 1997

Sulforaphane is believed to prompt a cellular stress response in the body much like a fever does when a person is ill. Researchers said they were inspired to try the treatment after hearing anecdotally from families that fevers seemed to trigger improvements in autism symptoms.“We believe that this may be preliminary evidence for the first treatment for autism that improves symptoms by apparently correcting some of the underlying cellular problems,” said Paul Talalay of Johns Hopkins University School of Medicine, a co-author of the study.

That quote is lifted out of an article that I read today with the title Autism Symptoms Eased By Broccoli Extract, Study Finds. Despite reading it on my Disability Scoop digest, I almost thought it to be a joke, but I clicked anyway and was blown away, especially by the sentences I've highlighted about high fevers. I have probably written about it here before, but in case I haven't, Sophie has always had a near-complete cessation of seizures during periods of high fever. In the days leading up to illness, she might have increased seizure activity, but once the fever begins, they nearly always have stopped. She doesn't really get sick like that anymore, though, so I'd forgotten about it. I do remember that we'd joke about instigating a treatment of provoked fever as an anti-epileptic. She is markedly calmer and more relaxed then, too, and while we've always attributed that to fatigue or a symptom of the fever/illness itself, the cessation of seizures (as opposed to exacerbation, like most people with epilepsy) is remarkable. No one has ever responded to that observation, though -- at least not her doctors.


I have also heard of the improvement in behaviors that some people with severe autism experience during fever, and I know that while Sophie has never been technically diagnosed with autism, the two diseases share many characteristics and many people with autism will also experience seizures at some point in their life. Anyway, this article is fascinating, and I'm thinking about finding some broccoli extract and adding that to The Regime.

Here's the link.


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