Stockpiling Medications

Planet Romanesco

Whew. It's been one crazy day, hasn't it? One thing I know for sure and that is that I feel as connected as I've ever felt to every single other human on this planet. My friend Kari wrote today that "our strength is in our compassion, not our fear," and that's where I'm cashing my chips, banking my bucks, paying the piper -- do you know how many idioms there are related to money? I feel as anxious as I've ever felt and much of it has to do with Sophie and her increased seizures and the same old feeling of no one knowing anything and so much fiddling with medication and cannabis and wondering if it's the moon or the weather or the virus or the general level of anxiety that is floating through the air picked up by those invisible antennae that shoot out from Sophie's addled and exquisitely sensitive brain. The Powers That Be recommend "stockpiling of medications" and this statement has made me fantasize about running into a CVS with a machete to grab all the bottles of Onfi and Depakote off the shelves, because for the life of me I do not know what it means to stockpile medications. Perhaps on the planet Romanesco?

Just yesterday I did a little dancing with The CVS Pharmacist and her Sanguine Pharmacist Technician. I'd gone to pick up Sophie's prescription for Onfi, the benzo that she has been on for much of her life but which does little to control her seizures yet to which she is irrevocably enslaved given its addictive properties, and the Sanguine Pharmacist Technician gave me only one bottle and then told me to speak to the pharmacist when I insisted that there should be two. The Pharmacist was extremely harried and quickly realized her mistake but told me that she only had one bottle, that she would have to order the other bottle and that it would come in on Friday, but because it had already gone through ("gone through" is one of those terms that professionals use because, after all, healthcare is a BUSINESS), and I'd paid $75 for that one bottle, I'd have to pay another $75 for the other bottle, the rest of the prescription. All because it had gone through.

Reader, are you with me?

As an aside, the retail "value" of one bottle of Onfi is $1,287 for a 23-day supply.

I promptly told her how absurd that was, that I shouldn't have to pay the penalty for a CVS Mistake and that I wanted the rest of my prescription as written. The Pharmacist looked at me, and then she looked at the line behind me of people stockpiling their medications and said, "You are right. I will write a fake prescription and your other bottle will be here tomorrow." My mind pondered the whole idea of a fake prescription but honestly, the tiny little mother mind™ was stretched to capacity, so I took her word and left the CVS with the one bottle of Onfi that had gone through and as I type this, a day has gone by so that I am happy to inform you that I did indeed pick up the other, the fake prescription and now have two lovely bottles of Onfi on my counter, worth approximately $2,574 and good to go for 23 days.

Bless all the people working in healthcare.

Our strength is in our compassion, not our fears.

May we all be well, happy and peaceful.
May no harm come to us.
May no difficulties come to us.
May no problems come to us.
May we always meet with success.

Sophie B. Vs The Great American Healthcare System, Part 1,000,000: ROUND 2

Article 1

Please See Round One Timeline HERE Before Proceeding and for Explication of Article 1, above. Note that I can get you a copy of the Explanation of Benefits, regarding this decision, AT NO COST, thanks to the Insurance Company, so email me if you'd like one.





Big Girl Panties ON?
Loins Girded?
Ready?

ROUND TWO TIMELINE:


September 4-6, 2018

Mother/Conservator makes repeated calls to Neurologist and Neurology Office to check on progress of Plaintiff’s appeal to get necessary IVIG treatment for ESES. Neurologist reports that Blue Shield of CA does not respond to repeated attempts to call. Plaintiff appears further weakened and distressed, drooling, difficulty swallowing and drinking. Mother/Conservator expresses distress and frustration, and Neurologist responds appropriately, assuring her that “we’re going to get this done.”

September 7, 2018
10:30 am
Mother/Conservator makes morning call to Neurologist for update on Plaintiff’s appeal to get treatment for ESES. Note that TWO WEEKS have passed since diagnosis was confirmed and order for treatment was made. Neurologist states that if his efforts to appeal to Blue Cross of CA are fruitless, he will admit Plaintiff via emergent care for hospital administration of infusions. (Mother/Conservator states that her own condition is extremely stressed out. She actually posted the following picture (Article 2) on her social media page but assures all parties involved that her rage as depicted in picture with weapon in hand is metaphorical.) 

Article 2

10:43 am
In the middle of Neurologist's statement that he will admit Plaintiff to emergent care for hospital administration of medication if he is unable to get through to Blue Cross of CA by end of day, Mother/Conservator receives a text message. Because of her finger dexterity (considered extremely high as measured by an expensive personality and skills test administered in the last century by a famous company) and multi-tasking skills, coupled with afore-mentioned extreme stress (which renders Mother/Conservator more like larger mammalian creatures on guard and extremely alert faced with threats to offspring -- think bear, moose, etc.), Mother/Conservator switches over to text messages and reads this (Article 3):

Article 3 with professional names redacted with quasi-religious symbols that were inserted by Mother/Conservator, despite her lack of religious faith

Mother/Conservator shrieks news of approval to Neurologist who is speechless, given that he has been unsuccessful in reaching Insurance Company. Mother/Conservator wonders aloud what the hell has happened here? Her tiny little mother mind™ is busy, busy wondering whether this weird and random event is somehow related to her blog post from the previous day and the many thousands of "hits" it has received, but her body, always many, many steps behind the tiny little mother mind™, feels a rush of adrenaline and she tells The Neurologist that she will hang up and call the Nursing Agency to make the appointments for Plaintiff to receive treatments. Because her body is in a riot, and her tiny little mother mind™ is busy, busy, Mother/Conservator does not remember how she hangs up from Neurologist but believes he asked her to let me know when Plaintiff gets her schedule of infusions.

10:45 am

Mother/Conservator calls Nurse at Agency who has texted her the GOOD NEWS (the lettering of which the tiny little mother mind™believes to be rather Trumpian and is amused by this and then quickly horrified because part of the extreme stress is due to the constant worry about the healthcare system and the steady erosion of what little benefits the Affordable Care Act has conferred upon Plaintiff and family and hundreds of families that Mother/Conservator knows, benefits which are under attack even as this is typed), and Nurse at Agency tells Mother/Conservator that just that morning, the Agency received a letter from Blue Shield of California with a reversal of former denial. See Article 4.

Article 4

Both Mother/Conservator and Nurse at Agency laugh incredulously at this seemingly miraculous turn of events and then move forward and set up Plaintiff's schedule for infusions immediately.






ROUND TWO:

Sophie B vs. The Great American Healthcare System

WINNER: Sophie B.
LOSER: The Great American Healthcare System and Mother/Conservator's Relative Sanity (See Article 5)

Article 5

Christmas-Time Caregiving Extravaganza

Hint: This isn't Sophie. Read on.

Suspense, right?

Sophie has been home from the hospital for a few days, but we're still recovering from the latest We Don't Know What's Wrong With Your Daughter But She Doesn't Have Pneumonia And This Will Cost Approximately $125,347, Part of Which Will Pay For The Care She Received At This Particular Medical Establishment But Mostly Will Go Toward Padding the Pockets of The Plutocracy or Terrible America.*

Here's Sophie in her nest:

Here's me, eating a spoonful of lemon curd, left-over from an order for a Gingerbread Forest Cake with Lemon Curd.**

Oliver had surgery this morning on his finger. He had a benign bone cyst that needed to be removed, so we rose earlier than the sun this morning and made our way to Santa Monica where the nice receptionist charged us $934.56 for THE DEPOSIT, and the nice Anesthesiologist and the nice Orthopedist and the nicest Nurses prepped Oliver for the surgery. He woke in the Recovery Area quite nicely, and in the car on the way home waxed rhapsodic about how his former fears for anything medical had disappeared and I often overthink stuff and am so glad to release these fears and thoughts. Honestly, Readers, it was like the usual fabulous Big O, without the EDGE. I'm contemplating a nice propofol drip for all of us.

Here he is in his nest:

His cheeks are not that full. He's just eating a bagel and watching something dreadful on Netflix.

In lieu of propofol, I'm continuing to eat spoonfuls of lemon curd.

*Terrible America is an apt expression coined by the great Rebecca L, poet extraordinaire. I think we can safely say it is a Terrible America that is run by a POSPOTUS and a repugnant political party that is actively supporting its sexual predator in chief as well as a pedophile Christian judge running for Senator of Alabama.

**Everyone Needs Cake™ is my new gig. I make cakes for people. I use the money I make to support the Medical Industrial Complex. Please help me to use it for shoes or make-up or something. I'm getting old and would love this really large cozy blanket I saw on the Johnny Was website.

The Greatest Healthcare System on Earth, Part 5,346,789,340

a scene from Brazil, the 1985 Terry Gilliam flick whose brilliant scenes prefigured my life by 3 decades

I opened an Explanation of Benefits online this afternoon and noticed that the cost of the bloodwork (ordered by Sophie's doctor to check whether or not she had an anemia  or something worse problem) was not covered by Assurant, our new insurer. I had specifically looked up and found an In Network Lab, which, according to my insurance company acumen, means there would be no charge.  On the Explanation of Benefits page, under the Remarks column, were the numbers

1001, *0204

I followed the little asterisks down the screen to the explanation for these groupings and read:

0204: This service/equipment/drug is not covered under the patient's current benefit plan.
1001: This type of service is not covered under the plan. Please refer to the certificate.

Oy vey, ya'll. You know what that means, right?

I called Assurance, was put on hold and then finally spoke at length to one of their people. She was patient -- I'd say robotically so -- and kept putting me on hold to research your problem. She came back to say that there were several problems involving erroneous coding from The Provider that neccessitate my calling The Provider, asking her to change the coding on the original prescription, then calling the lab to authorize said changes, then have the lab issue a corrected claim to the insurance company, and then for me to mainline some heroin. 

The Assurant agent also told me this:

We do not cover venipuncture.

I said, But you do cover bloodwork?

The Assurant Agent said, Yes, but we do not cover the venipuncture service.

In other words, I pay private insurance so that Sophie's blood may be analyzed in a lab for possible horrible diseases, but that private insurance will not pay for the means to remove the blood.

Help me Rhonda.

Dealing with The System and The Book of Change

I've started throwing the IChing these days almost daily when I'm stumped by someone or something. I'm not Nancy Reagan, who evidently resorted to divination as a way to advise her husband in world affairs (don't quote me on that, though), but I have to say that the principles of what Jung called synchronicity are wildly informative and resonate for me. The simple ritual of asking a question, throwing the coins six times and then reading the hexagram is enormously healing in this weird, can't quite put my finger on it way. How should I respond to all this vaccination hysteria, my own near-PTSD symptoms because of it and the obduracy of people who refuse to believe there is nuance in science and the American healthcare system?***

Someone suggested that it's in the raging waters that one finds the answers. That was a perfect response to my post the other day where I alluded to the witch hunts of the seventeenth century and the particular practice of throwing the woman in question into a raging river to test her faith. If she drowned, she was a witch. Evidently, God doesn't answer the appeal of a witch or a real witch wouldn't call on God.

I might be a real witch.

Remember when I told you that after dealing with The System for twenty years, I've learned to do one thing a day? Otherwise, I'd go completely insane and jump into the raging river rather than be pushed. Right now, my task is to get MediCal to cover Sophie's drug deductibles. Evidently, this should have been happening for about five years which might have saved me tens of thousands of dollars, but the process to figure out where the snarls are, what the hold-up is, who's in charge, for what and when and how -- well -- it was too much for my little brain. Last week, though, I had a breakthrough. The pharmacist did a little legwork and MediCal denied it because they needed more information. I got through to find out what more they needed. They needed a list of drugs that Sophie had been on to prove why she needed Vimpat and Onfi -- just in case her neurologist was only idly prescribing these drugs when there were cheaper ones to be had. On Monday, I emailed The Neurologist and asked her whether she could draft a letter stating Sophie's drug history -- basically proving it. I gave her a sample letter, just to help her out. Can you imagine how much shit these doctors have to deal with regarding MediCal and private insurers? On Tuesday I called the pharmacist to tell him to hang in there. On Wednesday, I paddled around in the raging river a bit. Today, The Neurologist emailed me the letter (which you can see above), attesting to the many drugs Sophie has been on in her life and the necessity for the two that she's on currently.

Tomorrow, I'm going to call in a refill for the drugs and see what happens. I know you're on the edge of your seat, Reader, so I'll keep you posted.

I'm wading in.





***Hexagram 64

Before the End

The accomplishment of a goal is in sight. It appears that long-impending matters may be brought to fruition with an acceptable amount of effort. Increasing clarity surrounds the meaning of situations once thought to be obscure. At the time BEFORE THE END there is great promise for the future.

A unique and sage viewpoint is present in human affairs. Order can be brought to chaotic situations. Because you are now unusually familiar with the elements involved int he object of your inquiry, you can evaluate and arrange them in whatever way necessary to achieve your aim. It should be a relatively simple matter to bring together groups of people in social or public-minded situations. By penetrating the psyche of each individual involved, you can arrange to gratify their needs within the group mechanism and thereby gain their co-operation....

Yet, it would be a mistake to imagine that by achieving your aim you will bring matters to a close, that good judgement and order will prevail. The time BEFORE THE END can be compared to a lengthy trek over a high mountain. At some point, before reaching the peak, you can see in detail exactly how much further you must travel. You will know what is involved in reaching the top because of your experience in the climb so far. However, when you do reach the peak, which has been in your sight for many long days of effort, you will have done only that. You will have acquired little information and no experience whatsoever about the descending the other side. To rush up and over the top in an overly confident manner could bring disaster.

...The coming situation will be strange to you in every way, unike any that you have experienced. In the near future you will not be able to draw upon the wealth of your acquired experience, for in many ways the time will be nothing short of a rebirth.

Disability/Healthcare Systems Equations in The Greatest Country On Earth

One arbitrary Medi-Cal denial form from months ago that isn't really a denial but more a shifting of benefits from one agency to another, yet neither agency knows which one

Call all these numbers. Be told to call back. Call another number. Be told a different number. Be told another number. Get through to recording. Be told that when your Medi-Cal identification has letters, in addition to numbers, this is what you do: Press *. Press key that has letter on it. Press number 1,2,3,4, for whatever position that letter might be, press rest of numbers and repeat previous instructions if another letter occurs, press #. Make mistake. Hang up. Start over. Get through and speak with telephone operator who can't help. Get new number.

The BIG FILE CABINET with twenty years worth of paperwork, roughly representing above factors times twenty (for years)

A tear-stained woman, clutching a mala in her teeth who has decided to let it rest for a bit since no one has answered her question.

Homeland Security Resolution, The Mad Hatter, Medical Marijuana, Guns, Vanity, Gay Teletubbies and Some Appropriate Cursing

So, it turns out that one of my wonderful readers and commenters works for Homeland Security, and she confessed to scrolling through my blog yesterday on her time off -- hence, the mystery is solved.

Dang nabbit. I was feeling all self-important.

Today, though, I am going to be photographed with Sophie for a newspaper article about medical marijuana in California. Late last night I confessed to another extreme parent who was on the East Coast (up with her child way, way past midnight) that I was terrified to be photographed lest I look bad or horrors upon horrors -- heavy. I hate that word, by the way, and have forced myself to say it. My friend S, despite the grueling nature of her day, her night, her life, actually, sent me the following photo of what I should wear:

That's called The Mad Hatter Costume. I laughed so hard I almost fell out of my chair. My friend also typed that she wished she had the wherewithal to be more publicly outrageous than she is, and that made me laugh hard as well. Given the circumstances, I wish that I were, too. The truth is that while I'm happy to be interviewed, happy to tell our story, fired up to advocate and help others who need this information, there's a certain part of me that's as pissed off as one can imagine -- or maybe not just pissed off but freaked out, overcome by absurdity. I'm angry that it took nineteen years to stop Sophie's seizures despite this plant being available -- with evidence that it might very well help. Let's call off the Jesus stuff and the miracles and the feeling all joyous and happy now that Sophie's seizures are reduced dramatically. I'm angry about the clusterfuckery that is the American healthcare system -- angry that people opposed reforming it, angry that it's still entirely inequitable, angry at the buffoons in my home state of Georgia who think it's oh so American to carry a concealed weapon around wherever you please but good golly miss molly not the evil weed! I'm angry that my friend from Wisconsin had to work her fanny off to get the almighty lawmakers to pass a bill -- last night! -- making it easier to get CBD for children like her daughter who has had seizures for a decade, part of her brain removed and countless meds poured down her throat yet my friends here in Los Angeles can suck on pot lollipops at hipster restaurants. And yes, I thinnk marijuana should be legal for even recreational use.  I'm angry that I'm nervous we might not have a steady supply of Charlotte's Web, that I'll have to grovel for it. I'm angry with Big Pharma, with The Man, with capitalism, with the Tea Bag Party and the damn libertarian ship it floated in on, with The Way Things Work. I'm angry with my anger. And I'm angry that seizures are so vicious, that they've damaged not only my daughter's brain and her quality of life but our family -- my sons, my husband, me.

Hell, I'm angry that I'm not still thin, too.






Well, damn this whole shebang. And my own vanity.

I'm wearing this: