Rhetorical Questions, Part 465,789 with Photos

1. Why is the process of finding, paying for and getting a wheelchair-accessible vehicle so labyrinthine?

or

        Why is the process for finding, paying for and getting a wheelchair so labyrinthine?

2. Why does the potential advent of Clobazam Oral Soluble Film not excite me?

or

     Why does the potential for an easier delivery of Onfi (that's clobazam) -- likened to a               dissolving postage-stamp sized film -- make me die a little inside.

Jimi Hendrix Acid Tabs
image found on the interwebs

(HINT: It's not because of Jimi Hendrix or LSD)


These are rhetorical questions.


3. Why are we able to launch a rocket into space with a luxury car inside of it?

or

       Why does this make me feel weary?

Elon Musk's recent venture

4. Why do we still have to pierce the skin with a primitive needle to get to a vein yet are able to inject a nuclear substance into that vein which will then carry it to the brain where it will light up metabolic pathways and provide information?

Vintage photo of brain imaging equipment

5.  Why did Sophie's most recent bout of seizures stop when I gave her a double dose of cannabis medicine, yet the Powers That Be maintain it has no medicinal benefit?


These are rhetorical questions.

Tiny little mother minds™ ask none but those.

Rain, The Minotour, Mrs. Braddock's Laugh and What's Baked

Raindrops on roses
and echeverria
Dear, dear Jesus
thank you for rain 
and the plumeria.



Do you remember The Efforts To Acquire The Chariot and then Busgate? In a nutshell, it took about eighteen months and some serious Insurance and MediCal wrangling to get a wheelchair for the girl (because, you know, I might have been making up her disabilities and trying to acquire a $10,000 piece of metal for the hell of it), and then too many IEPs and phone calls to LAUSD that brought to mind an episode of Monty Python to get a lift bus for her. Sophie is supposed to have been riding in her chariot on a lift bus for, basically, years, but it wasn't until this week that one mysteriously arrived at her school. I got a call on Tuesday afternoon from her bus aide, Saint Charles, at about 3:30.  The lift is broken, Charles reported, we're going to be late because we're waiting for a mechanic. I threw back my head and laughed, Mrs. Braddock-style (watch this scene, if you don't know what I'm talking about). God, I love that scene. How about her psychedelic shirt, Mr. Braddock's robe, his drink, the half-baked comment -- hmmm, I digress. I told Charles that rather than wait for the LAUSD bus system mechanic (visions in my tiny little mother mind™ of The Man Behind the Curtain in Oz pulling all those levers to get the bus mechanic ), I would drive over to Sophie's school and pick her up myself, so by the time I got there, picked her up and brought her home it was about 4:15ish, and just an hour after she had been dismissed. At 5:30, the telephone rang, and when I picked it up, the Efficient LAUSD Robot said, This is a call from the LAUSD bus system. Your daughter PAUSE Soooophie is on a bus that will be approximately 75 minutes late.

Go back to that link of Mrs. Braddock's fantastic laugh.

Today, the lift bus pulled up while I stood at attention on the sidewalk and then waited as The Busdriver did some kind of maneuvering inside, walked to the front of the bus and then down the stairs and came out. I told her that I didn't think the lift would clear the curb, that she would probably need to back up to the driveway, so she stood and stared a bit and then walked back to the bus, shifted it into reverse and backed it up. The beeping sound emanating from the bus was so loud that I had to cover my ears. When the bus driver climbed back out of the bus to deal with the lift, the beeping continued, and as the lift lowered, I saw that Sophie had startled into a seizure so I asked the bus driver to please turn off the beeping sound and simulataneously put my hands over Sophie's ears to muffle the cacophony. I also noticed that the bus has a name, and it's Minotour. You can't make this shit up, as my old writing instructor used to say. The letters, spelled exactly like that, are right above the door. Now, I am prone to metaphorical flights of fancy, as you know, and I know you lovely Readers are, too. Let's have a game about a bus named Minotour.

Give me what you got.

The Chariot Has Arrived

After more than seven months of considerable wrangling, Sophie's Medically Necessary Wheelchair Chariot has arrived, and it is a piece of art! We are very excited to have this piece of equipment in the house and loathe, actually, to send it off to her school. On other fronts, we still don't have a wheelchair bus, so we would have to transport it back and forth which will be problematic given its size and sophistication. The alternative is to keep this one at home and bring in her more and very used stroller for school use. She has an adaptive chair at school as well, and given the few hours she spends there, I'm leaning more toward using the wheelchair at home. It even has a tray where we can put toys and her iPad and food. I'm very grateful that this came through -- kudos to Anna and all the hard-working folks at NuMotion who had to make so many phone calls, fill out so many forms and just generally advocate for us over nearly half a year.

On yet another front, there's not much movement, yet, going on in Sophie's intestines. She's resisted the Magnesium Citrate and only mildly responded to the Miralax. I did a little research last night on the Interwebs and had a eureka moment when I read about people using cannabis successfully for things like Crohn's disease and irritable bowel syndrome, when diarrhea is a problem. Then one of my blog friends privately emailed me with the question about cannabis and digestion, and I hypothesized that perhaps over time, the Charlotte's Web has slowed Sophie's already slow digestion. I spoke to the pediatrician about this, and she agreed and suggested that she hasn't been drinking nearly enough, either, to keep things moving, that after a period of time without drinking nearly enough, you almost lose the mechanism that tells you you're thirsty, and then you don't have the impulse to drink and POW -- the cycle begins. It all makes sense to me, now -- she just hasn't been drinking nearly as much, particularly during the last few months when it's been the hottest and driest. That, combined with the decreased mobility (her norm), low tone (her norm), the slowing side effect of cannabis (new) and seizure medications (her norm) got her into a bit of trouble. We've got a plan, now -- Miralax every day for a week or so before reconvening. The plan gives me some peace of mind, but even Oliver said with considerable rue that he regrets how irritated he felt with Sophie over the last few weeks as she moaned and groaned and obstinately resisted drinking and sitting. I hate to say it, but what can you do? If I lived in medieval times, I'd walk with the flagellants, I guess, do some sort of penance for my human weakness. Instead, I'll chalk it up to nineteen years of dealing with other shit (like the procurement of chariots) that has taxed my stamina and made me very, very weary.

High Time, About Time, Good Time

The Shepard Fairey mural at the end of the Trader Joe's Alley
La Brea and 2nd

Sophie's wheelchair approval went through, and the chariot has been ordered. Since it began its journey to us back in April, I have no idea when it'll land, but hopefully before Sophie demands some new and more exotic transport.

It's high time.

We're still waiting on paperwork for the ambulatory EEG, and I'd be lying if I told you that I haven't put much effort into making that happen because -- well -- I'm tired of doing it.

Good time.

Right now, I'm patiently coaxing fluids into Sophie as she is on some sort of liquid fast. I have no idea what that's all about, would like to imagine she's protesting some injustice somewhere in the world, but in the meantime, you do what you have to do. That means lying on my side and putting the sippee cup to her lips every ten seconds and then pulling it away before she throws it away.

If I did, it'd be a good time for a high time.

Reader, how was your day?

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!

Poetry of the Bureaucracy

Good News

We got the ccs denial
We'll go back to mcal with the denial
So we can get approval
Because mcal deferred the original request
We have only 30 days to respond
To that deferral.
It's past 30 days
We need to submit a whole new request
to mcal
Half-way there
Have a good day.

-- Elizabeth Aquino

via an email from Anna of Bohemia

I went on a walk this morning and listened to poetry the entire way, looked up into the sky and saw those trees you see above and blue. When I got home I opened an email from the people who are managing the wheelchair issue that I've alluded to in previous posts. The woman who wrote it, Anna, has been very helpful, and her last name reminds me of something Bohemian. What she wrote was as illuminating as any poetry which means light through cracks and all that.

The Best Thing About This Post is the Book Angel Food***

Question of the Day:

When does being patient mean you're being an asshat and actually need to be impatient?

This morning I did the usual scanning of the headlines, not stopping at the inferno in Gaza, the contemplation of bombing northern Iraq, the alleged beheading of children in Iraq by ISIS with their heads on sticks, the drought in California, the increased security at USC due to the recent murder of a Chinese student -- shall I go on? I honestly didn't read further, but I did laugh aloud at an Onion headline and article that reported on a new Glaxo medication for people who just feel weird. Maybe we should just read the Onion and call it a day every day. I was thinking about people who don't "believe" in global warming or who continue to water their lawns into emerald greeniness in defiance of water restrictions here in southern California. I wondered if these kind of people just have an earlier snapping point than those of us who kvetch about global warming, feel dread about impending catastrophe, buy sulfate-free shampoo and eschew toxic laundry detergent and dishwasher soap. This isn't a judgement of them, just a wondering. This morning, as I showered in my Barbie bathroom, I looked up and noticed the paint peeling at the top of the tile which made me think that it had been a while since I'd wiped the ceiling there with bleach or Clorox and it probably harbored all kinds of mildew and bacteria, invisible to my eye. I don't think I ever think about cleaning or laundry or household tasks without thinking about environmental poisons, and then I feel not just exhausted but like an elite idiot who has way too much thinking time on her hands. Just freaking clean it with the toxic stuff, I thought, what does it matter? We're all doomed. Maybe the reason why some people don't believe in global warming is because they've just reached that breaking point a tad sooner than I. Or maybe not. Maybe they truly believe that God did indeed give us dominion over the earth and we're in charge. Or maybe they're just stupid. That was a judgement.

I've already done a bit of back and forth with both the neurology office and the company that is ordering Sophie's wheelchair, and it all calls for patience. Evidently, MediCal stops at Sophie's epilepsy diagnosis and wonders why she can't just be plopped into a regular wheelchair (the kind that elderly people order at airports to take them to their gate) so we can all call it a day. What is the medical necessity of this ordered wheelchair with its positioning and shoulder straps and what, exactly, are her disabilities beyond the seizures and severe developmental disabilities, including no self-awareness, no protective safety reflexes, being non-verbal and cognitively delayed (yes, we have the medical report from the neurologist, but it's not enough!)?We need more documentation! We need more paper! Patience. Patience. Patience. I shall be patient, even as I strain to show impatience. 

The Onion might have a headline like this: Woman Orders Over-the-Top Wheelchair For the Hell of It With Plans On Pulling One Over On Medi-Cal for Each of Her Children. She Also Submitted A Request for a Winged Chariot.

I feel weird today and should probably take one of those pills that Glaxo is selling.

***If you peer up at the left-hand corner of the photo above, you'll see a copy of my friend Brittany's novel Angel Food, open to its last pages. I will write a review of this crazy, beautiful, rocking book soon, but until then go and buy it here. It's definitely the best part of that scene photographed above -- the papers, the papers, the papers.