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.

Drug Wars

I posted the above photo, innocuous enough, and told my Instagram followers that if such things turned them on, they should come over here and read this blog post or rant or whatever you might call the twenty-first year of wrangling with drug companies, pharmacies and insurance companies. I spent a bit of time today on the horse, trying to get Sophie's prescription of Vimpat refilled. I write a lot about the benzos -- Onfi, in particular -- but you might not realize that Sophie is also on Vimpat and has been since it was approved for use by the Almighty FDA in the fall of 2008. Yessiree Bob, as they say, and anywho. We slapped that drug on, along with the Onfi, numbers twenty one and twenty-two of drugs both approved and not-approved by The Almighty FDA and then spent the next eight years fighting for coverage by private insurance companies and Medi-Cal despite the grim fact that it doesn't really work. 

What does it mean when a drug given for seizure disorders doesn't really work?

It means the seizures don't stop.

Why, then, did you keep Sophie on that particular drug combination?

Because taking away drugs is a hideous process, and we had no other options. Oh, and because I used to listen to The Neurologist and do what he or she said with the exception of adding a third drug which I had earlier declared I would only do if Jesus Himself offered it to me. The Vimpat didn't appear to affect Sophie negatively, as far as we could tell (which isn't very far as she can't talk or express whether she's having any of the following:

Common side effects of Vimpat:

• Blurred Vision
• Dizzy
• Double Vision
• Feel Like Throwing Up
• Head Pain
• Throwing Up
• Uncoordinated

Infrequent side effects of Vimpat:

• Abnormal Manner of Walking
• Diarrhea
• Drowsiness
• Feeling Weak
• Involuntary Eye Movement
• Involuntary Quivering
• Itching
• Loss of Memory
• Low Energy
• Sensation of Spinning or Whirling
• Signs and Symptoms at Injection Site

• Rare side effects of Vimpat:

  • Atrial Fibrillation
  • Atrial Flutter
  • Atrioventricular Heart Block
  • Decreased Neutrophils a Type of White Blood Cell
  • Deficiency of Granulocytes a Type of White Blood Cell
  • Feeling Faint
  • Giant Hives*
  • Having Thoughts of Suicide
  • Increased Eosinophils in the Blood
  • Inflammation of the Middle Tissue Heart Muscle
  • Kidney Inflammation
  • Liver Inflammation caused by Body's Own Immune Response
  • Mental Disorder with Loss of Normal Personality & Reality
  • Multiple Organ Failure
  • Slow Heartbeat
  • Stevens-Johnson Syndrome
  • Suicidal
  • Toxic Epidermal Necrolysis
  • Abnormal Liver Function Tests
  • Aggressive Behavior
  • Anemia
  • Chronic Trouble Sleeping
  • Confused
  • Depression
  • Difficulty Speaking
  • Disturbance of Attention
  • Dry Mouth
  • Easily Angered or Annoyed
  • Feeling Restless
  • Fever
  • Hallucination
  • Heart Throbbing or Pounding
  • Hives**
  • Incomplete or Infrequent Bowel Movements
  • Indigestion
  • Mood Changes
  • Muscle Spasm
  • Numbness
  • Numbness and Tingling
  • Prolonged P-R Interval observed on EKG
  • Rash
  • Ringing in the Ear

Sophie has two different Vimpat prescriptions because she gets a smaller amount in the morning, so we try to keep the number of pills she has to swallow to a minimum AND avoid cutting pills into quarters or halves or other infinitesimal amounts. Today, when I went to pick up the refills of BOTH prescriptions, I was told by The Earnest Pharmacist (sigh, they're always so earnest) that Vimpat is a controlled substance, and they couldn't release it to me until Monday. I told The Earnest Pharmacist (bless his corporate heart) that I knew that because my daughter had been taking the drug for seven years (even though it doesn't fucking work) and then The Earnest Pharmacist said he would check to see whether if he over-rode that stipulation the insurance company would cover it, and I, of the tiny, little mother mind™ suggested that he give me three pills to tide me over to Monday and The Earnest Pharmacist said, Oh, no, I can't possibly do that and right before I morphed into Terms of Endearment Epilepsy Drug-Style Shirley MacLaine and banged on the counter, The Other Earnest Pharmacist looked up from her computer or little desk where she was counting out some other poor soul's drug and said, Oh, I can take care of that! Then I forked over my $120 co-payment that Medi-Cal is supposed to pick up but has mysteriously neglected to do so without the six thousandth prior approval.

Then I grabbed a bottle of cheap vodka from the liquor aisle and a bag of Cheetos and ran from the store to add to my stash of Vimpat that I am hoarding for thrills at home in the brown basket right next to the bottles of Onfi and the Lone Ranger cookie jar.







* The reason for this post has just occurred to me. Sophie has been getting hives off and on for a number of weeks. I have no idea why and am now wondering if it's due to the Vimpat? I had thought a drug rash unlikely when I first saw them, because drug rashes usually show up right after you begin taking the drug, and it has been over seven years, but --- well --- sigh. 
** See above.

Saturday Collage with Frida, Van and Oxford Health

I found my Frida Kahlo Frocks and Socks magnetic set in one of the drawers whose contents I am purging this afternoon. I also found Sophie's original health insurance cards which provoked a storm of reminiscing in my head about the events of June, 1995 when she was diagnosed. I might title that chapter The HMO: Part One In The Odyssey of an Unwitting Healthcare System Traveler, A Tragedy.  

Cast my memory back there, Lord. Sometimes I'm overcome.***

















*** from Van Morrison's Brown-Eyed Girl, easily one of my favorite songs and a line that comes to me at least once a day, but in this case, does not refer to making love in the green grass behind the stadium.

Jake From State Farm

So, in case you're not on Facebook, I thought I'd entertain you today with this photo of Oliver dressed for Halloween as Jake from State Farm Insurance Company.  I personally had no idea who Jake actually was until the boys showed me the commercial, but apparently, this costume idea and photo was tweeted by someone at Oliver's school (he takes a Science class at a small independent school) and Jake himself answered the tweet. Or re-tweeted. Or twittered. I evidently have a Twitter account, but I have no idea how to use it.

And, yes, the irony of having a child of mine masquerade as an insurance salesman is not lost on me. It's a beautiful thing.

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!