Crowd-Sourcing with My Peeps with an Update

I'm working on an exciting new project that has the potential to be a game changer and really help caregivers of children with special healthcare needs and disabilities. I need your help.

I'm compiling a list of people in the Caregiver/Special Needs Healthcare/Disability Community and would love your suggestions.

Here are the categories:

1. Real Parents (like yourselves or people you know)
2. Creative people who are also parents or involved with caregiving
3. Famous people: celebrities, writers, etc.
4. CEOs 
5. Organization Leaders that are also parents
6. Big Foundation execs
7. State and Federal Special Education Leaders

You don't have to know these people personally, although if you do, that's great (and I'll contact you separately to get more info) -- just know of them. I need names. If you could sit and really think about this, jot down names and either contact information or titles, I would really appreciate your list. If you're one of these people, please let me know!

I appreciate it and look forward to your lists!

**Please email me your lists if you don't want them "public." If you do have ideas on people, that's fine to leave their names right in the comments. My email is elsophie@gmail.com

Meditation on New Language

I need a new language to express my feelings when I read headlines like this on respected medical websites:

Surgery in Drug-Resistant Children? It's Worth It!

I imagine a group of marketers and branders, the people a medical consortium has hired to spice up language, maybe make it more upbeat or appealing in the way that television ads for drugs show people running through fields of flowers even as a litany of side effects are listed. Perhaps these people -- the ones in the rooms brainstorming, the editors of medical websites -- not the ones running through fields or having seizures or being constipated -- are the same experts who come up with pharmaceutical drug names -- Lyrica to conjure soothing musical notes instead of addiction or constant diarrhea or Banzel with its suggestion of a premier fashion house for accessories instead of an antiepileptic whose side effects include increased seizures and psychotic behavior. How about Fycompa with that tiny little nod to coma, like Fie On That Seizure-Induced Coma! Its side effects include increasing belligerent behavior and aggression, even homicidal ideation.

There's the language assigned to pharmaceutical side effects: irritability for psychotic, behavioral disturbances for head-banging or clawing one's skin to blood, increased secretions for drooling cups of liquid, and insomnia for never sleeping again.

Drug-resistant children is a phrase that implicates the child, doesn't it? It smoothes out the anxiety and insanity inherent and provoked by an inefficient treatment. It's language that covers for hideous drugs that don't work for shit to control seizures in children.

The degradation of language.

No more plums in the icebox. This is just to say.

How casual it all sounds, in this, arguably, well-intended iteration.

Brian Surgery!

It’s worth it!

There shouldn't be exclamation marks after brain surgery but rather a new sign from a new language that amplifies cutting into the brain of your child and removing a part of it, her, him, they.

Actually, I don’t need a new language to describe my feelings. You can probably surmise them. No probably. You surmise them. Your gift for recognizing irony is intact, Reader, if you’ve been coming here a while.  

We need a new language to discuss these medical things.  

We need a new language to express things like brain surgery for children — a language that could encompass possibility, gravity, and hope but also fuckery and absurdity. 

Also, specificity.

The possibility, gravity, fuckery, absurdity and hope of brain surgery.

so much depends upon a red wheel

barrow glazed with rain water beside the

white chickens

William Carlos Williams

Baking Cakes

No, I'm not advocating bomb-making, but I can make a cake.

Flourless Chocolate Cake for Everyone Needs Cake™

As for bombs, I can throw around the f-ones, particularly in these dark times. I found this article really illuminating. It sheds light on anger, my own in particular.

I used to insist I didn't get angry. Not anymore. On female rage.

Here's a favorite paragraph with words attributed to Audre Lord:

Anger isn’t just a blaze burning structures to the ground; it also casts a glow, generates heat and brings bodies into communion. “Every woman has a well-stocked arsenal of anger potentially useful against those oppressions,” Lorde writes, “which brought that anger into being.

If you're Homeland Security, be assured. I might be an angry woman (at times), but I'm not making any bombs.

Did ya'll go to the Women's Marches in your city? I didn't go this year because my little sister and her daughter were visiting, and -- to tell you the truth -- just wanted to be quiet. I'm so moved by the numbers of people who showed up, though, all over the world. It gives one hope, right?

Here's one of my favorite posters:

Last week I interviewed the founder of the Pussy Hat Project, Kat Coyle. She's the owner of The Little Knittery, a much-loved community knitting store. I'm writing an article about it for The Los Angeles Times. Stay tuned.

I bought a skein of pink wool to make another pussy hat.
Kat is the one knitting in the background. She's so cool I can hardly stand it.

This is over the door of her new store -- so weird and wonderful how women make history.

Yeah. It's been a wonderful weekend.

Playing Chicken Feet dominoes. I won.

VNS: Very Nerve-Wracking Shit or Virtually No Science*

Blind belief in authority is the greatest enemy of truth.

Albert Einstein

Back in the dark days of the last century -- let's say, 1999.

Sophie attended a wonderful preschool over at UCLA. There were two kids in her class who also suffered from refractory seizures. The two kids were just a couple of years older than Sophie, and their mamas were rocking brave and powerful. When they heard about a new medical implant device called the Vagal Nerve Stimulator, or VNS, they researched it and talked to their neurologists about it and ended up flying to Ohio, I recall, where the company that had created the device, Cyberonics, was implanting it. I remember that not many children had gotten the device yet, but it looked promising, and we in the Refractory Epilepsy World were  quite used to having treatments thrown at us that were, if not experimental, than approved for use in adults or whose mechanism of action is unknown. I'm only telling you this part because I want you to know how long I've known about the VNS -- since its earliest use, even -- and how this whole thing that we call the treatment of refractory epilepsy works.

We are strong and brave and desperate people.

I learned over the years that while the VNS could be helpful, the efficacy rate wasn't that great (the usual 33% noting "improvement" statistic) and, combined with the possible side effects, I never felt any compelling reason to try it on Sophie. I think I was quite sick of the whole shebang by the time it came around, but not quite at the point where I vowed to never try a new drug unless Jesus Christ offered it to me.  I never had a good feeling about the device, never really spoke to anyone who had gotten it (and I knew A LOT of people who got it) and was glad to have done so. I was probably also overwhelmed and lazy about it, too. I heard some horror stories, but there are horror stories for literally every single epilepsy treatment, including the ketogenic diet (which was a horror story for us, too).

Oh, wait.

There is one epilepsy treatment that I've never heard a horror story about, and that's cannabis, but that's another post.

Not a single neurology appointment passed without mention of the VNS. I'm dead serious. I laughed off or declined the VNS suggestion every single time it was trundled out by both beloved and barely tolerated neurologists over the twenty or so years that device had been around. Most recently, I learned that Sophie's old neurologist, whom I used to call The Neurologist before I fired her, has been paid by the company that manufactures the VNS which was an explanation, I guess, for why she suggested it in every single appointment we had with her. Honestly, if you go over to the right side bar and search for the VNS, it'll come up numerous times as part of my conversation with The Neurologist.

These folks are throwing darts.

Try this.

Try this.

Try this.

Where am I headed?

I was also going to tell you about my oft-irrational but actually hard-won and some would say earned distrust of the Medical Industry (emphasis on the word industry, so don't jump in here with your exclamations of all the good and wonderful caregivers in the medical world), particularly when it comes to the authority of the CDC, the almighty FDA and other Powers That Be. I had a bit of a tiff over on Facebook (like a fly to shit) about the flu vaccine. I object to the mainstream media pushing vaccination policy as a morality play. You know what I'm talking about, and I'm not going to belabor it here. Some woman with whom I was engaged in this ridiculous Facebook discussion finally had the last word with a patronizing Okey Dokey, and I let it go. Because, you know, Science is infallible and The Powers That Be are to be trusted, and if you don't you're anti-science and a crazy person.

Wait. Where was I headed? I'm off track.

So, this is where I was headed:

Are Implanted Medical Devices Creating 'A Danger Within Us'?

If you can't listen to the whole segment, read or at least skim the transcript because it's mind-blowing.

Especially the VNS and epilepsy part.











* or the Vagal Nerve Stimulator

Re-Cap

I sort of panicked when I logged in to the old blog and saw that I hadn't written a post in over a week. I don't know what's happening to me, but I'm finding it difficult to get the words down and out. I feel a sort of pressure to write well here -- to write something meaningful, to exercise the muscle for the offline writing, but that takes so much out of me. I used to come here and just gab on some days, and I kind of miss that. Do you? I feel that we have a whole lot of gab to deal with nearly every single moment in the clusterfuck that is our country right now. Why should I add to it?

Here's some gab: Henry was home for nearly a month and is already gone and back to college. It was wonderful to have him home and weird, to tell you the truth. It was like he never left. The fighting with his brother, the piles of clothes on his floor, the empty cereal bowls and crusty spoons left out, the boxers on the floor of the bathroom -- shall I go on? But left he did indeed -- back in August and now again, last week. I actually remember what that experience was like -- to leave for college and then to come home. To have your parents still -- your parents. I cringe at how I probably was insufferable then. Not that Henry was insufferable -- to the contrary. There's a certain amount of angst, though, that comes with the age. We live in weird times and seem so much closer to our children than we were with our own parents. At least I think.

In other news, I did a reading on Sunday with a couple of dear writer friends. We were part of Diane McDaniel's Backyard Literary Salon and read from works-in-progress. I had done a podcast with Diane a few months ago, and she invited the incomparable Chris Rice and Tanya Ward Goodman (who also did podcasts with Diane) to read, too, along with her own writing. We had a really great turn-out of about sixty people, got over our jitters and stood up there and rocked it. I think the others would agree that it was glorious. There's something awesome about expressing yourself in amazing company -- I felt galvanized to keep at it -- to finish up MGDB*.

I so rarely like to post photos of myself all alone, but the inimitable Carl Jackson, Bird Photographer Extraordinaire and love of my life (!) took these and I actually like them. I'm trying to shed some vanity in 2018 and get over my snaggle tooth, my chins and roundnesses. I'm trying to consume less and create more.

Hold me to it.

*My Goddamn Book

Tiny Little Mother MInd™ Report

Sophie walked down the street today -- nearly the whole block -- and back to our house, leaning only lightly on my arm. She hasn't walked that far in months, and I'm going to say that it's because she has been taking CBDA for over a month (since her last hospitalization), and I've reduced her Onfi again. She's now down about 50% from the amount she was taking last year at this time, and we're going to keep on going.

The backdrop to this is, of course, the recent roll-back of Obama-era marijuana rules, a "return to the rule of law" according to Attorney General of the Disunited States of America Jeff Sessions who is, in my tiny little mother mind,™ one of the biggest PsOS now running the country. He is correct that the federal rule of law maintains that marijuana is classified as a Schedule 1 substance and is of no medicinal benefit with that designation. Reader, I'm not going to write about this all over again. You can put medical marijuana or cannabis into the search engine over there on my righthand side-bar and pull up dozens of posts that I've written over the last five years or so.

What I am going to tell you about tonight is the SIT-U-AH-SI-ON we here in California face now that our state has passed a bill legalizing recreational marijuana.

Check this out:

Here's the thing. Sophie's medicine will be taxed at 34.5%. We will save 9.5% in taxes on her medicine if we make a trip to the Medical Marijuana Program in Baldwin Park, CA to get her a Medical Marijuana Identification Card (as opposed to just the regular doctor's recommendation), but we'll still be paying a 20% tax on her medicine each time we make a purchase. To put that into perspective, consider that the pharmaceuticals that have poisoned her for more than two decades are tax-free purchases. With legalization in California, cannabis is now subject to so many regulations involving licensing and shipping that we're sort of scrambling with shortages and access to products.

What does this mean? I imagine you're wondering, isn't making marijuana legal a good thing? Isn't that what we've been fighting for and working our asses off to get? Won't it be a wonderful thing to fill up the California coffers with cash?

Sigh.

Honestly, I don't think the California legislators or the general population that voted to make recreational marijuana legal give a flying foo-foo about cannabis as medicine. I imagine that most don't even believe the claims of medical cannabis patients or even experts. I had sort of a PTSD response to that tax chart the other day, when Dr. Bonni showed it to me. It reminded me of this drug Sophie was on back in the clueless days of the 20th century when I was desperate enough to try anything that The Neurologists suggested. The drug was called Topamax, approved for migraines in adult patients in late 1996,  but we gave it a whirl. Sophie quickly became, literally, anorexic as well as that neurologist-generated euphemism called irritable (meaning psychotic screaming all hours of the day). I'm only telling you this story because I can't tell you how many times I heard about people with migraines using it successfully and staying on it for extended periods of time because they loved the weight loss factor! Maybe only the seizure folks out there reading this will get what I'm saying, understand why I kind of broke out into a sweat when I looked at that tax chart. The tiny little mother mind™ is disturbed as well that after giving one mighty fine speech last night at an awards show, Oprah Winfrey is being extolled as a presidential contender.

Holy moley. This is where we are now?

Many do care, I guess, about cannabis medicine being affordable and accessible to everyone, but many don't. I imagine those legislators, with a few exceptions, just buckled to the Powers That Be, with dollar signs lighting their asses, and that's not a cynical thought. It's borne of experience. The whole shebang is a clusterfuck of gargantuan proportion.

Honestly, my tiny little mother mind™ is stumped.

Anger and Scythes

Illustrator Micah Caudle, seen on Pediatric Cannabis Support

I'm no stranger to anger and have perfected the art of the Tongue Scythe over a lifetime and particularly during the last 23 years.  During this time of Terrible America,* when dinosaurs run shit, as my friend Allison Ray Benavides noted today, my anger, exhausting itself, is inexhaustible.

Attorney General Jeff Sessions announced today that he would be rolling back the Obama Administration's "hands-off" marijuana federal guidelines. You can read about it anywhere on the internets, and the good jesus lord knows I've talked enough about cannabis medicine for the past five years that even the tiniest of your tiny little mother minds™ knows that it's a plant that not only improves lives but also saves lives. You also know that many of us have been working our asses off as activists to make this medicine accessible to everyone in this country, that we've been fighting ignorance and stupidity and greed and power and have made incredible progress. 

Jefferson Beauregard Sessions, a dripping moniker for a man who I could cut to pieces with my tongue.

Cue anger and the scythe.





We can all sit around and throw out the reasons why the AG has made this announcement today:

1. Jeff Sessions is a racist who has a vested interest in the Profit Prison business. Generations of men -- primarily African-American -- are incarcerated in these prisons.
2. Big Pharma wanting the whole damn pie, working their tentacles around literally every single aspect of the cannabis industry, including the government
3. Jeff Sessions is a willfully ignorant fool who has never bothered to read anything of scientific value about cannabis, is unaware still that cannabis is not a gateway drug and has no interest in the lives of tens of thousands of people who are helped by it as medicine
4. It's a great diversion from the other shit going down
5. It's a great way to make the big liberal states squirm

but it's probably much simpler than any conspiracy theory. Jeff Sessions and the POSPOTUS and the majority of the Republican party are hell-bent on undoing everything that the Obama administration did just because they can. 

Where does it end? When does it stop?  I'm going to keep raising my voice in anger and frustration but also with honesty and truth and compassion. I'm raising my voice in anger against the lying, greedy motherfuckers who are running this country into the ground and against those who support them, even still.

You know who you are.

Shame on you.


#RESIST

* The name Terrible America is the poet Rebecca Loudon's genius

Bring it On

Happy New Year, stalwart Readers!

It's as good a day as any to post a couple photos of Sophie, the source, the inspiration, for so much of my years, my art, my life.

I hesitate -- as always -- to jinx it, for isn't it the height of egotism to imagine that we have any hand beyond the obvious in the course of events even as we emphatically insist that we do?

Sophie is well. She hasn't had any seizures to speak of since we got back from the hospital. She's incredibly alert and responsive, although she still can't walk well and has lost a lot of her motor (both fine and gross) planning abilities. There's no miracle here, I don't imagine, or even conspiracies of the gods. There is the reduction of Onfi that I began again the day after we got back from the hospital, and a resolve on my part that is quite literally pulled up out of the deepest and darkest recesses of my being where fear masks mystery. There is the addition of CBDA that Dr. Bonni suggested* when I appealed to her to help, again. And again she helped and I leapt into the unknown and it seems that Sophie is responding to the cannabinoid.

What is CBDA? Cannabidiolic acid is a chemical compound found in the resin glands, or trichomes, of raw cannabis plants. "Raw" means unheated and untreated. It is fresh flower and leaves taken directly from the plant. It's the precursor to CBD. Sophie takes it in tincture form, a tiny, tiny amount, along with the CBD and ACDC that is part of her daily cannabis medicine regime.

This is what Dr. Bonni told me:

There are only a few studies of CBDA and of course none in humans (seriously, this has got to change), but it appears to be a "key" for the 5-HT1A receptor, one of our serotonin receptors. Studies show potent anti-inflammatory effects by blocking COX-2 enzyme that produces inflammatory compounds and anti-nausea/vomiting effects through 5-HT1A receptor. CBDA also blocked a certain breast cancer cell from migrating by blocking chemical signals sent by the cancer cells. Interestingly, the 5-HT1A receptor when stimulated can affect the vagus nerve. Maybe it is working for seizures as a natural vagal stimulator? Based on what we know 5-HT1A receptors do, CBDA as an activator of this receptor, should be anti-anxiety, anti-depressant, reduce fatigue, decrease appetite, decrease blood pressure and more -- maybe we all need to juice this plant with our kale!

I don't know about ya'll, but I'm going to consume less in 2018 and create more. I hope to be more patient with darkness, to not despair and be more grateful for light, not take it for granted because both are ephemeral.

Bring on 2018, Readers!

Happy New Year!












* If you haven't yet, order Dr. Bonni Goldstein's book Cannabis Revealed. It's an excellent resource for all things related to cannabis medicine. Disclosure: I get a small percentage of the proceeds as I helped Dr. Bonni with the stories of her patients.