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.

DIY EEG

Alley behind Trader Joe's, La Brea

After delivering the lecture to end all lectures about everything I do for you, realizing all the while that when it's over 100 degrees outside, we're all a little irritable and therefore maybe I should just shut up, I ran out of the house and into my sexy Mazda and made a run to Trader Joe's where I bought what they all godd**n needed, and when I was paying, the cashier picked up the dark chocolate bar with hazelnuts and suggested that next time I make a cup of coffee, I should drop in a square of that chocolate and stir it around. Do it yourself, Mocha! he winked and he smiled and I smiled and then I took the alley way home and snapped that photo of a seemingly abandoned wheelchair facing what looked to be an artfully decorated junkyard. For a split heatstroke second I considered lifting it into the back of my car and bringing it home. Velcro straps, I thought, maybe a good cleaning? and then I came to my senses and pulled over only to take a photo, noticed the elephant roaring behind it all, thought about elephants in the middle of rooms, the unbloggable, long memories. Earlier today I was talking to my friend Jenny who asked how the EEG went last week, and I told her that due to the usual clusterfuck of insurance issues, we had to put it off. I was supposed to call the insurance company yesterday and request that they make it an exception and put the provider in-network. I was supposed to call the nice person who read my blog the other day when I talked about this, who happens to work for an EEG company and perhaps could help me. I was supposed to do both those things, but I let Monday pass, given the heat because I just couldn't do it, didn't have the patience or strength.and I let today pass given the heat because I just couldn't do it, didn't have the patience or strength, so I told my friend Jenny that perhaps I should do the EEG myself!  I screamed, A DIY EEG! and we continued to laugh. So, there's plenty of laughter, albeit the heatstroke kind, delirium from being too hot, but not the right kind of hot, elephants in the middle of rooms, wheelchairs in alleys and do-it-yourself EEGs.

How We Do It: Part XLVIII

It gets better.

Me

Sophie was scheduled for an ambulatory EEG this afternoon at 3:00. It's been on the books for about a month, but I haven't been thinking about it because I hate the whole process. The ambulatory part is a godsend -- no hospital! -- but there are all the leads, the stinking glue, Sophie's curly, curly hair, the clean-up, the smell and, of course, the significance. Sophie has always had an abysmal EEG -- the kind of EEG that is, frankly, pretty hopeless. She's probably had at least ten in the last nineteen years, most of them in-hospital. Every single one is wildly abnormal. I won't give you the jargon. She hasn't had one in three years, though, and we thought it was time, particularly given the dramatic reduction in her clinical seizures since we started giving her cannabis oil. Yesterday afternoon the lab called to say that the insurance company claimed Sophie wasn't a member, so I went into my clipped and efficient mode and got that ironed out (our id number was transcribed wrong). This morning, I got a call from the EEG lab with the news that they are Out-of-Network for HealthNet and that we would be subject to the 50/50 rule after the insurance company pays the usual and customary rate. How much is that?, I asked. The financial person told me that, historically, insurance companies have determined the cost to be around $120, so I would be reimbursed for 1/2 that or $60. How much is the EEG? I asked. She said, Around $1700 or so. There is no other ambulatory EEG facility in the area, and MediCal is not contracted with them either. My options at this point are to admit Sophie to the hospital for an overnight EEG (out of the question), pony up and pay (the usual choice that has strained our finances for nearly twenty years), or appeal to HealthNet and request that they pay the in-network rate (throw my head back and laugh maniacally). Reader, if you're still here, please scroll up to the video that I posted at the top and forward to :23 seconds, maybe one of my favorite scenes in the movie, when Benjamin tells his parents that he's getting married, and Mrs. Braddock throws her head back and screams the most fantastic laugh you'll ever see on film. I am Mrs. Braddock, and that's what I do in my mind whenever I have situations like this EEG one. I no longer feel stressed, to tell you the truth. What might have caused me to weep copious tears, to tear at my hair, literally, to feel the poison of anger and adrenaline coursing through my veins, has disappeared. Mrs. Braddock enters my mind, and I throw back my head and let out a screaming laugh. After nineteen years, I'm here to tell you that it gets better. That's how I do 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

Clusterf*$%kery, part 4,345,678

Despite all the recent excitement with the press beating on my door as I attempt to muddle through the clusterfuckery that is The Cannabis System, we need to get back to our regular programming. I just spent the last 15 minutes on hold with Medi-Cal and then 45 minutes in conversation with a very helpful, very clueless gentleman at Medi-Cal. You might wonder how someone can be both very helpful and very clueless? The ability to hold opposing thoughts and ideas in unison -- equanimity, if you will -- is a skill I've perfected over the last couple of decades (ok, to be honest, it's only happened in the last five years or so), as is the very careful walking of the tightrope, swinging from the trapeze and other grand carnival acts.

So, you can take my word that the gentleman I spoke with on the telephone was very helpful and very clueless.

I called because as of February 1st, Sophie was added to our health insurance policy (Healthnet), and we dropped her Anthem policy. Sophie also has Medi-Cal, which is secondary to her private insurance, but at present, Medi-Cal is LINKED TO ANTHEM. I called Medi-Cal (my fifteenth attempt, I should add) to ask them to:

1. Drop Anthem Blue Cross 
2. Add HealthNet
3. Link Medi-Cal to HealthNet

My aim is to ensure that when medical claims are filed with HealthNet, Medi-Cal picks up the uncovered stuff, LIKE IT'S SUPPOSED TO.

Well, the helpful but clueless gentleman informed me that I needed to fill out form -- let's call it AGNES because I don't want to stress you out further with the amount of numbers I'd have to type out to indicate which form -- proving that I was indeed authorized to act as Sophie's conservator. In other words, since Sophie is over 18, her privacy is protected and Medi-Cal can't authorize the release of information. If you remember the other, now distant clusterfuckery that was gaining Conservatorship, I am officially Sophie's conservator (in addition to being her mother). God forbid this sort of snafu should have been taken care of back then with the Social Security office. He very helpfully directed me to Form AGNES but upon perusal of it, he decided that it was maybe Form GLADYS that I needed. He then directed me to Form GLADYS, and we both realized that Form GLADYS was actually the wrong form, so we moved on to FORM MILDRED after he checked with someone.  

Form MILDRED it is, and I was instructed to fill it out and send to the address at the bottom of the form. I said, There is no address at the bottom of MILDRED, and he said, Oh. Let me go and see where you send her. 

And I said OK and then I did a little pirouette on the high wire and smiled down at the admiring crowd. When the helpful but clueless man came back on, he gave me an address and thanked me for my patience. I now must fill out MILDRED, send her to Sacramento, hope that she is received and processed, upon which I will call back Medi-Cal to request that they do Numbers 1 and 2 above.

Did you get that?

I'd really, really appreciate if you, dear Reader, moved that net right under me as I do believe I might be plunging to my death at any moment.