Tuesday, September 30, 2014

Free Cannabis Treatment for a Year




I'm really not kidding you. The wonderful people making the documentary The Green Standard, whom I've already told you about, have added a perk to their current indigogo campaign. Here's what they say about it:

Anyone who contributes to The Green Standard’s campaign is eligible to nominate themselves or a friend or family member in-need to receive up to a year of CBD treatments for FREE.  We are very excited to  be launching this first-of-its-kind giveaway, and we will be selecting a winner whether or not we reach our documentary’s funding goal by the October 10th deadline.




Pretty wonderful, right? Go to the campaign to get the details. And watch the trailer. 











***Oh, and don't nominate me. I'm not receiving anything in return for helping these guys to make this promising documentary, but I absolutely do not want to be in the running for this. The universe has been abundant for me and for Sophie with Charlotte's Web. Let the abundance be shared!

Interior



As I loaded my car with a bunch of crap from Target today, I had one of those bourgeois moments of despair. I'm not going to elaborate because it's been done before, and it bores me probably more than it would bore you. It had something to do with the plastic bottle of environmental clothes detergent and the California drought, the quandary of two decades of diaper wipes on Sophie's skin, a bag of French onion bread flavored potato chips. You know what I'm talking about, right? This blog is nothing but an endless conversation, isn't it? The other day, I had a long-distance healing from a famous healer. I have done these things on and off for a long time, and I believe in them to the extent that I believe my purchase of environmental detergent is going to make a dent in the ocean of sulfates that our species has been bathed. I open my heart to it as much as I do to the hope that the several hundred dollars I made recently doing a small project for a friend is going to tide me over until something else comes along. Dig a new hole and then fill it up. The healer was funny and sweet and had some incisive comments and advice. She said a bit of mumbo jumbo about gratitude and vibrations of abundance, but she also spoke about the word please and how it doesn't work in prayer. She said beautiful things about forgiveness and gave me an exercise to do that involves letters to those I need most to forgive. When you're in the emotional basement, she said, bring it to the ceiling. That makes me think of balloons, somehow, and the way they bob and float around a house for days.

Don't think about what you don't have. Think about what you desire.


Monday, September 29, 2014

Cannabis Oil Questions, Answered #5



I just got my doctor to recommend CBD oil for my child that suffers from epilepsy. Does anyone know where I can get CBD oil today? 

That was actually a question posed today on one of the closed Facebook groups that I surf around on periodically. These groups have been a wonderful resource and community and stop short of being overwhelming, mainly because they're new and the threads are short and the members are all incredibly warm and friendly and open in sharing their experiences and knowledge. Back in the dark ages, when the internet was just beginning to emerge as a lifeline for those of us in the disability community, I would sign up for these things called chat groups and listservs on major epilepsy sites. You could pose a question and get an answer -- or five thousand answers -- and each would lead you down a tiny rabbit hole that led to a dark warren where gigantic rabbits with whiskers and red eyes would sit twitching. At least that was my experience. Eventually, I quit asking questions in chat rooms or listservs (why was there never an e at the end of that word?) and climbed up out of the ground and into the sunlight where I foraged around in doctors' gardens, stealing their vegetables, dodging bullets and withstanding the occasional rake to my head. If you fast forward seventeen or eighteen years, when I got serious about trying to find some medical marijuana for Sophie, I went at it pretty skeptically, my sense of urgency muted both by necessity (hopes dashed) and experience (feeling frantic and doing things frantically almost never works). Despite the necessity and experience, though, it was a damn slog that you've read about here, ad nauseum. Here's the thing, though: Sophie got Charlotte's Web in late December, and by January her seizures were dramatically reduced -- that's nearly nine months ago. In those nine months, several very cool Facebook closed groups have popped up with thousands of very cool individuals posting questions daily, looking for information. They get answers. There don't seem to be any rabbit holes, either. The fact that someone can ask the question above using the word today and get an answer, maybe even a product, is an amazing, wondrous thing. 

Honestly, this old bunny feels like there's hope, still, in ordinary people living extraordinary lives being able to make change without power or influence or vast amounts of cash.

It's only been nine months that this old bunny pioneer has turned to historian!

As for an answer to that question, there were several. Things are happening and happening fast. Email me, go to Realm of Caring or join one of the closed Facebook groups. I promise there are no twitchy, red-eyed rabbits down dark holes anymore.


Other Cannabis Oil Questions Answered

# One
# Two
# Three
# Four

Housekeeping

Grant Park, Chicago


I'm back and have hit the ground running. This morning, Henry observed that I was a tad obsessive about cleaning the kitchen, Mom. He and I are up first every morning because he goes to school in the deep, dark Valley, and we need much preparation before our journey. I was spraying the microwave down and then the cupboard doors before moving on to using the stainless steel spray on the fridge door. Watch that pile! I might have cried out as Henry walked over to the counter to get a spoon for his gigantic bowl of cereal that fortifies him for the journey ahead. He was about to kick the stuff that I'd swept up, the detritus of a weekend without me. Jeez, Mom, he said between mouthfuls, as I wiped at the newspaper smudges all over the door molding. I'm not upset, I said. I'm cleaning for my own sake. Because that's how I like it.  My days of resentment have cleared away for the most part. It took many years to get that way, but I'm, if not proud then relieved, to feel diligent more than aggrieved, content by my actions more than enraged by the lack of theirs. At worst, I feel slightly superior. Henry downed a glass of milk and got up to go finish his toilette and pack his provisions for the journey. I wonder how long I could go without cleaning anything around me, he said. Maybe two weeks? Or three? He was, if nothing else, equally as self-satisfied as I.

Sunday, September 28, 2014

Dispatch from Chicago O'Hare


I'm in the Chicago airport. I've had a wonderful weekend with two friends from college. I've been here for five hours -- in this airport -- waiting for a plane to take me back to LAX. I've had lunch. I've walked back and forth through the tunnel connecting Terminal B and C. It's maybe cooly futuristic and maybe anesthetizing in the worst way. I've had popcorn. I've had a scoop of coffee ice-cream. I've had a foot massage in a weird little airport spa. The masseur was an enormous Michael Jordan lookalike, which might have been exciting were it not for my slightly unshaved legs. I've had a beer in a bar. Evidently,  there's a football game that I'm ignoring. I hate football. I've been reading. I read this in the wonderful novel "We Are Not Ourselves" by Matthew Thomas:

Life, she thought, was like that sometimes; for years, things were a certain way, and then, in an instant, almost without conscious thought, they weren't that way any longer, as if all the hidden pressure on their having been the way they'd been had found release through a necessary valve.

Evidently our plane is leaving within the hour. So it goes.

Thursday, September 25, 2014

Jumping into (again) the vaccination fray (at the edges)



Last March, I wrote a post that I titled Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum. You can read it here. Other than a post that I wrote about six years ago that I titled Big Guns (which was about some new seizure medication we were going to try, but you know all the gun nuts were googling that term), the vaccination post has received the most hits -- thousands and thousands of them. I wrote then that I wouldn't ever write about the subject again, but here I am with a bit more to discuss, prompted not only by the latest tiresome admonition from a Facebook friend and her friends to vaccinate your kids, damn it! based on a cheesy article in The Hollywood Reporter, but mainly to discuss a Medscape article that appeared in my email this morning. The title of the article is Most Vaccination-Onset Epilepsy Has Genetic, Structural Cause.  Unless you're lucky enough to have a Medscape account (reserved for those of us who hold out hope that we'll discover the reasons for why our children seize or develop any number of horrifying diseases by staying on top of things), you might not be able to read the entire article, but the gist of it is basically in the following two paragraphs:


In most children whose epilepsy started following a standard vaccination, there's a genetic or structural cause, and about a third of cases of epilepsy triggered by a vaccine are relatively benign, a new study suggests.
These results indicate that vaccination-related epilepsy doesn't necessarily have a poor prognosis, said lead author Nienke Verbeek, MD, clinical geneticist, Department of Medical Genetics, Division of Biomedical Genetics, University Medical Centre Utrecht, the Netherlands.
The findings, added Dr. Verbeek, should come as a relief to clinicians and parents and increase their confidence in vaccination.
I found the rest of the article interesting and compelling because it addresses something other than the autism/vaccination clusterfuck -- namely, that vaccinations do carry risk, particularly if a genetic/structural abnormality exists. While the article might be reassuring to some (and I believe that was its intent), I can't help but wince at phrases like relatively benign and doesn't necessarily have a poor prognosis for obvious reasons. I balked at the explanation that a child who began to seize after vaccination would have begun seizing anyway, if he has a congenital abnormality or genetic predisposition to do so. There's something casual about the language that terrifies me, perhaps triggers some deep, learned response to trauma and the disconnect I felt very early on from the people in positions of power. There is no discussion of those whose seizures are not relatively benign or those whose prognosis is necessarily poor.
In an argument I got into most recently on a friend's Facebook thread, I was accused of "seeing only what I wanted to see." This person also took offense to my admittance that I wasn't entirely trustful in Science and the Powers That Be. She said, and I quote directly, When I make medical and safety decisions for my children I ONLY want science and academia informing those decisions. Let's face it -- about then I cracked up with both laughter and residual insanity from two decades of dealing with science and academia. I think I might have flippantly told her that I envied her faith because it implied she had never had it tested. My feelings about Science with a capital S have evolved over time, and trust me when I say that it's not a great lesson to have "learned." I guess you could compare it to the statements that very old and wise people make about how the older they get, the more they realize that they don't know shit. I imagine that many of us who have struggled with the medical system and how it treats and studies chronic illness have the same reservations, and I'm not sure if that will ever change in spite of Medscape's earnest attempts to do otherwise.
When I right myself from the intial reaction after reading the Medscape article and study, though, I have some questions. One of these is: What if we had known that Sophie had a congenital abnormality or genetic condition that predisposed her to seizures, so we waited to give her vaccinations in the hope that she might get a bit more development under her proverbial belt before the odyssey of drugs and seizures that would hypothetically be her future? The earlier seizures begin, the poorer the prognosis for development -- for obvious reasons. Children who develop infantile spasms at a later age than Sophie (three months), who have already learned to walk, let's say, or even to say words, can sometimes retain those abilities, particularly when their seizures are controlled. If a three month old baby's brain was given a break from medications and seizures at such a young age, when it eventually did seize, would the parts of it unaffected by prenatal insult be in a better position to compensate for the insult? The brain is elastic, after all.
I'm getting tired here, of typing. This subject always makes me feel physically ill, to tell you the truth. I took a break to speak with a friend who is exploring the use of cannabis for her own 15 year old son who suffers from epilepsy and cardiac issues. She lives in a state where it's illegal, and she's not getting any support from her neurologist, so I'm telling her everything I know, all the anecdotal evidence I have that Sophie's seizures have dropped nearly 95% since she began taking CBD. I wonder if some professional from the land of Science is out there, taking notes.




***Just in case you get your panties into a giant wad on the top of your head or around your neck, I'm slowly vaccinating my sons. I am -- I repeat -- NOT anti-vaccination, but I am -- I repeat -- emphatically dubious that Science has all the answers.

Wednesday, September 24, 2014

Gross Mom

Cesaria Evora


I think there are a bunch of blogs with titles like Gross Mom. I've seen Ugly Mommy, Vodka Mommy, Bad Mommy -- the list goes on, and they always sort of irritate me. I can't stand the word mommy unless it's used by a child toward his (or her) mother. I don't like to be called by any word that stands for mother by anyone, really, than my own children. That would include nurses and doctors and particularly young men or grown men when they use the word mama for me. You know who you are. Humor my little pet peeve, won't you? And I actually love being called baby by the right person. You know who you are, too. None of this sounds very pleasant when I read over it, and I really only wanted to tell you a funny little story that happened yesterday when Oliver and I were in the car driving about the city as we do. Given the fact that I'm sort of a Loser Mom, I had hooked up Pandora (evidently only losers listen to Pandora) and was listening happily to my Cesaria Evora station which included not only her magnificent music but other Latin American songs and instrumentation. What IS this? Oliver asked in his most annoyed thirteen year old voice. No matter that he is prone to fits of embarrassing air guitar to the excruciating sounds of Journey and Boston. I said, It's Cesaria Evora in a pleasant and indifferent tone. Do you even know what she's saying, Mom? Oliver asked. Not really, I answered, but it doesn't matter because she is amazing. Oliver probably rolled his eyes, although I wouldn't know because I was driving and I'm also a Loser Mom Driver. Why do you even like her? he asked. I love this music, I said. It's sexy. You can only imagine the reaction. Gross, Mom! That's just gross! he shouted.

I turned the music up and said, There's nothing wrong with that, baby!


Tuesday, September 23, 2014

About the City on Monday and Tuesday

Sophie playing with a hairbrush while waiting for the doctor.


Oliver just being Oliver.



A blooming bottle brush tree bloom:


A homeless guy camped out in front of a church door:


Far-Sighted (and this post is all over the place)


So, I swear to you that sometime on Sunday night, while I slept, I became very far-sighted. I've taken a ludicrous pride in not needing reading glasses for anything but menus in the darkest of restaurants or the occasional small print on one of Sophie's prescription bottles or even the incredibly small print on my Healthnet insurance card (I've been reading that one aloud a lot lately). I'm 51 years old, and last time I went to the eye doctor, she marveled at how little prescription I needed for them. I've been near-sighted and worn glasses and contacts for every waking moment since I was about seven years old, but most of my friends have been carrying around those little glasses like you see above for years as I proudly flaunted my physical reading acuity. Yes, I'm using hyperbole here to make a point about aging, about how we cling on to the most ridiculous things as we age -- or should I use the first person here and not include you? Anyway, I realized yesterday and today that I need to have my reading glasses on to comfortably read anything at hand, and I swear to the good lord above that this was not an issue even on Sunday afternoon.

Anyhoo. (By the way, new readers should know that using the word anyhoo is sarcastic on my part. I actually hate the expression but find it incredibly useful when describing incredibly trivial matters, like the 24-hour period in which my eyes changed). I do like the word incredible.

Today I took Sophie to a routine doctor's appointment in Santa Monica and had much time in the car to ponder the meaning of the universe and my tiny, little life. I realized that I have been complaining and kvetching a bit too much -- not just here but probably for the last decade or so. I winced at that and hoped that a bit of self-awareness and a few mea culpas will help to remedy it. I had already traversed the northeastern stretches of the city earlier by driving Henry to school in the Valley, and this time, as I headed west, I listened to an audible version of Lonesome Dove by Larry McMurtry. Can you believe that I've never read that book? The beginning is on the man-heavy, western, folksy genre side and probably the reason why I've never read it. I'm not a man-heavy, western, folksy genre kind of woman, but just about when I reached the place on the 10W where the blue sky gives way to coastal gloom and the bazillion cars start slowing and contemplating their merge onto the 405N (who are these damn people and where are they all going? I asked Sophie who was happily reaching for and playing with the beads that hang over my head-rest), a prostitute was introduced, and I perked up and stopped pondering to listen. Prostitution is referred to as "sporting," I think, in the book, and that kept me pondering, too. I thought about how damn hard life was -- and continues to be -- for so many people, and how in many ways we are soft as a people -- not soft in the good way, but rather soft in the spoiled, take-it-all-for-granted way. Again, maybe I shouldn't use the third person, here, but should refer to my own far-sighted self. I have a good streak of soft in me, and it's a childish part whose mask is fifty-one years and a pair of reading glasses. I'm not saying that I need to take up the sporting life to understand what hard is (no pun intended), but I reckon (to use the language of McMurtry), I should get a move on from complaining and kvetching (to use the language of the middle-aged woman). If this could happen as quickly as my eyes changed, we'd all be mighty grateful.


Monday, September 22, 2014

Cat on a Hot Tin Roof That Jack Built, Part Three***



There's the house that Jack built that consists of these inane back and forths with the company that is going to administer the EEG, Sophie's doctor and the insurance company. There's also another house that Jack is building that consists of inane back and forths with the company that is going to provide the wheelchair for Sophie, Sophie's doctor, the insurance company, California Children's Services and Medi-Cal. And today, to top it all off, I got an email from Sophie's service coordinator at the Regional Center (unique to California) asking me to account for the 14 hours a month of respite that we are allotted at a little more than $9.00 an hour, as well as how it fits in with her IHSS hours and her daily activities. I was asked to fill out a weekly schedule, hour by hour, of Sophie's day -- for 24 hours. She attached an excel sheet as an example of what she expected me to do. Please note that I keep careful records, as I'm supposed to do, for all the funding that Sophie gets. I fill out timecards, scan them and send them in when I'm supposed to as well. And if you're a newbie to the houses that Jack builds, these particular services are wonderful -- and entirely necessary,as I'd really, really go insane if I didn't have them. The ultimate purpose is to enable me to stay at home with Sophie and to enable Sophie to stay at home instead of surrendering her care to the state -- or one of the other houses that Jack has built. I will add that any doubters might consider my own tax-paying ability, my own relinquished career dreams, my literal ability to have a full-time job and remain flexible to care for Sophie daily -- and deal with all of this bullshit, too.

I understand the necessity of weeding out the bilkers, the cheats, those who are eating bonbons or even those who are very wealthy yet still claim benefits. But Sweet Jesus God and Good Lord and Dear Lord Almighty and Help me, Rhonda.

I forwarded the email to my friend and comrade S in New York City whose caregiving duties would curl the tiny little hairs on your toes if I told you about some of them, and she of the insane sense of humor quickly sent this back -- probably while she was on hold with the New York City transit system or one of the many nursing agencies that she deals with daily. Her suggestions on how I should respond to the caseworker's request made me laugh out loud and cry a little, to tell you the truth, in gratitude for what saves me in the end: laughter and friendship. The only thing I've changed is the name of my "caseworker." Let's call her Joan.

Dear Joan,
I spend those hours in passionate rapture with Javier Bardem. Do you need more precise details than that?
Love, Elizabeth

Dear Joan,
I spend those hours eating spaghetti. With clam sauce. I can send the recipe if necessary.
Love, Elizabeth

Dear Joan,
I spend those hours crying. Would you like me to account for the number of tears, Kleenex used, and times I blew my nose? Please advise.
Love, Elizabeth

Dear Joan,
I spend those hours writing little ditties about the insanity of it all. My next song is actually dedicated to you.
Love, Elizabeth








***Long time readers of a moon, worn as if it had been a shell, might have noticed that I post the above photo quite a bit on this blog. Elizabeth Taylor's Maggie the Cat, particularly in that photo, captures all of the languour and attitude and sexiness that reside within me, that apparently the Powers That Be are determined to extinguish in their belief that my life consists of lounging in a doorway in my slip, a bottle of alcohol just out of sight along with Paul Newman languishing on a bed with his broken leg, not to mention Richard Burton off-set with some new jewelry.  I hope that if I keep calling her up and posting her picture, I might not lose sight of that.





The House That Jack Built, Part Two***

illustration by Collette J Ellis


This one is a prose poem, sent to me by the clerk from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize. I told her last week that the company needs another paper from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize.


Elizabeth Aquino

I called the phone# you gave me and after a 30 minute wait I spoke with Brandi.  She said I needed to speak with the group and told me to call 800-522-0088.   The interactive voice system told me there was a 49 minute wait!    I will try again in the morning when they first open to see if I can get through then.

Thank you for your attention to this matter.  


Please notice that this is all completely out of the doctor's hands, the doctor who ordered the EEG for the girl whose brain loves to seize, a situation which underscores how utterly laughable the conservative's complaint is that "I don't want no government coming between me and my doctor." Because we all know how efficient the private insurance system is -- efficient to an extreme when it comes to collecting your monthly premium and cancelling your coverage if you're late, but otherwise -- well -- that's another story altogethe, perhaps more in keeping with Grimm or even the Marquis de Sade. I've also got to keep you updated on the convoluted Case of the Missing Wheelchair, the latest Nancy Drew installment. Stay tuned.




***Part One is here, in case you missed it.

Taking the Lord's Name in Vain

Years ago, I used the word shit during a speech at my first wedding. Yes, I had a first marriage. I have a past, as they say. Anyway, I used the word shit, and quickly apologized, mainly because my sweet grandmother was sitting right next to me. She laughed her musical laugh, and told me in her soft, southern accent that shit didn't take the Lord's name in vain and was therefore not a curse word. All of this leads me to actually taking the Lord's name in vain because what that means -- in vain -- is what I felt right after I watched this video about disabled children in Russia.

Jesus Christ! I said, and it's definitely in vain because these things are happening every single day and no greater power seems to be in power. In fact, it's difficult to not feel cynical and powerless, to not want to retreat into a cave, close yourself off. God works in mysterious ways, be damned. What can we possibly do to alleviate all of this suffering? Yes, this particular video hit particularly hard for obvious reasons. Not only is it horrifying, but it gives me perspective on my own relatively sumptuous life, and that perspective, however hard won, has been buried under a bunch of woe of late. I've always struggled with relativity -- yes, it's all relative, but then it's not. Suffering is in degrees, if you feel it as so, and my suffering -- hell, Sophie's suffering, is relatively miniscule compared to these children and young adults in Russia in the year of our Lord 2014.

Good god almighty! Jesus Christ!

I'm taking the Lord's name in vain, over and over and over.

Oliver asked me the other day whether I believe in hell. I told him that I did believe in hell but not as a place or a time or something fixed. There is hell all around you, I told him. As there is heaven. I told him I actually believed the words of Jesus Christ when He apparently said, The kingdom of God is at hand. I believe that to mean that it's here and now, the present moment -- the kingdom of God. At hand. Here. Now. The present moment. And hell? Apparently, it's in Russia at institutions for the disabled.




Sunday, September 21, 2014

Tumblr -- and there's no "e"



If you're bored, check out my Tumblr account -- I'm having such a good time putting things up there. I highly recommend opening one and using that space for all those photos and quotes and videos and such that you might want to remember. It's simple to do so and easy to streamline, maybe a time suck but maybe not. You can follow as many or as few people as you'd like. I'm not really using it as social media per se -- more as a place to curate things that I like or things that inspire me or things that amuse me. I'm probably woefully out of date and touch with this, but I don't care.

Here's the link to mine: www.elizabethaquino.tumblr.com

Saturday, September 20, 2014

Give me a home

Museum of Natural History, Los Angeles
September 19. 2014


where the buffalo roam, and the deer and the antelope play. I don't have much to say or write unless you want me to regale you with tales of lost love, ships that I'm waiting on or waiting to recognize because they're already docked. I went to a yoga class this morning and breathed in better than out which if all were metaphor, suggests I don't let things go or I can fill up but not empty. It was a good class. The Brothers and I cleaned out the porch, organized an incredible amount of shit into garbage bags to dispose and boxes to donate. We yelled a lot, too -- at one another. Are you from a passionate family? I drove to El Segundo in the afternoon, the place, now, where Henry practices club lacrosse. It might be one of the ugliest places in southern California which is saying a lot, because our weather might be beautiful, but there are places here that you wouldn't be proud of claiming as your home. LA is a biiiiiiiiiiiiiiiig city, my father said once when he visited years ago, and he didn't mean it in any nice way. It might be his version of my It's a big world. Are you from an ironic and passionate family? This practice was for box lacrosse which is entirely different than regular lacrosse, but it's good for practicing control of your stick and footwork. So I've been told. The Brothers tell me a lot of things of late, and they're very sure of themselves. Regular mansplainers in the making. Just the other day, I was chastised in the car for listening to bad music which happened to be Patty Griffin, and Oliver switched to radio and went into a paroxysm of joy when some Journey song came on. I hated Journey when I was young, and I really hate it now, but watching my thirteen year old -- let's be honest -- geek out, playing air guitar, pretend drum and wailing about a small town girl was just a teensy tinesy bit horrifying. I looked straight ahead, where the buffalo roam and the deer and the antelope play. Where seldom is heard, a discouraging word and the sky is not cloudy all day.

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