Dragon Prayer

I'm really slacking off here on the old a moon, worn as if it had been a shell.  I don't even know where to start. Do I even need to start or start back? Sophie turned 22 years old on the 8th, and there was a bit of celebrating,

but Sophie isn't doing so well.

I had a mini nervous breakdown this week, too, which involved some early morning throwing of the Virgin Mary Oracle and other desperate drama, and that was partly because the Republif*^ks are dismantling our healthcare and partly because I went into the wormhole of Trying to Figure Things Out and have decided that Sophie is suffering from benzodiazepine withdrawal syndrome.  Strangely -- or not --  figuring something out (meaning your intuition is confirmed/affirmed backed by research and science) means an incredible release from fear into calm. The two reasons for my mini nervous breakdown are intricately entwined and can be summed up in three words: Medical Industrial Complex. Normally, I'd explicate, but the rant would be epic and, to tell you the truth, I don't feel like wasting my anger on the screen, and I'm better now, calmer. I'm also too busy fighting with CVS drugstore and Anthem Blue Shield to switch the benzo from tablet to liquid so that I can begin the process of weaning again (I can take away tinier amounts if it's liquid). I think the struggle is similar to Ben Carson going from neurosurgery to housing and development, all while comparing slavery to immigration -- oh, Bless his Neurosurgeon heart. 

You're going to need a pre-auth because this is a narcotic, the earnest pharmacist told me for, perhaps, the five millionth time since Sophie has been on this drug for nine years (the drug should apparently not be taken for more than a few weeks but, hey, let's give it to babies with epilepsy!) I'm also administering a new protocol of THC to help mitigate the horrendous effects of the syndrome and gathering information from the wonderful Dr. Bonni and from my friends in the know because The People in Charge don't know jacksh*^t about marijuana. Speaking of those in the know, the Ass Hole Care Act (AHCA) as proposed by the Chief AH Eddie Munster will be devastating to those with disabilities in particular and not much better for everyone else. It'll be awesome for insurance companies, though, and medical device manufacturers and, I guess, for those yokels out there who think the government has been coming between them and their doctor with the Affordable Care Act (yokels, insurance companies call the shots, not the government but hey, big business, free markets, the glories of unfettered capitalism!)

Oops. I said I wasn't going to rant.

Maybe I should quote a little Jesus.

Blessed are the meek for they shall inherit the earth. (Matthew 5:5)

Then shall he answer them, saying, Verily I say unto you, Inasmuch as ye did it not to one of the least of these, ye did it not to me. (Matthew 25:45)


Bikkhu Boddhi says,  "if we are to close the gap between ideal and actuality—between the envisaged aim of striving and the lived experience of our everyday lives—it is necessary for us to pay greater heed to the task of repetition. "

I think of myself at present as a dragon coming out of a cave. There's vision and hope in the fire coming out of my mouth, and there's also my tail, its scales the glitter of the past, replicated over and over. The blast of fire. Drag. Swish.

Scared Sh*tless and Resistant

Just when I think I've had enough, there's something more. Yesterday it was reading that Drumpf (#notmypresident) had appointed arch-conservative Georgia congressman Tom Price to be his Health and Human Services secretary. These appointments -- this vile human being and Jim Sessions, the arch-conservative racist senator from Alabama who will be the chief law enforcer, and the billionaire woman who will be in charge of wrecking public education, render me scared shitless in a profoundly personal way. I'm afraid that there might literally be nothing positive to be salvaged over the next four years and possibly longer, that any progress we've made during the last eight years will be utterly squandered and that the lives of the most vulnerable people in our country -- the disabled, in particular -- will be damanged irrevocably. Both Price and Sessions are vehemently opposed to medical marijuana -- have fought in their respective states against it, have made ignorant statements about it and will now be in the position to reverse a lot of the gains that have been made during the last couple of years, even. Price despises the Affordable Care Act and wants to turn even our right to healthcare into a commodity -- something to bid for, to shop for. Sessions has made disparaging comments, on the record, about public education, particularly special education, leading many to believe that he will work hard NOT to defend the American Disabilities Act and the Individuals with Disabilities Act. He called the inclusion of disabled students (particularly those with behavioral challenges related to their disability) "the single most irritating problem for teachers throughout American today."  He has blamed those disabled kids getting accomodations for the "decline of civility" in this country.Do you think, as Attorney General, that he will have the best interests of my daughter and millions like her in mind?

These people will gut the ADA and they will gut IDEA. They will take away women's reproductive freedom, and they will do it in the service of their fucked up god. They will stall the descheduling of marijuana and go after even those states that have legalized it. They will deny people of color and religious minorities their constitutional rights.

Do I sound hysterical? Do I sound like a sore loser or a whiner, as cousins of mine stated on their Facebook page two days after the election? Do I sound angry?

I'll tell you something. I'm almost hysterical. I'm not a sore loser, but I'm losing. I'm not whining. I'm shouting through words. And yes, I'm angry. I'm going to resist being scared shitless, though, because this is my country, too. A country is only as strong and great as its attitude toward the most vulnerable of its population. Right now, America is poised to be led by a racist misogynist who was voted in by a minority of selfish, uneducated and ignorant citizens . Whether it's him or the craven Republicans pulling the strings, he's surrounding himself with a bunch of privileged sycophants.



For the past two weeks I have woken in dread for what has been wrought on us personally and as a culture and nation. People whom I love have brought this on us, and I just can't shake it.

Yes, this is a rant. I'm waking in dread, but I'm moving forward in resistance.







Today is Giving Tuesday. You can help these organizations that help the disabled. We will need it more than ever --

1. Jewish LA Special Needs Trust

#Giving Tuesday is finally here! As a new nonprofit, we are excited to join this global day of helping and caring for others in need. Remember, all gifts to JLA Trust will be used to help our Outreach and Education activities, and allow us to assist more people with disabilities. You can ensure that a veteran living on government benefits is able to enjoy a higher quality of life and that a single mother can plan ahead with confidence for her child with disabilities  by clicking here! Your dollars will help us help others.

2. Caregifted

TODAY REALLY MATTERS. Gates Foundation doubles your "Giving Tuesday" donation. That means for every $100 we get $200 today only-- and bless you, if you happen to be able to donate $1000, then the $2000 we get takes care of travel and food for an entire caregiver getaway! I donate upscale hotel lodgings for all caregiftees-- can you help with travel and food? Why do I feel so strongly (as my mother did before me) that the woman's touch is so much needed in this world? And there are some amazing caregiving men, too-- we need to reach a hand out to them. THANK YOU ALL WHO HELP.

3. Realm of Caring

We improve lives through Research, Education, and Advocacy. By funding and conducting Research, we learn more about cannabis and its effects while legitimizing the therapy.Education empowers consumers to select the best products for their individual needs, and informs healthcare professionals about options for their patients. Through Advocacy, we spread the truth about cannabis and expand access to those in need. 

Spinning

At the osteopath's office

The biggest spider that I have perhaps ever seen spun an enormous web that spanned about a quarter of the width of my backyard, and every morning I stood on the stoop outside my bedroom and looked at it, glinting in the sun. She sat in the middle of the web, waiting, I guess, for any errant creature to be ensnared. When I walked up to her, she sat there still, still waiting, and when I lay my finger on one of the anchor threads, she skittered up the vast and intricate highway and onto a cable that stretches the length of the backyard. This morning I stood on the stoop to see her, but she was gone and the web only a tattered thing, threads hanging.




This morning I struggled with Sophie or, rather, struggled with my despair as Sophie struggled with her seizures. It's been twenty-one years since it all started and nearly three weeks since Sophie's last hospitalization, and while her seizures are fewer and consigned to the early hours of the morning from, let's say, 4:00 am until 7:00 am when they come, one after the other, in her sleep, her days are spent very drowsy -- let's say totally drugged -- and she's unable to go to school. She is weak. She is on one drug -- a pretty massive dose, compared to where she was -- and CBD. I don't have any answers to the questions, so stop asking why? what do you think? what do They say? I don't know. I think nothing. They have no fucking idea.

I'm a giant spider, sitting in the middle of an intricate web that I've built over two decades. I'm waiting for an answer.

Here's what They did:

Sophie isn't having a lot of seizures, except for those few in the early hours of the morning (that reduce me to a raving lunatic, especially when I find her soaked in her bed and must strip it and her, even as she seizes) because she is drugged with Onfi, a powerful and dreadful benzodiazepine. She was, basically, ripped off of Vimpat, an anticonvulsant that she'd been on for over eight years (a small amount in the end, but a small amount of an AED is still an amount that the brain is accustomed to accommodating), but only after being infused with a giant dose of Vimpat (despite my misgivings about it causing hives) that was followed by giant hives covering her entire torso. Later, in consultation with a dermatologist, the three neurologists attending decided that the Vimpat and the hives were coincidental but, curiously, on the discharge papers the drug was listed under ALLERGIES.  She was hooked up to an EEG for over six days, had copious blood work, lung x-rays and urinalysis, was declared normal on entry and three days after had a urinary tract infection that called for an antibiotic (the only time she has been on an antibiotic in the last fifteen years was last spring when she had her wisdom teeth out). One neurologist suggested the drug FYCOMPA as an option to replace the Vimpat, but I pointed out that it was known to cause homicidal ideation, and The Neurologist agreed that he'd seen pretty serious behavioral issues with it. I'm not going to make any jokes here, so just go back and read those italicized words, Reader, and come to your own conclusions. I'd love it, too, if you read this post from over a year ago.

Remember that I don't have any answers. I'm a spider who's been spinning a web for years and I'm now waiting. The other option via the Great Minds of Neurology was, of course, to ramp up the Onfi and work with CBD (remember that CBD and Onfi together show promise in seizure control), so just like some game contestant, I picked that door and took Sophie home, drugged out of her mind on a nasty benzo and an antibiotic. We had absolutely no resolution to the problems that brought us to the hospital in the first place, although I guess there's some comfort in knowing that Sophie is now officially off Vimpat. They (the Powers That Be/Neurologists) have no idea about the CBD and how and if it'll work. If you remember, THE PARTY LINE is not to pay any attention to CBD other than to give a few winks as a sign of tolerance, at least until the big pharmaceutical trials do their slow slog of research. This is because the federal government still has marijuana listed as a Schedule 1 substance, along with heroin and cocaine, and has determined that it has no medicinal value and therefore no public entity can study it. Sophie had nearly two and a half years with dramatic success on CBD, and at no time during that period did any neurologist express any interest -- real scientific interest -- in that success. So we're sent home, basically, on our own, to figure things out. 

Fortunately, I have Dr. Bonni Goldstein to help me figure things out. We're trying a new strain of CBD, along with THC, this week, and I'm hoping that I can reduce the Onfi at least enough that Sophie can live. Yes, I said live, because what she's doing now is not fully living. She is drugged. I took her to the osteopath this morning, and she lay on the table under Dr. Johnson's gentle hands and actually opened her eyes and smiled at the doctor. It was the first time she'd smiled in weeks, and I know she felt some kind of release. I was sitting on the edge of the table, my hand over her legs, and I couldn't stop crying, so Dr. Johnson stood up and brought me a tissue, told me that it was all right to cry. All will be well, she told Sophie, all will be well.







This is as long of a post as that spider and her web were big. I was going to spin into commentary on Drumpf and the article I read here about his nephew who had infantile spasms, the same diagnosis as Sophie's back on that dark day in June of 1995. I was going to rail about health insurance, how premiums are going up not entirely because of the Affordable Care Act (as the conservatives say) but because our for-profit health insurance industry is utterly dysfunctional. This is my web, my rant and yes, it all goes together. Watching Sophie seize, Drumpf's nephew's infantile spasms, the removal of his healthcare coverage, the expendability of the disabled in our culture, my own fatigue and burn-out despite a wealth of support, pharmaceuticals, party lines, obtuse neurologists stuck in boxes, friends and family who just don't get it, Sophie's seizures, and I'm skittering away, my web tattered.

Here's what we need:

1. The federal government needs to deschedule marijuana
2. Pump money into researching its use as medicine
3. Keep Big Pharma out of it by fostering equal partnerships between patients, farmers, interested parties and researchers
4. Expand the Affordable Care Act into universal health coverage
5. Vote for Hillary Clinton for President and hold her accountable
6. Kick Donald Trump and every single racist, misogynistic, homophobic, xenophobic person who votes for and supports him out of the country and into exile on Guantanamo or one of those for-profit prisons filled with generations of black men who were thrown into them for possession of marijuana during the fake Drug Wars.

An Homage to Roseanne Roseannadanna

I have many copies of the above document, sent to me by either Healthnet, our private insurance company or Medi-Cal, our secondary insurance company. The other day, I think I mentioned that I got fourteen separate denials for the various components of Sophie's ordered wheelchair, each component getting its own denial which was two pages and then a third page letting me know that whatever information was in the first two was available in any one of the above languages.

Foot Pedal -- denied
Back Pad -- denied
Head Rest -- denied
Seat -- denied

And so on. Fourteen components.

Each three-page document had its very own envelope and stamp, of course, was pushed through the slot on my porch door by our mailman and lay scattered at my feet when I pushed the door open. As you can see, if I have difficulty reading the English language, the law of the land provides for me in Spanish, Chinese, Vietnamese, Korean, Tagalog, Armenian, Russian, Japanese, Farsi, Punjabi, Khmer, Arabic, Hmong and Laotian. I have no problem with the diversity of languages offered and actually believe it's one of the best and most extraordinary things about living in these United States and particularly Los Angeles which is arguably one of the most diverse cities in the world. I am decidedly not one of those people that freaks out over people not learning English well, something that seems to unsettle a certain type person no matter their political persuasion. I'm not naming names, but they're related to me in blood and marriage.  What I do object to is the use of paper and the cost of paper and the aggravating and stubborn inability of private and public behemoths to figure out a way to provide our explanation of benefits and denials and exciting news of  premium increases in our language of choice to begin with as opposed to every single damn time they send something. If I were a therapist, I might offer myself a gentle hand and nod and think this is clearly not about the excessive amounts of paper but perhaps more about the early trauma exacted on this woman so many years ago. But I'm not a therapist. I'm a writer and a mother and a human being exquisitely sensitive to the absurd. You know what? I got a notice yesterday from The Insurance Company, denying the amount charged for Henry's well child check-up and vaccine (yes, I know, he got his first vaccine and I don't think you heard a peep from me!) on the basis that there was not a proper diagnostic code on it. When I called and pointed out that there is indeed a diagnostic code for well child/preventive care, the Bartleby argued for a minute or so, I produced the copied document and pointed it out, and he said, why you're right, our mistake, and while I sighed, I also thought about my old friend at L'Espinasse, the uber-fancy restaurant where I started my culinary career in my other life, how he'd send someone into the walk-in for something that they inevitably couldn't find, so he'd exasperatedly go in there and pluck the item right from the shelf and yell in his Cajun voice, WHAT'S THIS? A PORK CHOP? I really wish I'd yelled that at the insurance company guy when he argued for a bit with me and then realized his mistake. Instead, I stripped naked, grabbed the bottle of vodka from the freezer and ran around the neighborhood to calm down. I still have to hunt down our neurologist to get her to provide yet another piece of paper attesting to Sophie's need for an EEG so that the insurance company can cover at least a bit more than it will right now. And if I told you that I push SEND for our gigantic ass premium even five minutes past the due date, I swear there's an envelope in the mail the next day stating my rights should I not honor the grace period offered to me, how my insurance will be cancelled and thanks for doing business with us -- followed by the notice in all the different languages known to Angelenos in the tenth month of the fourteenth year of the third millenium on Planet Earth.

As Roseanne Roseannadanna said, It just goes to show you, it's always something -- if it a'int one thing, it's another. Or better yet, I thought I was going to die!

Orange, Tan, Boner-Man - A Rant Against the Machine

I'm proud of my little nasty, snarky epithet for Speaker of the House, John Boehner who yesterday actually uttered these words:

The United States of America has the best healthcare delivery system in the world.

This comment alone makes me want to start digging a grave -- not for The Tan Man --but for myself and the millions of other people in this godforsaken rich as shit country who have been struggling with the best healthcare delivery system in the world ever since Sophie was diagnosed with a devastating seizure disorder nearly nineteen years ago. As a member of an HMO at the time, I had to get approval before seeing a specialist, and then when I got approval, we were told that the wait to see the neurologist was four months. In New York City, home to two, if not three, of the world's "greatest epilepsy centers," I would have had to wait four f**king months for a neurologist to see my baby.

Do you know what happened?

A woman I grew up with in Atlanta, married to a New York City billionaire, took offense to that wait and called her husband's room mate from college who happened to be a pediatric neurologist who then called me and instructed me to go to the emergency room of New York Hospital where I was met by an official and ushered through triage and the emergency room. Less than four hours later, Sophie was diagnosed with infantile spasms, a type epilepsy that if not treated as soon as possible, can cause regression and all manner of horrible things. So, let me emphasize that our journey through "the best healthcare delivery system in the world" was initiated by a billionaire because it takes a billionaire to make things happen. Despite that white-gloved early diagnosis, the carpet that unfolded in front of us for the next two decades was so beset with aggravation, wheeling and dealing and stupidity that I'm a changed person because of it, and not in a good way. Multiply our experience with the best healthcare delivery system in the world a thousand-fold plus -- because this isn't just about Sophie or our family. It's still going on and only barely improved by some of the new laws of the Affordable Care Act which, it seems, might just implode any moment.

Long live the plutocracy and f**k The Tan Man and all the people who believe him.

I feel better having said it and thank the universe for blogging. You should try it if you want to jump from a roof or hang yourself, because if you're like me, it'll save your life. You'll just give it all up, take up smoking cigars and let it all just go to hell.