Things That Made Me Cry in My Mind, 5/1/19

1. Kamala Harris grilling Barr (so much money and time literally wasted on these hideous people running the country even as we watch it burn, drown and fall)
2. The briefing filed by the Trump administration calling for the complete and total dismantlement of the Affordable Care Act (anxiety, again)
3. The story of the young man in North Carolina who charged the shooter and tackled him and was killed, the photo of him and his impossible life, interrupted by training on how to do such a thing and ended by doing such a thing (disbelief that people think owning guns ensures their safety and freedom)
4. The man in Georgia who lured a teenaged girl off a website for girls with eating disorders to come live with him, engaged her in brutal sex acts and kept her in a cage for some of that time but will not serve any prison time because of the eight months he spent in a detention center prior to sentencing
5. The New York man who was sentenced to probation only for raping a 14 year old girl he met while driving a school bus, who, according to the judge, only raped one girl, rather than multiple
6. People close to me who recently made statements supporting the racist POSPOTUS who is also a sexual predator  and who also would take away the very thing that enables my family to live somewhat more comfortably with Sophie's epilepsy (the tears were real)
7. The article about retail botox centers where you can get injectables as conveniently as hair blow-outs

Reader, I imagine you'd rather see a list of things that make one grateful. 

1. The fluke of a blue whale, seen yesterday from a boat just off the shore of Newport Beach (the tears were real) 

The World We Live In

The World I Live In

I have refused to live
locked in the orderly house of
      reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
       what's wrong with Maybe?


You wouldn't believe what once or
twice I have seen. I'll just
         tell you this:
only if there are angels in your head will you
         ever, possibly, see one.

Mary Oliver, from Devotions, The Selected Poems of Mary Oliver







What's happening here?

Sophie's getting a 48-hour in-home video EEG monitoring. We hope that the IVIG infusions she's been receiving monthly are working to resolve this hideous syndrome. Sophie is strong. I would say that I am, but sometimes I'm not. The tech who hooked Sophie up was the nicest guy. We listened to jazz and talked books. Saint Mirtha is here, making soup. The IVIG nurse was here this morning and had to stick Sophie four times because she's dehydrated. She ordered hydration and that was delivered. I am so grateful for Sophie's life and our strength. I'm grateful for health insurance that allows this in-home treatment. I'm grateful for those legislators that continue to fight the piece of shit that runs our country and threatens to take away life-saving provisions of the ACA that allow Sophie to get healthcare and us to avoid bankruptcy and feel some measure of relief. I know it's not perfect, but it's a grand step in the right direction. Those who think otherwise are welcome to live the life of a person with epilepsy and then the life of a caregiver. I'll train you in both with mastery (meaning you'll forget about supporting that piece of shit if you still do) estimated to take about one month. Guaranteed. If you're not willing, shut up and listen to us. We know how to fight and what to fight for because we have to, all the time.

#healthcareforall
#littlelobbyists
#epilepyawareness
#seizuressuck
#caregiverlife
#wholiveslikethis

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.

Saturday Resistance -- Hear Me Out If You Care About Sophie and People Like Her

I take care of Sophie at home with the help of her father and a part-time babysitter because of a Medicaid waiver that she qualifies for given her cognitive and physical disabilities.She has been "deemed" a person "qualifying" of "institutional care." I am basically paid to take care of her at home, saving the government -- taxpayers -- a considerable amount of money to care for her in an institution. Those are the bald facts. We are, in a capitalist society, reduced always to a number. It saves you money to honor this social contract.

If the Affordable Care Act is repealed, this ability to care for Sophie will be severely compromised. Please read the following email that I've cut and pasted in full to learn more about what's going on for America's disabled and chronically ill.

If you can, lend your voices to the resistance.

I know many of you reading this blog are conservative voters who live in states that are gung-ho bent on destroying the Affordable Care Act. Perhaps you don't realize that despite its imperfections, it has also lent stability to millions of families like mine. Yes, we do struggle with rising premiums. We do struggle with the systematic denial of medical claims. We struggle with the ungodly amounts of money charged for pharmaceutical drugs. I am paid minimum wage to care for her at home, an amount far inferior to that which I might earn in a full-time career. I also struggle to care for Sophie without going insane, to tell you the truth, because it's just brutally hard to do what we do every single day for decades. Sophie's recent 5-day hospitalization cost more than $150,000. That would have bankrupted us if not for the Affordable Care Act and her Medicaid waiver, and I live in a grotesquely over-priced tiny bungalow in an economically rich neighborhood in Los Angeles. I have family that helps me to pay for relief, too. Unlike most people in similar circumstances, I have enough money to get therapy to help me to deal with the caregiving, with the constant stress of seizures, with the possibility of Sophie dying before me or dying afterward.

I'm telling you this to emphasize just how life-altering it was when the Affordable Care Act passed, even with all of its absurd complexity and kow-towing to the big insurance companies. The pre-existing conditions component, the lifetime maximum component, the preventive care component, the birth control component -- shall I go on? Our family was careening toward serious financial difficulties and running the risk of going uninsured before the Affordable Care Act was passed. Sure, we might have been "saved" by family, we might have taken the risk to have no insurance at all. I don't know. What I do know -- again -- is that I have plenty of resources, both financial and emotional and that many, if not most, of my fellow caregivers, their children and families, do not. So I'm advocating for them, really, far more than myself.

Even if none of this comes to pass, if the draconian machinations of Eddie Munster, Drumpf et al come to nothing, if the "replacement" even happens, the psychological distress that many of us are feeling right now is really difficult to convey without sounding whiny, maybe, or privileged. Then I remember what the hell we've all been doing, how much we fought for the ACA to begin with and how we have to do it all over again, even as we continue to advocate for and keep our children ALIVE.

If you can, lend your voices to the resistance.

Read this:

ICYMI: ANCOR Urges Congress to

Protect HCBS as Changes Begin

 

Alexandria, VA – Yesterday, the 115^th Congress approved a budget resolution that sets the stage for the repeal and replacement of the Affordable Care Act (ACA), and allows for changes to the Medicaid program. In response to this action, ANCOR responded with a statement urging Congress to protect the HCBS Medicaid program, and to consider the widespread effects any alterations to the ACA and Medicaid would bring about for people with intellectual and developmental disabilities, and their loved ones.

 

ANCOR has also alerted its members – community service providers to people with intellectual and developmental disabilities – about the vote, and encouraged them to relay these consequences to their representatives and senators. 

 

ANCOR CEO Barbara Merrill responded to yesterday’s vote with the following statement:

 

"Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system, and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are."

 

See below for ANCOR’s statement in its entirety.

 

 

“Today, the 115th Congress concluded their approval of a budget resolution that sets up the mechanism for Congress to repeal and replace the Affordable Care Act and also, through a process called reconciliation, make changes to the Medicaid program.

 

These changes include moving forward with proposals to transform Medicaid to a block grant or per capita cap program. Republicans, who hold the majority in both Houses of Congress, have indicated their intention to move forward quickly with this plan.

 

‘Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system," said Barbara Merrill, ANCOR CEO, ‘and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are.’

 

ANCOR sent an alert this afternoon to its members – community service providers to people with intellectual and developmental disabilities – and urged them to contact their senators and representatives to ensure they understood that decisions to alter the Affordable Care Act or Medicaid as a whole have direct, and at times immediate, consequences for people with intellectual and developmental disabilities and their families who rely on home and community-based services.

 

‘The Affordable Care Act includes the creation of innovative and effective programs, like the Community First Choice Act, which have strengthened the Medicaid program and improved the ability of states to provide quality residential and day services for individuals with I/DD,’ explained Esmé Grant Grewal, Senior Director of Government Relations for ANCOR. 

 

‘The Medicaid HCBS program, while not perfect, is essential to making sure that hundreds of thousands of individuals with disabilities can live in the community. Historically, when states needed help in shifting children and adults with these disabilities out of large and isolating institutions, the HCBS program was created as a federal and state program to support that need.’

 

ANCOR urges Congress to engage stakeholders when considering changes to the Affordable Care Act and Medicaid, and offers itself as a resource to any Congressional office.”

ANCOR is the American Network of Community Organizations and Resources. 

Shame

on you for voting for Drumpf.

Shame on you for not voting at all.

Shame on you for supporting Republican policies.

Shame on you for reducing everything to economics.

Shame on you for your racism, misogyny, xenophobia, greed and ignorance.

Shame on you for being a climate change denier.

Shame on you for supporting a man who mocks the disabled.

Shame on you for supporting the sexual assault and degradation of women.

Shame on you for claiming that you're not a racist or a misogynist or xenophobic, greedy or ignorant. You have condoned all of the above with your vote and support.

Shame on you for claiming that you do not support the sexual assault and degradation of women. You have condoned all of the above with your vote and support.

Shame on you for denying what we can see with our eyes.

Shame on you for supporting those who, in the middle of the night, voted yes to repeal the Affordable Care Act.

Shame on you for undercutting those of us who have real issues at stake.

Shame on you who say get over it, don't get your panties in a wad, be patient and see what good will come.

Shame on you for not listening to those of us who deal with healthcare issues every single day, who've told you that this repeal will be harmful.

Shame on you for not realizing that even the thought and the build-up to the repeal of the Affordable Care Act is deeply damaging to the psyches of many people who've been through far more than you can imagine.

Shame on you for claiming to be Christian when literally everything that's going down is anathema to the teachings of Jesus Christ.

Shame on you for equivocating.

Shame on you for using false equivalencies when truth hits you in the face.

Shame on you for your lack of backbone.

Shame on you for your cynicism.

Shame on you for your patriotism.

This Is It

It's been a week, dear people, since I've updated the old blog. Since then, I've seen tens of thousands of migratory monarch butterflies clustered in a eucalyptus grove in Pismo Beach. I hung over a fence overlooking a narrow beach and the gleaming Pacific, watched fighting male elephant seals, mating elephant seals and brand-spanking new baby elephant seals near Cambria. I stood and watched with tears in my eyes as the sun sank below the horizon and threw the most incredible blues and pinks and oranges into the California sky. You should come out here and witness a California winter sunset. Trust me. I'll post pictures of the mini-getaway at some point, but you can also follow me on Instagram or even Facebook, if you don't already. I post a lot of photos there.

Here it is 2017, and I neglected to wish you Happy New Year's Day.

Happy New Year's Day!

I wanted to write but felt reluctant to share those glories without also sharing what seems to be an ongoing thing with Sophie. I keep hoping for things to get better, but they are not. I'm not sure what's going on. Sophie is not sick. She is not having more seizures than usual. She is just generally drained of vitality. I honestly don't know what to do and it's been my experience that when I don't know what to do, it's best to wait with an open heart and mind for direction. This does not mean that I am avoiding wise counsel -- that of doctors and otherwise -- but it does mean that counsel can come from unexpected places and that I have to get out of my own way to receive it. Does that make sense?

It's a weird thing to wonder if this is it. If my anger were a crow it would be circling round the neighborhood making a ruckus with its kind. Looking for trouble. It's going to piss me off if I have to actually watch Sophie decline. A murder of crows.

I'm tired of this. It.

Dr. Jin came to the house yesterday morning to treat Sophie. Dr. Jin is our Chinese doctor who we've consulted since I was pregnant with Oliver, sixteen years ago. I haven't talked to her in a year or so, and her name came into my mind when I was meditating one morning. She made a house call. She took off her boots outside of Sophie's room, tiptoed in and sat on the edge of her bed. She spoke softly to Sophie and to me, examined her tongue and felt her pulse. She treated her with needles and discussed some tonic herbs that we might try. She insisted that Sophie will get better and that she will help to bring her back into balance. I believe her. She reminds me without saying anything in particular that all I need to do is take care of Sophie. She reminds me of the honor it is to take care of Sophie, to take care of a fellow human being.

I am struck by the great disparity between the western medical world as I specifically know and perceive it and the healing that Dr. Jin brought to the house. I have a $150,000 EOB lying on my desk from the last time that I brought Sophie to the hospital to be treated. Most of that absurd amount will be paid for by private insurance and secondary Medi-Cal. We will not be bankrupted by that absurd amount of money, the services rendered arbitrarily priced by the faceless. As I type these words, the politicians of the Disunited States are debating the repeal of the Affordable Care Act which, if not exactly perfect, brought great peace of mind to our household at least in regard to finances. Healthcare should be affordable and accessible to all human beings in a civilized, wealthy nation. I believe it's a right. It's not, though. It's not even about healing, to tell you the truth. It's a business, another commodity for the rapacious capitalists to pick apart. I'm not sure the capitalists realize that the effect is deeply psychological. I'm sure they don't care.

I'm tired of this. It.

My son Henry got a tattoo yesterday. He's been bugging me about it for months. I told him that at 18 years, he's too young, that he might regret what he puts on his skin. In October he came to visit Sophie when she was in the hospital, hooked up to an EEG. He's the silent type. He peered at the video monitor and said, That's what I want for a tattoo.  We took a still photo of the screen, as angry as it looked. He didn't relent, and I finally caved. Yesterday, we drove to Flying Panther Tattoo in San Diego where I got my mermaid a year ago. Allison is a goddess mother/healer whom I met in the epilepsy/cannabis world. Her husband Rob is the artist, and he tattooed Sophie's brain waves onto her brother Henry's arm. #radicalspecialneedssiblinglove.

I am still reeling from it.

It.

THIS is it.

It's NaCaGiMo, Folks! Day 10

I've been veering all over the place -- despair to anxiety to "power to the people" enthusiasm and resolve and then back. In keeping with NaCaGiMo, though, I'm going to tell you that I feel the most panic when I think about what might (and probably will) happen to those of us dependent on disability-related federal subsidies. I'm talking the Affordable Care Act and it's dismantling, what it means to Sophie and her "pre-existing condition." The amount of stress -- both emotional and financial -- that our family and millions of others had before the ACA was PTSD-inducing, and it looks like we're in for another round of it. I'm talking SSI and IHSS, and the various services that many families of children with special healthcare needs and disabilities depend upon for not just their quality of life but also their existence. We had actually made progress the last eight years, and now it looks like it'll be ripped away, systematically. I got a grim reminder of how it happens yesterday as a job I had -- acting as a peer reviewer for a federal grant -- was suspended late in the afternoon. I needed that job, and I'm certain that those who wrote the grant proposals needed that money. It's started already, and if the past is any indication (the 8 years under Bush), anything related to caregiving and the disabled is the first to go on the chopping block. One of the first things that Obama did when he took office was to lift the ban on federal funds for embryonic stem cell research. At the time I was working on a national collaborative team trying to improve the quality of healthcare for children with special healthcare needs (with special effort toward closing the equality gap for the disadvantaged), and the relief was palpable, not just for the medical professionals but also for families who have children with genetic conditions and serious life-threatening illnesses. I'm thinking of the prospect of a Chris Christie in a cabinet position, a man whose draconian stance on medical marijuana could actually kill children and adults who need it. During his short presidential campaign, he vowed to go after those states that had legalized marijuana and turn the clock back. 

I'm going to be honest and admit to my fear, even as I don't despair. It's a matter of principle, I think -- the fact that the Republican party, a majority of white people, INCLUDING WOMEN, put this creep of a man into office and acquiesced to the assholes that will surround and advise him. We need to all WAKE UP and fight back.

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.

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.

Cannabis Oil Questions Answered #3

How does Sophie take Charlotte's Web, and how much does it cost?

A lot of people don't realize that Charlotte's Web is a tincture with an olive-oil base and that it's easily drawn up in a small syringe and placed in the mouth. It tastes like olive oil with a faintly bitter tint, but I'm what you call a super-taster, so I imagine Sophie doesn't taste much of anything. The doctor recommends that it be given with either avocado or full-fat yogurt, but we don't always do this, either, as it's given three times a day, apart from Sophie's other medications. She gets it in the early morning, in the afternoon when she gets home from school and then around 10:00 at night. For the last dose, she's usually sleeping, but we're able to get it in her mouth without waking her up, and I've perfected the art, even, of getting her to swallow by rubbing her throat lightly or the sides of her face. I know that people give the medication through G-tubes, too.

As for cost, currently we pay $.05 per mg. I am averaging about $300 for a one-month supply. I know that's a lot of money, but to put it in perspective, I currently pay nearly $200 in co-pays for Sophie's medications, not counting the pharmacy deductible, and that's with private insurance and secondary Medi-Cal. Some of you long-time readers know that my co-pay for Onfi was nearly $500 a month until I got it from Canada for $61 and then found a non-profit foundation that picked up the co-pay. When we finally shed our abysmal Anthem Blue Cross policy and added Sophie to our Health Net plan (thank you, Affordable Care Act), we had to pay a slightly higher deductible, but they added Onfi to the formulary and picked up a greater portion of the Onfi cost (still hefty at $70). I pay $100 co-pay for the Vimpat. And we can't forget that those drugs do nothing for Sophie's seizure disorder, have horrible side effects and are a hellacious pain to wean.

I think I've said it before, but there's not much that I wouldn't do to come up with the money to pay for Charlotte's Web, given that it has cut Sophie's seizures down by more than 95%. You can go with that where you will.

Questions?




Other Cannabis Oil Questions Answered:

# One
# Two

Smells Like Bullshit, Round 4,567,893

I used to regularly do a Smells Like Bullshit post, back in the days when George W was at the helm, and it was near impossible to spend a day without catching a whiff. I've done less ranting and raving on this blog to some of you's delight and haven't really engaged with any conservative trolls in ages and ages, mainly because it's pretty boring to listen to rants and raves from whatever viewpoint you espouse. I'll admit to always having what might be called a problem with authority that hearkens back not as long as my childhood, as I was quite a good girl back in Mid-Century Times. It might have started when my 35 year old boss at the retail brokerage firm where I was working advised me to take on the railroad companies and I said NO! and he said Don't you think we know best what's good for your career? and I said, NO! and quit my job right there, packed up my little photos and African violet and objets d'art from my desk, turned off the gargantuan computer and walked out the door. True, I became a waitress at a restaurant on Music Row and was later trained as a cook by a wife-murderer on furlough, but I didn't respect his authority, either, and I would have been hard put to come up with entertaining stories about utility companies and the craven men who worked in the corner offices of that company, anyway.

Anywho.

My first impulse this morning when I read about the Supreme Court rulings (both the Hobby Lobby and union ones) was f!#*k the Supreme Court. I've always hated the word supreme anything. I like even less the phrase the law of the land which apparently means less and less in this godforsaken primitive country anyway. It's the law that women govern their reproductive rights, their bodies, their health. Isn't it? Apparently not. Screw all the fundamentalist Christians who believe their right to practice their religion trumps a woman's right to get appropriate access to medicine and treatment. I imagine the legions of crafty women who shop at Hobby Lobby making little rubber Jesuses fly around on dinosaurs at this point and their husbands coming to pick them up afterward with machine guns slung over their shoulders, the better to protect them from the likes of us. What kind of name is Hobby Lobby, anyway? Is this a joke? The Supreme Court and Hobby Lobby sounds like a new Taco Bell menu item and definitely smells like bullshit.

The Anthem Bonfire Party

February 1, 2014

Dear Customer Service,

I have made repeated attempts to get in touch with you regarding my daughter, Sophie XXXX's  Anthem Blue Cross membership, but I have been unable to get through to a human for some time. I understand how busy you’ve been with changes because of the Affordable Care Act, and I am taking this opportunity to inform you that Sophie will no longer be a member as we have decided on a different and better health plan for her and for our family.

Please cancel Sophie XXXX's membership. Her ID number is XXXXXXXXX.

I will also take this time to let you know that our affiliation with Anthem Blue Cross has never been anything but a frustrating nightmare, that you have caused great anguish and stress for our family over the past decade and that we are beyond thrilled to be rid of you. I can only hope that your company will learn to be as ethical as you are profitable, but I imagine these are high hopes, indeed, and I don’t pretend that a small customer like ourselves will make much difference leaving your business.

Sincerely,

Elizabeth Aquino

What I look like when I'm on hold with Anthem Blue Cross during its death throes

So, a while back I posted what I look like while I'm on the phone with Anthem Blue Cross and eating a breadstick instead of smoking a cigarette. You can refresh your memory here. Today, I tried for the fifth time to contact Anthem in order to remove the automatic withdrawal of Sophie's premium from our checking account. I'll remind you that the evil and disastrous Affordable Care Act (that's sarcasm, there) enabled us to finally add Sophie to our health plan, and in doing so we are getting an entirely new health insurance plan with  entirely better benefits with an entirely different company for an entirely better price. Sophie used to have her own plan, an abysmal one, whose premium had been jacked up over 100% over the last few years and was diligently removed from our checking account by Anthem each month. The rest of our family had a separate individual policy with Anthem, equally as abysmal with an even greater rate of jacked-up premium, and we paid that one by check each month.

Anyhoo.

I've been trying to cancel the automatic withdrawal of Sophie's payment for weeks and have not been able to get through to a customer "service" agent. When I was connected to a human service agent -- ONCE -- I was sent on one of those hellish odysseys through the windowless warrens of Anthem and finally landed behind door number 6,345,876 and told to hold. Again.  The picture above was taken during that hold time, and in lieu of a bread stick, I kept a pen in my mouth and rolled its smooth, cold chartreuseness in my mouth while listening to many, many bars of a requiem that I imagined was for the death throes of Anthem and its connection to my family. My normal appreciation for classical music reached a breaking point, though, and when a voice finally broke into some seventeenth century dirge, it told me that due to the Affordable Care Act, we are unable to help you with your problem. Please call back at another time. In lieu of chewing on pens or smoking bread sticks, I went for the rectal Valium that Anthem has so kindly allowed us to purchase at a reasonable price.

Just kidding. That would have been an unauthorized usage of a powerful narcotic. We prefer weed over here.






To make a long story short, I have contacted my bank and put a stop to the automatic withdrawals that way. On February 1st, when the new policy goes into effect, I will be walking through the streets of Los Angeles with a burning blue cross. If anyone would like to join me, please do. There will be bread sticks and rectal Valium.

Morning Light

I'm doing the final filling out of the new health insurance application, and we're actually changing providers! We're paying a bit more but getting vastly different coverage, can also drop Sophie's measly plan, add her to ours for the first time in nearly a decade, have her prescription drugs covered at a reasonable rate and feel a modicum of ease that if any of us should have the barest hint of illness or disease, we won't go bankrupt paying for medical care.

I am so excited about cutting off Anthem Blue Cross and switching providers. I might have a bonfire and burn something in effigy!

Please stay tuned for the festivities planned. All suggestions welcome.

Things to Think About

Last night, I joined Tanya Ward Goodman and the poet Helena Lipstadt for a reading at a very cool independent bookstore in Echo Park. A small, intimate crowd came, and we sat outside in a funky light-stringed courtyard behind the store. I can't tell you enough good things about Tanya's book Leaving Tinkertown, and even though I've read it in different incarnations over many years, it's still a thrill to hear her words. Helena is a new friend whom I met in my new writing group, and her poetry is so intelligent, lyrical and powerfully erotic. I read a few of my How We Do It posts and realized as I was doing so, that they might make a book if they are strung together in some skillful way. I need to get on that.

Other thoughts today concern my struggles with obtaining a better health insurance policy, how I'm realizing just how insidious the tentacles of the Insurance Industry really are --at least for those of us in the independent market. A few years ago, when the whole healthcare reform movement began and the rumblings started about Obamacare, I wrote of how ridiculous it would be to "shop" on the free market for healthcare. You can read about that here.  I'll give you a moment, because it's pretty prescient, if I do say so myself.

Are you back? What I'm finding is that while I can certainly add Sophie to our individual policy  because the ACA has done away with the preexisting condition clause, the drugs that she takes are not on the formularies, and I'm terrified that we'll have to go through some crazy labyrinthine system to get those drugs covered. If you can recall from my Canadian drug mule days, we finally found a non-profit foundation that picks up the co-payment of one of those drugs, but the other one is equally expensive and was only covered after months-long wrangling with the insurance commissioner and my local congress person. For those of you who have written me with the suggestion that Sophie go on Medi-Cal, well, she is, secondary, and those drugs are not picked up by them either.

Hey, like The Tan Man says, The United States has the best healthcare delivery system in the world.

Why the hell do we not have a single payer system? Why the hell is socialized medicine a less attractive alternative to a plutocratic system?

What a clusterf#*ck.

I'm also thinking about the Congressman from Virginia who was stabbed by his mentally ill son who then shot himself and died. Evidently, the son had been admitted for mental health treatment earlier in the week, but a bed wasn't available for him.

Again, let's recite the powerful Tan Man's mantra:

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

That being said, Michael Tomasky has a great, brief piece on how the Affordable Care Act addresses mental health coverage for the first time in history. You can read that here.

Finally, ya'll might want to come on out and visit the estate sale of Dr. Arnold Klein, the dermatologist who worked on the face of Michael Jackson. He lives in my neighborhood (the fancy part), and evidently his estate will be liquidated over the next four days. Rumor has it that an extensive collection of Star Wars memorabilia, as well as Picassos and other celebrity crap will be auctioned off. There's a line snaking out the door as I type.

Good Lord.

Reader, what are your thoughts today?

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.

Where parenting, politics, disability, poetry and politics intersect

So, yeah, go ahead and complain to me again about a (temporarily) glitchy website. Fact: many historic American achievements have been preceded by mistakes far more harrowing than a flummoxed website.

Bob Cesca (read the full article, here) 

In all this talk of miracles and healings, with postings of poetry and naked dancing, I haven't spoken too much of politics lately, except for the occasional jab at the difficulties we are facing in the epilepsy community with getting medical marijuana for our children and the draconian federal policies governing it.

So, where's the politics at a moon, worn as if it had been a shell? Now's the time for those of you who abhor them to click off, drop away, go back to your peaceful day. I'll give you a sec.




Peaceniks and Tea Partiers gone?

OK.

I want to talk about healthcare and the Affordable Care Act or Obamacare, particularly all this brouhaha over cancelled policies and the POTUS lying about it and the government comin' between me and my doctor (thick southern accent here, please) talk, etc. etc. First of all, there aren't many people who supported healthcare reform who weren't disappointed in how the Affordable Care Act shook out. Those of us in the individual insurance market who had any sense at all were perfectly aware that the Obama administration compromised mightily with the insurance industry in order to satisfy not only that Evil Empire but those who rattled their sabers about socialized medicine, about the slippery slope to European style government and hell and damnation. The Affordable Care Act was a HUGE compromise and far less than the universal coverage most of us on the "left" had hoped would happen. I perhaps cynically don't believe that real universal coverage will ever happen in this country because we're not sophisticated enough, as a rule. I'm in the group that believes the ACA made some monumentally positive changes, though, that will improve the lot of tens of millions of people, including our family.

Yes, we were one of those families that got the letter from Anthem Blue Cross stating that our policy would be terminated as of January 1st, 2014 because it was out of compliance with the law as outlined in the Affordable Care Act.

Let me translate that for you:

We at Anthem Blue Cross will no longer be able to provide you with one of the shittiest, most expensive health insurance policies that we offer because if we do, we will have broken the law. We can no longer deny that you add your epileptic daughter to your policy. We can no longer cap out our expenditures in the event another member of your family develops a disease or has an accident warranting millions of dollars of healthcare. We can no longer deny coverage for preventive care. We can no longer force you to pay ever-increasing premiums that buy you catastrophic health care ONLY. In fact, this shitty policy for which you've paid tens of thousands of dollars over the last nearly twenty years of your life only proved to us that you were as stupid and lemming-like as we could have hoped at the time. That time, sadly for us, is over. BUT, we're happy to inform you of your other choices, which might cost you more but be of improved value. 

Now, I'm as nervous as the rest of you, but I've been on the California website and have figured out that our family might qualify for a federal subsidy so that our monthly premium won't be as high as it is now. I've also figured out that if it is higher than what we pay now, it will be far more comprehensive with far more choices, and most importantly of all, Sophie's shitty policy can be cancelled and she can be added onto our own. I still think the Evil Empire (insurance companies) make out like thieves, and I still believe universal healthcare should be the rule of the land, but anything, anything is better than what we have now, and the ACA appears in many respects to be an improvement.

Now, I'm tired of typing. Read this article.

Tell me what your experiences have been.

Sister Mary Elephant

When I was a little girl, my father's sister Gilda died, and my cousin Philip came to live with our family in our small house in New Jersey. I don't have much memory of how that worked out initially, other than that he set up a very cool bedroom for himself in our basement filled with teenage boy stuff and posters. I cringe now to imagine how awful it must have been for him to have lost both parents before he was even into his teenage years, how he lived with three little girls in a different town from the one he grew up in, how he went to a new school and then eventually moved with all of us down to Atlanta, Georgia in 1973. Atlanta, Georgia in 1973 was a very different city than the one that exists now, and I have strong memories of feeling foreign, like a stranger, not welcome but chided for not automatically saying yes, ma'am or no, sir to my teachers at the local public elementary school I first attended. My parents eventually put me into a very exclusive private school that, for the first few years, made me feel even more foreign. Most of the kids that went to this school were from, I guess, what you'd call The Old South. Most were very wealthy, lived in grand neighborhoods surrounding the school and, it seemed then as a painfully awkward adolescent, had no exposure to people like myself -- a half-Italian nerdy girl from New Jersey who couldn't catch a ball or run fast or do anything, really, other than read books really fast and make stellar grades. Did I mention it was miserable? It was miserable.

So, this morning, forty years later, as I drove up 6th after dropping Oliver off at school and headed toward the big baking goods store to pick up supplies for an upcoming order, I listened to the news, the dominant theme being, of course, the pending shut-down of the federal government. I listened to some of the blowhards from Congress talking about Obamacare and how it must be repealed to save us from certain disaster, and then I listened to the report of the opening of California's exchange tomorrow (I've already visited and it looks promising for our family!) and then I listened to some poor soul in Nevada who is looking to extend her unemployment benefits because she can't find a job, but the systems in place to help her will surely go down tomorrow if the blowhards in Congress get their way and then I thought again about my cousin Philip in the paneled room off our den in our house in Atlanta. I thought about his record collection while the voices of the radio droned on and I navigated the hundreds of orange cones on Venice Blvd and then pulled into the parking lot of the baking supply store and navigated through a film set in the parking lot, the voices still talking and talking. Suddenly, Cheech and Chong's voices came into my head, some album of Philip's that was mildly inappropriate for the time, mainly because Cheech or Chong made fun of nuns -- was it Sister Mary Elephant? -- and I heard them talking in my head, right over the thick southern drawl of some conservative Georgian talking about Obamacare, and what they said was:

Classsssssssss! SHUT UP!

Thank you.





Listen to Sister Mary Elephant here.

Meteors, Dyslexia, Tea Baggers and Lemonade

So, it's Sunday. I read about meteors flying over the mid-West, and Ted Cruz, the heinous Tea Bagger senator from Texas who won't give up his paycheck if the government is shut down but thinks it's all right that 800,000 soldiers will have theirs frozen. I fostered a pretty spirited debate on Facebook about the merits of the Affordable Care Act, and how it's going to help so many of us despite its problems. I feel nervous that the Tea Baggers are going to prevail and wish they'd all calm down and let the reform play out. I'm weary of the people who constantly whine about how our political discourse has disintegrated and wish they'd stop whining and say something in addition to how our political discourse has disintegrated. And yes, I'm perfectly aware that it's the Tea Party and not the Tea Baggers. They'll always be tea baggers to me, and I don't give a damn if it's offensive.

 Oliver is outside hawking lemonade again and cupcakes, this time, in an effort to raise money for fishing supplies and the Epilepsy Foundation of Greater Los Angeles. I had a talk last night with a friend's boyfriend who told me about his fascinating youth, growing up in Nebraska, how he was always in trouble, on the road, really, to jail,  his unruly behavior in part due to what was later determined to be dyslexia. It all turned out fine -- more than fine -- and that turning out happened when he learned of his strengths, not his deficits, when his mother persevered, when he made drastic and dramatic changes in his life. I'm reading a book by Ben Foss called The Dyslexia Empowerment Plan, and it's illuminating. Sometimes, when I read Foss' descriptions of himself in childhood, I feel as if I'm reading about Oliver, and little by little my gut instincts about my remarkable child are affirmed. When Oliver was young -- let's say three or four -- he was already such a pistol, as my father would say, that we would shake our heads and laugh, ruefully. A neighbor who has a powerful job in publicity once told me that she is always nice to Oliver because one day we're all going to be working for him. The book is not about overcoming learning disabilities but finding one's strengths and recognizing that dyslexia -- disability -- is just part of one's identity, something to accept, to almost embrace. Simple -- but radical -- stuff.  I think, sometimes, that part of my job with Oliver is to literally get him through school and out, to support him in whatever way I can and to guide him to constantly see his strengths and pursue them.

I price my lemonade at $.75. he says. Because most people will give me a dollar and tell me to keep the change.

So, Ted Cruz? Overcome him like a disease. Oliver? Help him to accept his dyslexia and discover his strengths.

What's up with you, Reader?

Project Access Learning Collaborative: A challenge

So, I'm feeling bright and chipper, a far cry from my earlier-in-the-week self when I nearly died on the airplane coming home from a business conference. I swear it wasn't hyperbole, either -- I must have had some sort of near-deadly 24-hour virus.

Anyway.

I work part time as a Parent Lead for a group that participates in a collaborative called Project Access. Teams from across the country, funded by grants from the federal government, participate in unique projects to improve the access to and quality of healthcare for children with special healthcare needs. Project Access works on quality improvement for children with epilepsy and their families, and these teams meet three times over the course of the grant, all together, to identify and work on strategies to not only improve care for children and youth with epilepsy, but also to foster the spread and sustainability of their efforts beyond the learning collaboratives as health care reform evolves. Each team is required to have parent and youth participants who are equal and integral partners, and my job is to help ensure that the parent and family voices are heard (I also do a fair amount of talking myself, as you well know!).

Here's where YOU come in.

Do you remember the astounding Spice Island Queen, the medical student who asked those of us with children with special needs for OUR OPINIONS? The post was titled Blog Call, and the response to this wonderful doctor's request for our help in guiding her as she continued her residency in Pediatric Neurology was enormous. If you didn't check back and read the comments that poured in after that post, please do -- they're all quite moving and very powerful. I knew that it was going to have to be my presentation at the collaborative meeting, so I asked my friend Cara's thirteen year old daughter to help me make a Power Point out of it and a subsequent conversation that I had with the Spice Island Queen -- a true collaboration. I think I can honestly say that my presentation, and the Parent Panel that came afterward, made up of several of the terrific parents on the teams present with our wonderful leader, Christy, was the hit of the two day brainstorm. If I knew how to post a Power Point slide show, I would, but I don't, so I won't.

But enough self-congratulation. I also want to highlight parts of the conference that drew my attention, in particular, and ask YOU, once again to help in our spread and sustainability efforts. If you find these interesting (and I know many of you will), please check out the links and send them to others in your circles.

Next week, I'll post the first of a short series of highlights of the conference and the work of the teams.

Carry on, Readers, with your own work! I have some exciting news that I'm posting later today!