Late Afternoon Saturday Conversation Between a Man and a Woman Lying on a Bed*

Woman:

Listen to this. JFK during his presidential campaign wouldn't let Sammy Davis Jr. near him because he had married a white woman and he didn't want the southern segregationists to be offended.  Then later, Sammy Davis Jr. switched parties with Sinatra and embraced Nixon -- can you believe that? Literally hugged him.

Man:

I was never into Sinatra. F*^k Sinatra.

Woman:

I know, but Sammy Davis? 

Man:

F*&k Sammy Davis.

Woman:

Did you hear that in Florida, teachers can be armed inside of elementary schools?

Man:

F*^K Florida.

Woman:

My God. This story about Kelly joining the board of the company that runs those facilities that house unaccompanied minors -- the migrant children thing -- did you hear about that? 

Man:

F*^k John Kelly.

Woman:

I think I'm going to be sick. These might as well be concentration camps! The biggest one is in Florida! They've received and will continue to receive hundreds of millions of dollars in federal contracts! It's taxpayer money! My god! It's like a concentration camp! 200 beds in a room to house the older teenagers! The workers claim that the kids think of it as a "slumber party!" What is this? What is wrong with these people? What is wrong with Kelly?

Man:

F*^ Kelly. F*^k Florida.

Woman:

What is wrong with this country? Between that evil guy from INSYS found guilty for racketeering in the opioid case  -- the same company that derided me and my colleagues at an epilepsy event when we participated on a panel about cannabis medicine -- the same company that is busy pushing opioids and developing a pharmaceutical grade CBD -- and yesterday's 2-hour unsuccessful battle I had with Blue Shield of CA who's decided to deny coverage of Sophie's IVIG until further"review" -- well, my god. 

Man:

Take notes. Write about it.








* The man quoted in this post is the kind of man who almost never uses curse words. The woman quoted consistently rants and raves, peppering her language frequently in those rants with curses.

Amusing Health Insurance Anecdote of the Day: Matchmakers

Old Lady Sophie

Sophie's estimable private health insurance company, Blue Shield of California, has been sending out a number of "helpful" missives in the last month. Today we received a notice that as a PPO member, having a PCP means you have a doctor you can turn to for healthcare advice -- whether it's preventive care, treating common illnesses and injuries, or help determining if you need more specialized care. The letter then politely continues to explain why Sophie received the letter and what else she might find enclosed: a list of members covered under your plan and each member's PCP match. Your PCP match was based on factors such as where you live, your age and your primary language. I scanned the rest of the page's verbiage that I've read quite literally hundreds of times, partly to stave off what generally ends in some nightmarish proposal for rate increases or claim denials, and partly because there's always some fodder in them for the old blog. I was pleasantly surprised to see that this time, Blue Shield of California had indeed made a match for Sophie and the match had a telephone number with an area code quite close to mine. Sophie needs a general internist, so I considered it serendipitous. I have an open heart and the hopes of flocks of birds.

Reader, I looked him up.

This doctor's specialty was GERIATRICS. In fact, he is a prominent geriatrician who has been in practice for over 45 years. I am now wondering what sort of algorithm was used to make this match. The tiny little mother mind™ is thinking all sorts of funny and probably to some of you, sad things, but mostly she's shaking the damn head that holds her that she fell for this gesture of humanity from an American health insurance company.  The last line of the missive was this: We hope that you take advantage of the opportunity to build a lasting relationship with your PCP. 

Yours in good health.

Bless their hearts.

Sophie B. vs The Great American Healthcare System, Part 1,000,000, ROUND 1

July 4, 2018
Ambulatory EEG

Let's make this a series.

ROUND ONE TIMELINE:


July 3, 2018

Sophie B. (Plaintiff) was "hooked up" to an ambulatory EEG in Neurologist's office.  Plaintiff went home with hook-up and video camera for overnight observation of brainwave activity.

July 4, 2018

Mother/Conservator Elizabeth A. removed electrodes from Plaintiff's head and returned "black box" to Neurologist office. Because it was a holiday, Mother/Conservator had no expectation for quick reading. Mother/Conservator reports that after two decades, she has no expectations at all.

August 23, 2018, 3:00 pm

Mother/Conservator picks up Plaintiff from adult day program and notes Plaintiff's difficulty breathing. Day program assistant reports Plaintiff had difficulty eating lunch and swallowing. Plaintiff's lips are slightly dusky in color. During entire ride home in Los Angeles traffic, Mother/Conservator pounds back of Plaintiff and encourages coughing and swallowing. Mother/Conservator contemplates bringing Plaintiff to emergency room but is persuaded by own inner compass and more than two decades of experience that no good will come of entering hospital emergency room. Instead, Mother/Conservator makes another of what has been multiple calls to Neurologist office for nearly two months regarding July 3, 2018 ambulatory EEG reading. Mother/Conservator has heated discussion with nurse at Neurologist's office demanding that she should get the EEG reading, that Plaintiff is suffering, that something is wrong. Neurologist gets on phone, admits that July got away from us and assures Plaintiff (whose tiny little mother mind™ wonders if August got away from them, too?) that EEG will be read that afternoon and that he will call Mother/Conservator that night. See Appendix A.

August 23, 2018 4:00 pm

Mother/Conservator arrives home with Plaintiff and proceeds to remedy problem of excess mucous and choking. She is helped by Caregiver and stabilizeS Plaintiff who falls asleep.

August 23, 2018 8:00 pm

Mother/Conservator receives phone call from Neurologist who expresses shock that Mother/Conservator was "right," that Plaintiff is indeed having recurrence of ESES, a rare epileptic syndrome that Mother/Conservator has suspected Plaintiff of having but has been repeatedly told by several Neurologists over two years that its recurrence is unlikely. Mother/Conservator goes into full dissociative mode while on telephone and intelligently discusses former incidences of ESES, the treatments for said incidences and otherwise directs Neurologist to treatment modality that was successful previously. See Appendix B and Appendix C.

Dissociative mode gives way to extreme distress and mental suffering of Mother/Conservator, attributed to decades of experience dealing with this shit, grief over Plaintiff's ongoing struggle and suffering and anticipation of forthcoming battle to get treatment for Plaintiff. Given experience, strength, history of mindfulness meditation and love and support from immediate family members, Mother/Conservator puts on big girl underwear, girds her loins and otherwise readies herself for the fight.

August 31, 2018

After multiple calls with Neurologist office to "check" on status of IVIG treatment (see Appendices A and B for clarification), Mother/Conservator is directed to Home Health Agency nurse who says that "this is not approved by the FDA as a treatment for epilepsy, so insurance will deny it." Mother/Conservator corrects Home Health Agency Nurse that the treatment is actually FDA-approved but is considered "off-label" for ESES treatment and that she is aware of possible denial. Mother/Conservator informs Nurse that treatment has "worked" for Plaintiff twice before and was partially covered by Insurance Company after some "wrangling." Nurse agrees to "write up" notes as dictated by Mother/Conservator about past history of treatment with IVIG. Nurse tells Mother/Conservator that she will "get back" to her after the holiday.

September 3, 2018 10:00 AM

Home Health Agency Nurse calls Mother/Conservator on telephone while mother is riding in car after dropping Plaintiff off at adult day program. Health Agency Nurse asks whether you might want to be more comfortable at home receiving information. Mother/Conservator tells Home Health Agency Nurse that she is fine using the Bluetooth option on her telephone in the car. Mother/Conservator wonders in her tiny little mother mind™ whether the Health Agency Nurse thinks she might have an accident when she "receives the news." Mother/Conservator finds this humorous and assures Home Health Agency Nurse that she can take it. Health Agency Nurse says that Insurance Company has declined the doctor's prescribed IVIG treatment for Plaintiff for what Mother/Conservator hears as blah, blah, blah, blah, blah. Health Agency Nurse states that an appeal will begin with Neurologist perhaps joining the appeal and personally speaking to Insurance Company chief doctor who has made this decision. Mother/Conservator listens carefully and says indeed. She can't recall whether she said, of course! or is there anything I can do to expedite this process so that my daughter can get treated for her ESES? Her tiny little mother mind™ wonders how many people are employed for this tomfoolery and thinks of some suitable imprecations, directed today toward Supreme Court Justice nominee Kavanaugh who, if confirmed, will most surely make Plaintiff's life and millions of others more miserable, particularly in regards to healthcare. Mother/Conservator doesn't share the inner workings of her tiny little mother mind™but rather reminds Home Health Agency Nurse of Plaintiff's secondary Medi-Cal insurance. Home Health Agency Nurse reports that the Medi-Cal office worker in Home Health Agency will begin to look into Medi-Cal coverage, now that Insurance Company has issued a DENIAL. Mother/Conservator finishes conversation pleasantly by remarking how frustrating this all is for everyone, even though inside she is dying, her tiny little mother mind™ shrunken, her girded loins gaping, her big girl underpants riven.

ROUND ONE:

Sophie B vs. The Great American Healthcare System

WINNER: The Great American Healthcare System
LOSER:    Sophie B.

Appendix A:

Mother/Conservator reports that Neurologist is wonderful in every respect, so while she is frustrated and upset over the delay in the reporting of the EEG results, after more than two decades of dealing with this shit, she is cognizant of Neurologist's time constraints and being stretched too thin. She assures Court that she'd rather deal with a Nice Neurologist Who Works With Her than an Asshole Neurologist, the latter being the norm and with whom she has had plenty of experience. Mother/Conservator also assures the Court that she is well aware of The System and its shortcomings, that she has worked most of her adult life in it and to improve it, that her efforts haven't amounted to much of anything but that she has virtually kept her daughter alive and sometimes thriving in spite of it.

Appendix B:

2005: Parents of Plaintiff (not yet Conservators because Plaintiff is a minor) are given "three choices" of treatment when Plaintiff is diagnosed with rare syndrome ESES (diagnosed only after Mother insists on hospitalization of said Plaintiff, given drastic decline in Plaintiff's physical abilities with no urgency to attend to this decline by Neurologist at time). Choices will be designated "Door Number One, Door Number Two, and Door Number Three" in keeping with Mother's dark, albeit sustaining, sense of humor.

Door Number One: High dosage steroids
Door Number Two: Valium
Door Number Three: Intravenous immunoglobulin (IvIG)

Mother chooses "Door Number Three" and treatment commences in hospital. After some "wrangling," private insurance company agrees to partially pay for ongoing treatments over the next six months in Plaintiff's home. "Wrangling" should be noted as "understatement" as Mother is left depleted and experiences considerable signs of post-traumatic stress syndrome, triggered by repeated "wrangling" in previous decade.

"Door Number Three" treatment of IvIg restores Plaintiff's brainwave activity to previous "normal" dysfunction and Plaintiff recovers.


Appendix C:

2011: Plaintiff has occurrence of ESES and is prescribed "Door Number Three" again, given its success in treating previous incident of ESES. Insurance company denies treatment but is eventually warned down by repeated calls from Mother, one of which includes a threat to hospitalize Plaintiff so that treatment can be initiated in hospital, requiring Insurance Company to pay. Insurance company agrees to pay for treatment, treatment is administered and Plaintiff recovers.

The Samsara of Healthcare

I was scanning through some old posts from a few years ago and noticed one that is particularly relevant -- STILL -- to today. It has to do with government and entitlements and the ongoing threat we face from Republican economic policies and a culture that is all too willing to sacrifice the vulnerable while exalting the already fortunate.

I don't know what to do about this and feel not so much defeated as overwhelmed with the ongoingness of it. I'm currently working with a health insurance broker trying to figure out our 2018 health insurance options as our current plan raised our premium by 39%, making it unaffordable. The capitalists love to talk about "consumers" going "shopping" for health insurance, and "competitive rates," etc. -- all that market talk, reducing us to numbers. I can tell you that scrolling through plan benefits, trying to figure out what coverage would be for Sophie's various needs, reduced me to tears, and I'm no wimp.

I maintain that access to affordable healthcare is a right. I maintain that we shouldn't be looked on as consumers when we access healthcare. I maintain that shopping for healthcare insurance is ridiculous, that despite my college education, formidable intelligence and decades of experience navigating all the systems of care, I am literally overwhelmed by it.

What, really, do I know with my tiny little mother mind™?

If there's anything to substantiate the Buddhist notion of samsara, I guess it would be this.

Here's the post from a few years back, and the article that I referenced in the first paragraph could just as easily be replaced by any number of articles and notices in today's newspapers regarding the threats to Medicare, IHSS and SSI under the current Republican tax reform proposals:



I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.

There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.

What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence  to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.

First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.

I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.

What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.

Orgasms for Caregivers, Part 1 in a Series*

When the insurance company denies a claim for a drug that your daughter has been on for nine years (in its liquid form) and suggests (via its Pharmacists and Physicians Panel) switching to the tablet form of the exact same drug for coverage (in a form letter that you imagine is a sort of MadLibs), and your neurologist's office has a DESIGNATED PERSON who does the appeal for you.






















* In addition to the afore-mentioned orgasm, this action on the part of the DESIGNATED PERSON is also filed under Inadvertent Ways of Apoplexy Avoidance Of Caregiver

"Your 2018 health plan information is coming" and it's MAGA!

So, I got a missive from Anthem Blue Shield last week that I opened with a sinking feeling. Those of you who know that despite living in the land of "the world's greatest healthcare system," having individual insurance is a clusterfuck of gargantuan proportions. This has nothing to do with the Affordable Care Act, other than its concessions to private health insurance companies. That's a whole other post, and you know where I stand, anyway. #singlepayerforall

No communication from Blue Shield is met with anything but dread, despite their polite and even cheerful marketing efforts.

Here's the latest:

First of all, "Here are a few things you can do now to get ready" ?????!!!!!

Here's how I'd rewrite the three suggestions and then add a fourth:

1. Be on the lookout for two separate mailings: one with your 2018 plan information and one with your 2018 rates. Make sure you review all the information but only after going FIRST to your freezer, pulling out the frozen vodka and taking a couple of shots. This is particularly important for the envelope regarding your new rate. 
2. Visit our friendly website and take notice of its new look -- all the models are preternaturally beautiful and multi-racial. In fact, they are actual customers of ours, particularly pliant conservative Americans who've bought into the notion that medicine is a business and that we're in the best position to dictate how the whole shebang is run. They're so snowed that we killed them off with their permission and replaced them with look-alike robots. In lieu of increased rates, you'll see that you, too, will be given an option to be killed instead and replaced by a beautiful person in any race you choose. Think about it! After all, the stress of the increased rates might kill you anyway, so why not be preserved in service of other good Americans who "don't want the gov'ment messing with my healthcare!"
3. Mark your calendar with these important dates! October 2017: Start drinking a lot of frozen vodka. November 2017: Open enrollment begins! Remember the option of being replaced by a smiling cyborg as opposed to having your rate increased! December 2017: Get ready for the coming year's continued clusterfuck at increased prices if you choose to stay with us. January 2018: You're either dead from the stress of your rate increase and the knowledge that you'll be fighting tooth and nail for every single claim or are on your way to eternal life, via Trump's Department of Health and Human Services where you'll spend a little time with those members of congress who continue to seek the repeal and replacement of the ACA. You thought they were real? They're dead, also, and will show you what it takes to become soul-less.
4. Start stockpiling that rectal valium because you're going to need to have rectal valium parties where you charge the party-goers in order to pay for your health insurance. You'll need it as well if you decide to go the cyborg route because it hurts like hell to become a conservative and start ripping people off, lying and prevaricating about what you're actually doing. But be heartened by the end result: you'll be dead, re-fashioned and making America great again.

How You Can Save Medicaid (#Itsbeggingtime)

So last night, I stood on the steps of Los Angeles' City Hall with hundreds of people for a rally to support Planned Parenthood and women's health.

This morning, as you know, the Senate Republicans unleashed their vile version of TrumpCare, or the Ass Hole Care Act.

You know how I feel about repealing the Affordable Care Act, and I'm not going to rant about the horrific effects its repeal would have on me, on Sophie, on her father and on her brothers. Suffice it to say that it will be catastrophic.

"The defining feature of the Senate Republican health care bill is that, over the long term, it would absolutely decimate Medicaid—more so even than the House legislation passed last month. And it accomplishes this wrecking job with surprising efficiency, a mere six lines of text in a 142-page document."

from, Here are the six lines of text that could decimate America's biggest healthcare program 

As my friend Jeneva Burroughs Stone wrote so eloquently, "The cost shift here (to us) would be antithetical to the notion of American self-sufficiency and individual independence because the end result would be to bankrupt citizens, such as Roger and myself when our only "crime" against the State is giving birth to a child with disabilities."

That statement holds true to the majority of people whom I know who have children with disabilities. It also holds true for those who are caring for aging relatives or for those with chronic disease. 

You can help, particularly if you live in a state with Republican senators. Please help us.

Here's a script for when you make your calls. 


All information, plus numbers and action items is taken from Indivisible's guide to Stop Trumpcare.

#Resist

You're doing it for her and millions like her:

The Pursuit and Practice of Equanimity

Your daughter, no stranger to bouts of weirdness that she ultimately recovers from, is acting very weird. She is not having any more seizures, per se, than usual, but she is very weak and doesn't want to walk and you held her in your arms exactly like you would an infant today and fed her a sippee cup of juice, sip by sip. She has no fever. She has no cold. You have run through the possible things wrong, and these include viruses, brain tumors, autoimmune diseases, broken necks or backs, severe pain, and, of course, Just Plain Old Fucked Up Epilepsy Shit. You said a few prayers before remembering that you actually don't believe in prayer, other than as a form of meditation and you do believe in meditation because it has, quite literally, saved you from insanity during the other bouts of weirdness your daughter has had over the last two decades, unlike prayer which has always had a desperate quality to it when you do it and a treacly, insincere, I don't know what else to do for you except pray sort of quality when others do it for you (with some notable exceptions from some truly holy people you know). Since the last time your daughter had a significant bout of weirdness (October is the cruelest month, contrary to the poet's dictum), and you landed up taking her to the hospital where, basically, nothing happened or was learned by the Powers That Be* over the six days you were in the hospital with your daughter and then you were sent an Explanation of Benefits by the Supreme Powers That Be** that amounted to $140,000 To Find Out Absolutely Nothing But That Your Daughter Has A Hospital-Acquired Urinary Tract Infection And Is Indeed Suffering the Toxic Effects of Vimpat Confirming The Mother's Tiny Little Mother Mind,™ you make the decision when you're not praying/meditating that you will not bring your daughter back to the hospital. You want everyone reading this who is not a doctor to not look on this as medical advice, but everyone reading this who is not a doctor should know that your lack of sense of urgency co-exists with a supreme panic and is the result of more than twenty years of doing this shit and meditating. Hence, equanimity.

Even the title of this post is a nod to equanimity as you just can't, no matter how hard you try, pursue it.

* The Neurology Community

** The Health Insurance Industry and Medical Industrial Complex That Has Now, Apparently, Taken Full Control Of the Disunited States or Drumpfland.

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.

Smells Like Bullshit, Episode 45,678,982

Unless you've been living under a rock (and I've said it before, I understand), you've seen the various articles coming out at least once a day regarding radical price increases of popular pharmaceuticals. Most recently, there's the Epi-Pen story with its handsomely paid CEO, daughter of a Democratic congressman, and today's selection was about pharmaceuticals that treat inflammatory conditions, including arthritis. You can read about that right here and then come back to hear what the tiny little mother™ mind thinks about it all.





(this blank bit of screen has subliminal messaging because I'm a bit of a conspiracy theorist and tremendously biased)













Are you back? I was going to make this a Facebook post but then got carried away enough to realize that my blog was a perfect place to rant a bit, especially because I so rarely do that anymore. That was a joke. I'm thinking aloud here, typing so fast my fingers are a blur (I scored very very high on finger dexterity when I took a comprehensive test back in the last millennium a skill that comes in handy for a number of things that I won't elaborate upon here), but it will help me to get it out of my system so that I can go back to my day with a modicum of sanity. You know, finish the housework, navigate the systems of care for Sophie, coax Henry along the college application process and remain level-headed while shopping at Target for shorts with Oliver.

Anyhoo.


This is mainly what I want to say about the continued clusterf**k that is Big Fantastic Pharma and Big Grandiose Private Health Insuranceland or The Big Big Medical Industrial Government Complex (I sound a little like Drumpf now, don't I?) as far as it relates to Medical Marijuana World. When this rant's finished, I'm going to fix it ALL. It's going to be GREAT.

Along with the EpiPen and arthritis drugs, epilepsy drugs have long fluctuated wildly in price -- a single dose of ACTH, the steroid routinely given to those with infantile spasms cost $154 when we gave it to Sophie back in the late 1990s. I believe it's upward of $16, 000 now, and that's not because of inflation. That's because of the mumbo-jumbo Big Pharma puts out -- you know -- the high cost of research, rising costs, blah, blah, blah, etc. Diastat, or rectal valium, an emergency medication that is now in generic form, has cost me as much as $1200 A DOSE and as little as $7.50. Long-time readers of a moon worn as if it had been a shell might remember my Drug Mule series when I chronicled what happened to the price of clobazam and how I gamed the system. I'll refresh you:

1. Called Frisium, clobazam was not FDA-approved when we first started using it. I paid out of pocket for it for many years, purchasing from a London pharmacy through a NYC pharmacy. Cost: $150 for a month supply. So, manageable.

2. Approved by the FDA and renamed Onfi, it was not covered under my Insurance Company's formulary and was priced at $1800 for a one month supply, 1/2 of which I was subject to, so that's $900.

3.  I was no longer able to get Frisium but located a pharmacy in Canada that sold clobazam (remember Onfi, Frisium and clobazam are all the same drug and close cousins to Klonopin, one of the most heavily prescribed drugs in the US of Opiate Addicts) for $60. It became illegal to ship the drug across the Border, so two friends of mine in the Movie Industry, on location, picked it up and ferried it back to me. This was legal -- well, sort of -- but not sustainable, and in lieu of flying up to Vancouver every three months (I contemplated doing this and making a little vacay out of it), I turned next to:

4. A non-profit organization on the east coast that helps people with certain conditions get drugs for free or at a reduced price. I should add here that the Magnanimous Manufacturer of Onfi offered to give me a coupon for 12 months that would have taken $50 off the $900 co-pay (similar to the Epi-Pen CEO's magnanimity in lieu of reducing her $5 trillion salary). The non-profit PAID FOR THE ENTIRE CO-PAY which was like manna from heaven. I just had to swallow the small amount of vomit in the back of my throat when I found out that the non-profit was largely underwritten by the Magnanimous Manufacturer of Onfi and GOT A HUGE TAX WRITE-OFF for their charity to folks like us.

Are you following this because those four points were really just illustrative and an aside. Here's what I want to say today, in reference to that New York Times article linked above:


Guess what else is a potent anti-inflammatory?

I'll give you a hint: The DEA recently confirmed its status as a Schedule 1 drug, along with heroin and cocaine, meaning it has no medicinal value and can't be studied except under the most draconian of regulations.

Are you following me?

I'm no conspiracy theorist, but I suspect Big Pharma is getting their ducks (or dicks) in a row as they scramble to research and develop their own cannabis concoctions. The fact that we can grow it ourselves and make our own medicine means no money for The Big Guns, so we must all be subject to the scare tactics of Big Government and Big Private Entities. Free enterprise, baby. Capitalism, baby. Let the Market Do Its Thing, baby.

Us? THC, baby.







P.S.
While we're smelling the bullshit, if you have arthritis and live in a state where you can get some, try cannabis. It's a potent anti-inflammatory. I am not a doctor, though, and have only a tiny little mother mind™so please consult yours and don't sue me.

The Quarterly Tiny Little Mother Mind™ Report

I rowed a boat through the shitty today to take Sophie to her quarterly Neurologist Appointment. We disembarked at the valet parking because the regular parking was full, but I had to get the wheelchair out of the boat, assemble it, put Sophie in it and then run through the rain to reach the tower where The Neurologist works. I felt distinctly out of sorts doing this, all grumbly and complaining inside my head about how much I hate this shit, this place, this life -- you know the drill. Twenty-one years. When I got to the third floor and wheeled Sophie past the Neurosurgery Department and then the CONQUEST sign in the neurology waiting room with all the MEGA DONORS MAKING A DIFFERENCE, though, I had already talked myself down. A guy was talking in an extremely loud voice across the waiting room to an older woman who also spoke in extremely high tones. They were sharing stories of misery. They were chuckling. They relaxed me, like magic. I waited in line to check Sophie in. Her wheelchair dripped water. She's a mermaid. The receptionist took our new insurance card and asked for a co-payment. Here we go, I thought. $70! she said cheerfully. I told her that Sophie had Medi-Cal secondary to her private insurance and therefore we shouldn't be subject to the co-pay. You're right! she said and peeled the sticker off the sheet where I'd signed. We waited only a few minutes before her name was called and then were ushered in for The Quarterly Taking of the Vitals. The new nurse rolled the digital blood pressure machine up to Sophie and spoke directly to her.

Give me your arm, please! she said.

I told the nurse that Sophie generally doesn't do things on demand and that she doesn't sit still with the digital blood pressure thingy on so it's impossible to get an accurate reading. I suggested that she get one of the old fashioned kind because that always worked best.

Apparently, I was invisible.

Or perhaps I had already slowly morphed into the body that houses the tiny little mother mind.™

Give me your arm, please! she repeated and then proceeded to wrap the band around Sophie's arm. I made some sort of lame attempt to repeat what I'd told her, but she had already walked away toward a computer where she stood and proceeded to ask me the questions that I wish were gold-plated into The System -- what medications is she on? how much is she on? how much does she weigh? She glanced at the blood pressure machine, frowned, walked over and fiddled a bit more with it. Is her blood pressure normally this low? she asked, and I said, No. She's very much alive, as you can see. She walked out and came back in with the old-fashioned kind.

We saw The Neurologist a few minutes later, a woman whom I greatly respect and even like. She asked me the usual questions -- how much medication is she on? how much have you weaned? how are her seizures? -- and I answered them. She raised her eyebrows when I told her how much less medication she was on, how we hadn't used Diastat in nearly two years, how the CBD and THC seem to be controlling her seizures despite this reduction in medication. I reported that Sophie was having some big seizures in the morning every few days and that I was going to adjust the dosage of her cannabis, but The Neurologist didn't ask me a single question about the cannabis. She asked me whether I would consider a consult for the ketogenic diet or the modified Atkins diet. I reminded her that Sophie tried the keto diet twice, that it didn't work the first time in the dark ages of the last century when she was an infant, and that the second time, in the dawning of the new millenium, it gave her impacted stool and turned her into a ravenous, pacing tiger and me into a traumatized, insane woman. I have no idea whether she knows that I am fond of hyperbole but there was none involved here. The Neurologist did acknowledge that she'd heard that story before, but she still didn't ask a single question about cannabis.

She did lay out on the table the possibility of the VNS. That's the acronym for the vagal nerve stimulator, and I've made it pretty clear about 4,324,569 times that we're not interested as it doesn't have compelling results. That's partly hyperbole and partly not.

IN TA RESTING.

I still really respect and like The Neurologist. I declined the VNS and didn't bother to share any more information about the cannabis. We commiserated about the maddening state of health insurance, and I warned her that Sophie's monthly supply of Onfi could cost me $3500 unless we did all the paperwork to ensure that it was medically necessary. The Neurologist wrote down the 22 drugs that Sophie had already tried, because the insurance company will inevitably insist that she be prescribed an alternative to the Onfi, and The Neurologist will have to make the case that she continue to be on this drug because we've already given the others a whirl. What we didn't discuss is that the only reason she has to be on this drug is because she is addicted to it and the only reason why we are weaning her from it at all is because cannabis medicine is helping her. But those are thoughts of the tiny little mother mind™ and don't need to be shared with the Great Minds of Neurology nor are they, apparently, of interest.

Anyhoo.

Sophie and I got back into our Sexy White boat and rowed through the shitty back home.

I'm here to tell you newbies that it gets easier when you allow yourself to feel the maelstrom of thoughts, the soaked to the skin despair and then watch them float away. Equanimity comes, eventually, even to the most feisty of us. Even to the tiniest of tiny little mother minds.™

Fight the Power as an Italian or at Least Wander Around It*

Italian anti-Fascist fighters, November 1944

Oh dear Lord. Please no one ask me what I think of the woman who identifies as a black person when, in fact, she's a white person. I just don't have it in me to join the discussion and will leave it to less exhausted finer minds than mine to figure it all out. I'm generally fascinated by these kinds of things, but lately I've felt nearly comatose and even bored when the newest wild story comes out. I know that says more about me than anyone else and is probably indicative of mild depression or at least a dissociative disorder, but it's the truth. I'm having a hard time not saying I don't care when people ask me what I think about anything these days. Ironically, one of the things I'll be working on beginning next week when I leave for my residency at Hedgebrook involves my own wrestling with identity -- both mine and my daughter's. Hopefully, I'll be out of this funk and able to organize my thoughts and care.

As I drove around the shitty this afternoon, listening to the interminable talk about the woman who identified as black but who was really white, I did think about my own ethnic identity -- how I'm one-half Italian, one-quarter Syrian and one-quarter Scotch English. If people ask me what I am, I tend to say Italian because I definitely identify more with my Italian ancestry than the Middle Eastern or northern European. I can't tell you why exactly, but I feel Italian. Yesterday's post provoked some really great comments, including Mary Moon stating that she'd heard Italians don't believe in God so much as God's mother. Ha! That's true of me!




I was also thinking about The Powers That Be today, mainly because I got a letter in the mail informing me that our insurance company, Assurant, will no longer be in the health insurance marketplace as of January 2016 so we'll have to start looking for a new individual plan in November during that open season which sounds like we're all going hunting (and wouldn't you love to hunt down an insurance company and hang it, stuffed on your wall?) but actually means you're allowed to enroll in a certain window. Insurance companies and the whole healthcare system in this joint are kind of fascist, don't you think? God, I wish I could say that I don't care, but I'm going to have to care and scurry around and do all the stuff that needs to be done, including making sure that Sophie's Providers are covered and that her drugs are covered and that we can afford the premium and it's all so exhausting and I just don't care.

On the other hand, I've been engaged with one of my favorite Realm of Caring people, Heather, on Facebook who has done an incredible amount of work with this medical marijuana thing. She's one of my heroes, to tell you the truth, and just a pleasure to know as a person. She's indefatigable -- probably not unlike one of those Italian anti-Fascist fighters even if she doesn't exactly identify as one. She shared my recent blog post titled Access Public Service Announcement where I took to task the head of the American Epilepsy Society who was just so dooooooown on that recent Dateline special. It turns out that I did a radio show back in April, and the doctor with whom I spoke was the very same one! You can listen to it here. She was equally as dooooooooown on the radio show, too, and Heather and I can't figure out why these people aren't more excited by our stories (Heather's son has been seizure-free with CBD for nearly two years!). I said would it kill them to express some enthusiasm and marvel a bit because they've been stymied so long? Then again, maybe they just don't care, and lord (or given my Italian identity should I say Mary) knows, I understand that.








*This post is a ramble, a wander and it might make no sense. Read at your leisure.

How Much a Chariot Costs, Apparently

Holy shit.

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?

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.

The House That Jack Built

This is the girl whose brain loves to seize.

This is the doctor who ordered an EEG
for the girl whose brain loves to seize.

This is the company who took the paper
from the doctor who ordered an EEG
for the girl whose brain loves to seize.

This is the company that denied the paper
from the company who took the paper
from the doctor who ordered an EEG
for the girl whose brain loves to seize.

This is the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the mother who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the clerk who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the other clerk who listened to the clerk
who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the mother all forlorn
who listened to the other clerk who listened to the clerk
who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the place that comforts with laughter

the mother all forlorn

who listened to the other clerk who listened to the clerk
who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

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.

Where I Am

from the movie Brazil

(on the phone with Medi-Cal trying to link Sophie's account with the New Insurance Plan)

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.