Where is Jesus?

I haven't written in this space in more than a week, and the last thing I wrote was just fluff, just superficial bullshit, just aggravating minor bad luck goofy stuff that's a mask, all resolved now. I'm walking around doing laundry, taking care of Sophie, exchanging texts with my favorite sacrilegious caregiver friend, feeling solidarity and shedding tears with and for another caregiver friend, Christy Shake, whose most recent post might have ripped my heart out of my body but instead provoked its beating a little harder a little faster. We are ALIVE. I love you, Christy. Who is Calvin and who is Sophie?Who are we without these cares? Must we define ourselves by care? Who are we at all?

Where is Jesus?

Shouldn't he have shown up by now and cleared the tables in Washington, D.C., kicked them over and thrown those who claim to believe in him out on their privileged, hypocritical, stupid, vision-less asses? Shouldn't that POSPOTUS be punished by now, disgraced and bound in a public stockade?  Why is that man from Georgia so hell-bent on power that he's denying suffrage to tens of thousands of people? Is he afraid of the black woman that he is running against? Why are Georgians not ashamed? Are they punch (or should I say beer) drunk on power? I am ashamed that I pass countless homeless persons on every single corner of this great city. I pass them by. Why have the Koch brothers spent so much money on propaganda against climate change? What are these sacrosanct values that conservative peoples espouse? Why do so many people bear arms? The man in the park in Sedona last week, pushing his mother in a wheelchair to an overlook, the rushing water below, the sky blue above, a large gun strapped to his thigh. Did he feel safer? Freer? He made me sick. Why exactly is the POSPOTUS administration now going to "erase" transgendered people? Define humanity by their genitals at birth? Who will be next?

Will we have to fight? Parents against their grown children. Cousins estranged. Friendships severed. And anger, so much anger, and it won't be squelched.

No stranger to the catastrophizing that comes with great stress (I step over a curb and imagine my body flung by passing traffic, the descent into the red rock canyon surely must be swift), I am yet dazed, struck dumb, bewildered.

I am furious.

“I have been beaten, my skull fractured, and arrested more than forty times so that each and every person has the right to register and vote. Friends of mine gave their lives. Do your part. Get out there and vote like you’ve never voted before.”

—Congressman John Lewis

What We Do - A CBD Update and Some Truth-Telling

Fortune-teller, 1870s

You haven't heard much from me about CBD or anything, really, that's cannabis-related. Part of the reason for that is that Sophie is stable, doing quite well with a mixture of THC and CBD. I follow the news about the industry only rarely because it kind of, sort of, grosses me out. The grossing out is because most coverage is about money these days -- how people are making it hand over fist, how the industry is about to explode. I do worry every now and then that Big Pharma will eventually get their hands on literally everything related to cannabis and make it difficult for those who want and need to make their own whole plant medicine. I've stopped "caring" about the obduracy of the medical world and the labyrinthine clinical trials. It bugs me that you can convince people that it's wise to legalize marijuana because there's money to be made. I'm deeply disturbed by how messed up it is that many generations of young black men have been incarcerated for possession of marijuana and have no place in the new marijuana economy that is making untold numbers of white people very, very rich. I don't even need to type it all out. I'm repulsed by the notion of Marijuana Capitalism, but what can you do? It's the way of the world.

I'm a bit of a rebel but under no illusion that my tiny little voice is anything but inexhaustible.

I'm not a cynic, either -- at least not all the time.

What I can do is continue to answer the emails and telephone calls and texts that I get several times a week from people needing advice or encouragement or referrals. That's what I do. Not long ago, a woman contacted me about her son, a young adult who was having terrible seizures that were wreaking havoc with his life and his future. She had read my blog, felt a kindred spirit and needed encouragement. I emailed with her and spoke on the phone. I told her our story and encouraged her to contact my friend Christy Shake who makes THCa at home for her son Calvin. I told her she had nothing to lose and should blow off her doctor's caution. Today, I got an email from this woman that says it all:

Hi Ladies:

I wanted to let you know that your help has yielded great results. THC-A, made using Christy’s recipe, has kept my son seizure free for 5 days. And it’s given us a reprieve as he considers Onfi.

Thank you both for being truth tellers. 

There are so very few in the world. 

That made me so happy -- relieved, really -- that I can give back in some way.

Here's a cool interview that Jeneva Burroughs Stone did with me for Caregifted.org:

FAQS On Medical Marijuana

The New Job

Woman Writing
Picasso

I've alluded to The New Job during the last couple of months, so here it is. I'm writing for a company called Weedmaps and their websites: marijuana.com and cannabis.com. I'll also be helping to edit other material. It's full-time. I'll be posting several times a week -- interviews, columns, interesting stories that are all related to medical cannabis and human interest. The marijuana.com website is up and running and is an important resource for all things marijuana-related. The cannabis.com site is a work in progress, and eventually my writing will primarily be featured there. I can't begin to express how grateful I am for this job to have come my way, how perfectly it works out for me both financially and flexibly. I will work from home. If Sophie has a bad day and needs to stay home, I can still work from home.  Praise Jesus and hallelujah! Or shall I say praise Cannabis! The irony isn't lost on me that I am still a person who hasn't "partaken" in nearly thirty years, that I got this perfect job because of the often torturous path to healing for Sophie, that I can now parlay my skills into educating and inspiring other families to look at cannabis as a healing plant.

My first article, an interview with a wonderful writer, mother and dear friend and compadre is up today. You can read it here:

Making THCa at Home: An Interview with a Mother


Please leave a comment on the site if you feel like it. And I'd really love it if you'd give me some ideas and suggestions for future interviews, articles and so forth that I could work on. Like everything else in life, it's a grand collaboration, and I wouldn't be here if it weren't for you.

How To Make Cannabis Oil

I've sent you to my friend Christy Shake's blog Calvin's Story numerous times. She's a beautiful mother of a beautiful boy with a severe seizure disorder. She's a magnificent writer. She also makes her own cannabis oil to treat her son. Yessirre, Bob. She also makes her own cannabis oil to treat her son. Today she posted how to do it -- how to make cannabis oil. I'm going to cut and paste the information below, but you can also go straight to her site here and look at the really great photographs that go along with the instructions and, of course, start reading the rest of her beautiful blog.

Those of you who've sent along the recent "findings" about cannabis oil and epilepsy, "announced" at the most recent meeting of The American Epilepsy Society should know that while I appreciate you thinking of me, I have to say that I feel a bit on the smug, I told you so side. The train left the station years ago for many of us, and while we welcome these positive reports -- well -- yawn.

Here you go:

easy as pie: how to make cannabis oil

If I were to vanish from the earth on any given day—get hit by a bus or by someone texting while driving, take a fall down the stairs, get into a car wreck—I think to myself, how might Calvin survive? It’s not an unwarranted worry of mine because, unlike typical children who could carry on with life after the death of a parent, without harm or peril to their physical selves, if I died, it would take a huge and focused effort for Michael to take over everything medically related to Calvin just to keep him alive and buffered from the specter of life-threatening seizures. He’d have to know Calvin’s every medicine, their doses and time of administration, know how to refill them and get prior authorizations from the insurance companies and know how to make Calvin’s cannabis oils.

So, in the interest of recording my methods in the simplest way for Michael (no, I'm not planning on keeling over anytime soon) and, too, for other parents out there considering making cannabis oils for their children, here’s the nitty-gritty of it all. It’s as easy as pie once you get over the initial intimidation of trying something new:

THCA cannabis oil:
This will give you some idea of what to expect, but I highly recommend you study the original recipe I use before you begin, which is in much more detail and downloadable from Epsilon Apothacaries. I've included several links so you can visualize and/or purchase some of the items you'll need, many of which you can buy at your local hardware or kitchen store.

1. Start with one ounce of high THC(A) cannabis flower, trimmed well, dried and cured. I use an indica dominant hybrid. Mainers, I get mine at Remedy dispensary in Auburn; they are awesome.
2. Grind the dried bud by hand (wearing thin plastic gloves if you like) or with an herb grinder over a sterile stainless steel bowl. Note: sterilizing instruments is easiest by steaming them, rather than boiling; I found this out the hard way.
3. Transfer the crushed bud to a large sterile mason jar, cover and freeze overnight and ...
4.  Pour 8 to 10 ounces of organic grain alcohol into a second sterile mason jar, cover and freeze overnight. I use cane alcohol from Alchemical Solutions but some folks use Everclear.
5.  The next day, pour the alcohol over the crushed bud and let sit, covered, in the dark for up to 30 minutes (some people recommend as short as 5 minutes), agitating the mixture several times by shaking or stirring.
6. Dump the soaked bud into a medium or large sterile stainless steel sieve placed over a sterile 4 cup glass measuring cup with spout, and press out as much liquid as possible using a sterile spatula, spoon or other tool. Discard or compost the strained plant matter. You can also have it tested to see how complete your extraction was.
7. Push a sterile 75 micron nylon mesh bag partway into a sterile mason jar. Pour the liquid from the measuring cup into the bag (which is partway inside the jar) to strain out further plant matter.
8. Cover the jar and freeze no less than 24 hours. This process is known as winterizing and will remove some of the chlorophyll.
9. Place a sterile 25 micron nylon pressing screen over another stainless mason jar and depress its center to catch the liquid. Secure it with a rubber band or string. Pour the "frozen" liquid into its center while keeping the jar in the freezer so as best to extract the frozen plant matter, which has settled to the bottom of the jar. This straining goes very slowly, so it will need to be done in stages. Keep both jars in the freezer while you wait for the liquid to pass through the screen. The screen will catch a light brownish silt and your liquid will be clear and likely green.
10. Pour the well-strained liquid into a sterile 9 x 13 flat-bottom glass baking pan and place in a darkened, light-tight room (I put mine in the basement, the windows covered to keep out the light).
11. Cover the pan with a rectangle air filter, secure it and place it near a fan positioned at a slight upward angle to aid in evaporation. Some people suggest sterilizing the fan and its blades.
12. After a day or two the alcohol evaporates off and you’re left with a thin layer of golden resin.
13. Procure a sensitive scale, such as a jeweler’s scale, to accurately weigh the resin to at least a tenth of a gram.
14. Place a small sterile glass jar on the scale, which should be set to grams. Make note of the jar’s weight in case something goes amiss or the scale turns off, then tare to zero.
15. Using a scraper and/or razor blades, scrape the resin from the pan into the jar while it sits on the zeroed scale. The resin will be black and tarry. (See tip below.) Make note of the total resin weight in grams.
16. Using a sterile 50ml glass measuring beaker for ease, add 30 mls of edible oil to each gram of the resin and agitate to dissolve over the course of hours/days. I use MCT oil, which is made from palm or coconuts, but I may be changing to a pure liquid coconut oil instead. Many people use olive, safflower or black seed oil. Keep the jar in a dark place, such as a cupboard, away from heat while it dissolves. I usually yield close to 4.5 gms of resin which, by adding 30 mls of oil to each gram, gives me about 140 mls of tincture lasting Calvin about two months at roughly 2 mls per day in divided doses. As of this post, Calvin weighs 57 lbs.
17. Transfer the oil to an amber bottle or bottles easiest to draw up each dose with a dropper or a syringe, depending upon the dose. I like these syringes which can be put in the dishwasher without the numbers washing off; choose white plungers so you can see and measure the oil easily. I use leftover Onfi bottles, which look something like this, their plastic bottle adapters made to accommodate various oral syringe sizes and can also be purchased online or gotten from your pharmacy. I label and date my batches, which are tested by the good folks at two local laboratories, Tested Labs and Proverde. 

To give you some idea of concentration, I start with flower that has about 18% THC. When all is said and done, using the recipe above, I get an oil that is between 21 - 26 mg THCA per ml with roughly 1 - 2 mg THC per ml.

CBD cannabis oil:
Procure dried, cured high CBD cannabis flower (I use a strain also from Remedy). The first step is to bake the bud in a mason jar (or two) with a slightly loose though well-thread lid at 240 degrees Fahrenheit for one hour, agitating every 15 minutes. Let cool to room temperature with the lid just finger tight. (In my opinion, this is the most straight forward way to decarboxylate your bud, but not necessarily the optimum method. I recommend researching and asking an expert, but it has worked fine for me.) Then, continue with the same steps as above, starting with step number 2, however ... 

In my experience, the high CBD strain yields less medicine, so I add 13 mls of oil to each gram of resin instead of 30 mls, and I come up with a concentration of around 43 mg CBD per ml and about 2 mg THC per ml. I continue to fiddle with the potency. You can test your resin before adding the oil to have better control over the final product, but the labs need a fair amount of resin, which is why I test the end product instead and adjust Calvin's dose accordingly.

For much more detailed and precise instructions, please refer to the original recipe, from Epsilon Apothecaries, which you can download. The entire process takes several days but less than a week. 

Tip: to coax the resin to dissolve more quickly into the oil, add 1 ml of oil to the alcohol mixture and shake well just prior to evaporating it in the pan. This will dilute your final resin some, but will make the scraping easier and the dissolving faster. Simply weigh 1 ml of oil so you know how much weight to subtract to get the net weight of pure resin. In my experience, 1 ml of MCT oil, for instance, weighs about 1 gm. For instance, if you add 1 gm of oil to the alcohol mixture and, after it evaporates, you are left with 6 gms of resin substance, subtract 1 gm to account for the oil and your total net resin weight is 5 gms. Make sense?

Disclaimer: I can't be sure you'll end up with what you want or with an oil that will help your child's seizures, but perhaps it's worth a try. Remember, keep things as sterile as possible throughout the process.

Best of luck!

Benzo Withdrawal Syndrome and More Ragging on Some Neurologists

My friend Christy Shake posted this on her blog Calvin's Story, but it bears repeating. It's also especially effective given the amount of condescension and mockery we endured last week during the neurology conference. I have a vague, unsettled memory of one of the docs claiming that some mothers with kids on CBD had neglected to mention that their children had explosive diarrhea for a week when the trial of synthetic CBD started. The fact that they are using gigantic amounts of the stuff for the testing aside, her statement that mothers aren't to be trusted in what they report was what incensed those of us dealing with the following shit (Sophie has been on this particular benzo, Onfi, for over eight years. She's been on and off of various benzos her ENTIRE LIFE since she was an infant of three months).


Benzodiazepine withdrawal syndrome—often abbreviated to benzo withdrawal—is the cluster of symptoms that emerge when a person who has taken benzodiazepines and has developed a physical dependence undergoes dosage reduction or discontinuation. Development of physical dependence and or addiction and the resulting withdrawal symptoms, some of which may last for years, may result from either drug seeking behaviors or from taking the medication as prescribed. Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis, and suicide. Further, these symptoms are notable for the manner in which they wax and wane and vary in severity from day to day or week by week instead of steadily decreasing in a straightforward monotonic manner.

It is a potentially serious condition, and is complex and often protracted in time course. Long-term use, defined as daily use for at least three months, is not desirable because of the associated increased risk of dependence, dose escalation, loss of efficacy, increased risk of accidents and falls, particularly for the elderly, as well as cognitive, neurological, and intellectual impairments.

Benzodiazepine withdrawal can be severe and can provoke life-threatening withdrawal symptoms, such as seizures, particularly with abrupt or over-rapid dosage reduction from high doses or long time users. A severe withdrawal response can nevertheless occur despite gradual dose reduction, or from relatively low doses in short time users, even after a single large dose in animal models. A minority of individuals will experience a protracted withdrawal syndrome whose symptoms may persist at a sub-acute level for months, or years after cessation of benzodiazepines. The likelihood of developing a protracted withdrawal syndrome can be minimized by a slow, gradual reduction in dosage.

Chronic exposure to benzodiazepines causes neural adaptations that counteract the drug's effects, leading to tolerance and dependence. Despite taking a constant therapeutic dose, long-term use of benzodiazepines may lead to the emergence of withdrawal-like symptoms, particularly between doses. When the drug is discontinued or the dosage reduced, withdrawal symptoms may appear and remain until the body reverses the physiological adaptations. These rebound symptoms may be identical to the symptoms for which the drug was initially taken, or may be part of discontinuation symptoms. In severe cases, the withdrawal reaction may exacerbate or resemble serious psychiatric and medical conditions, such as mania, schizophrenia, and, especially at high doses, seizure disorders.

The following symptoms may emerge during gradual or abrupt dosage reduction:

Aches and pains
Agitation and restlessness
Akathisia
Anxiety, possible terror and panic attacks
Blurred vision
Chest pain
Depersonalization
Depression (can be severe), possible suicidal ideation
Derealisation (feelings of unreality)
Diarrhoea
Dilated pupils
Dizziness
Double vision
Dry mouth
Dysphoria
Electric shock sensations
Elevation in blood pressure
Fatigue and weakness
Flu-like symptoms
Gastrointestinal problems
Hearing impairment
Headache
Hot and cold spells
Hyperosmia
Hypertension
Hypnagogia-hallucinations
Hypochondriasis
Increased sensitivity to touch
Increased sensitivity to sound
Increased urinary frequency
Indecision
Insomnia
Impaired concentration
Impaired memory and concentration
Loss of appetite and weight loss
Metallic taste
Mild to moderate Aphasia
Mood swings
Muscular spasms, cramps or fasciculations
Nausea and vomiting
Nightmares
Numbness and tingling
Obsessive compulsive disorder
Paraesthesia
Paranoia
Perception that stationary objects are moving
Perspiration
Photophobia
Postural hypotension
REM sleep rebound
Restless legs syndrome
Sounds louder than usual
Stiffness
Taste and smell disturbances
Tachycardia
Tinnitus
Tremor
Visual disturbances

An abrupt or over-rapid discontinuation of benzodiazepines may result in a more serious and very unpleasant withdrawal syndrome that may additionally result in:

Catatonia, which may result in death
Confusion
Convulsions, which may result in death
Coma (rare)
Delirium tremens
Delusions
Hallucinations
Hyperthermia
Homicide ideations
Mania
Neuroleptic malignant syndrome-like event (rare)
Organic brain syndrome
Post-traumatic stress disorder
Psychosis
Suicidal ideation
Suicide
Urges to shout, throw, break things or harm someone
Violence

excerpts taken from Wikipedia but most is on white drug insert

It bears repeating to say that my child and thousands like her have been on little tested combinations of drugs with no success controlling their seizures for as long as pharmaceuticals have been around. There is little recognition of this FACT. Holding cannabis up to these phantom-like exacting standards is not just BULLSHIT, it's unethical and borders on criminal.

I'm the sort of person who looks at the vastness of the universe and is comforted, rather than terrified, by my own smallness and relative insignificance. I've always told my boys that one of my dreams is to go up into the atmosphere in a rocket ship and look out a window at the Earth in space. I'm so drawn to astronauts' words of that experience, and this morning, when I read my friend, fellow writer and mother of a child with epilepsy, Christy Shake's post, I was inspired.

I feel at turns disgusted and terrified at the havoc wrought in the name of power, religion and territory in the Middle East. As the Hamas rockets fly and the Israeli bombs return, I deflect the insanity with a sort of bitter humor. That'll show 'em, I might mutter, when I read the leaders' threats. This show of force will surely be the end of all conflict. 

There's nothing new under the sun, is there? The Old Testament had it right, at least there.

I wonder if the Universe -- whatever force inherent in it -- looks at our beautiful blue and green globe and sees it as insignificant, just a speck in a vast continuum.

Full Moons and Fires and Seizures, Oh My! Oh, and Earthquakes!

Downtown Los Angeles, 1/16/14
photo via thewire.sheknows.com

No sooner had the ink dried on the two-week proclamation of Sophie being seizure-free for two entire weeks, then I received a text from her teacher at school that one occurred. That was Wednesday afternoon, and yesterday was a bust -- many seizures all day long, the subsequent clamminess and then the combined out-of-it-ness and agitation.

Small sigh.

The sigh is small because Sophie went two weeks without a seizure! I'm going to attribute the breakthroughs to the full moon, the fires burning just outside Los Angeles (the picture above, although not mine, is what most of us saw all day yesterday and then,late in the afternoon, smelled), the incredibly dry air, Santa Ana winds, small earthquakes (so far) and Oliver's Cold That Sophie Might Be Catching.

Medium sigh.

In the meantime, my record of meeting bloggers in person and adoring them stands as perfect. Christy Shake of Calvin's Story was in town and stayed with us last night. She is as lovely in person as she is a beautiful writer online, and I felt as if we were old friends. We talked and talked, ate a delicious dinner at a Korean small plate place in Beverly Hills -- tiny Brussels sprouts, roasted with tiny dried prunes, zucchini and peppers, a seafood pancake with salty dipping sauce, a salad of avocado, tiny figs, crispy rice and pomegranate dressing, and whole grain pot stickers with chicken -- and then talked some more back at our house before going to sleep. I am so grateful for these online relationships that morph into real-life ones.

Do you need a sweet laugh?  Read John Hodgman's New Yorker essay"Downton Abbey" With Cats  for a grand one.

Level the Playing Field

Here are some statistics from the Centers of Disease Control and the National Institutes for Health. Notice the disparities.


Disease                      NIH funding       Americans      Annual                
                                    2012                      afflicted           deaths
                                   (in millions)

Alzheimer's                 $498                    5.4 million         83,000

Epilepsy                       $153                     3.2 million        50,000

Breast Cancer            $712                     200K*                41,000
Parkinson's Disease$151                     1 million                15,000
Multiple Sclerosis      $121                    400K                     2,400


**annual new cases on invasive breast cancer equal to annual number of new epilepsy cases

My friend, the writer Christy Shake of calvin's story is working tirelessly on behalf of children with epilepsy and their families. She would love for you to sit up and take notice of the facts outlined above and the dire need for funding to help eradicate this disease that so adversely affects her son Calvin and my daughter Sophie, two among millions who have epilepsy. Donate to cure epilepsy now here.

Christy, Calvin, Anne Lamott and me, sitting on the dock of the bay

Sitting in the morning sun, here at my desk, on the dock of the bay, seemingly watching the tide roll away, wasting tiiiiiiiime,  I clicked on my friend Christy's newest post on her blog Calvin's Story, a repost that I was surprised to see she'd dedicated to me. Christy is one of the beautiful women I've met online who has a child with severe epilepsy, and not only is she a kickass mother and a kindred soul, she's a soaring writer. Thank you, Christy, for this beautiful tribute.

The weird thing is that just last night, I went downtown to my beloved Los Angeles Public Library and listened  to Anne Lamott in conversation with Father Gregory Boyle, and that woman's funny, wise words are still zinging about my head this afternoon as I watch the tide roll away. I'm thinking about paradox, about the ability to hold conflicting ideas and emotions at once, about riding the hated roller coaster with joy and exhilaration, about look like nothing's gonna change and everything still remains the same and then opening a blog post with words that sustain me.