We Can Do Hard Things, Thursday 3/19/20

Hey, Reader, how's it going today? I confess to feeling an uptick of rage. It started about an hour ago when I heard about someone I know testing positive for the virus. (How are we going to write this word? Virus? Corona Covid? Covid-19? Should we be clever or ironic or matter-of-fact and terse? Maybe the uptick started last night when I went to bed and read a few emails from our old pediatrician's office. He's a private doctor who treats a lot of very wealthy families and celebrities. I "picked" him over 23 years ago because he was willing to work with my babies' vaccination schedule given Sophie's seizure disorder and the suspicious way it started. That's another story and we sure as hell aren't going into that now. I'm telling you this so you know why I took all three of my children, through their childhood, to a ridiculously expensive pediatrician. Don't get me wrong. I love the man and his staff.  Fortunately, we made very few visits to the pediatrician, but I can honestly say that in nearly every single instance,  I spotted a familiar golden face.



You know what? Forget this story. It's about self-tests for The Virus, how they were available for $250. How as soon as the newsletter went out, first come, first serve, another newsletter arrived and all the tests were gone, accounted for, paid for, etc., as if those tests were toilet paper, frantically purchased and hoarded.

Capitalistic concierge medicine.

My uptick of rage is related to my son announcing that several Lakers have The Virus or have tested positive, and I've been reading accounts from FRIENDS that they haven't been able to get a test despite having symptoms of  The Virus. So, all I'm going to say about this is the same thing I've been harping (that's a fine word, isn't it?) about for all the years you've been reading this shit that I write and that is that we can not call ourselves a great country when the country has such a huge disparity between those that are obscenely rich and the rest of us. Where celebrities and pro athletes and rich people have access to healthcare while regular folks do not.

Let's not even get into the disabled issue.

Read this.

When all of this is over, I think I don't want to hear another word about a celebrity or a pro athlete or really anything related to vast sums of money or adulation of those who have vast sums of money.

Up
tick





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ward.











I did have a good morning teaching my dear students. One made a video for his final project related to the great Flannery O'Connor's short story "A Good Man is Hard to Find." I practically fell on the floor in a state of shock and awe when I watched it. Honestly. This 14-year old kid got that short story and created something original, weird and incredible. I wish I could share it with you and will let you know if he makes it public on Vimeo.

I also spoke with my therapist in a telephone session, and that helped me a lot. We compared notes on coping, talked at length about how we can do hard things, how helping others helps ourselves, how caregiving is a form of meditation and damn if I'm not grateful for the people out there working so hard to ease the suffering of others.

Thank you doctors and nurses and all those who help in the healthcare world.

Here's a poem by Lynn Unger:

PANDEMIC

What if you thought of it
as the Jews consider the Sabbath—
the most sacred of times?
Cease from travel.
Cease from buying and selling.
Give up, just for now,
on trying to make the world
different than it is.
Sing. Pray. Touch only those
to whom you commit your life.
Center down.

And when your body has become still,
reach out with your heart.
Know that we are connected
in ways that are terrifying and beautiful.
(You could hardly deny it now.)
Know that our lives
are in one another’s hands.
(Surely, that has come clear.)
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.

Promise this world your love—
for better or for worse,
in sickness and in health,
so long as we all shall live.

The World We Live In

The World I Live In

I have refused to live
locked in the orderly house of
      reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
       what's wrong with Maybe?


You wouldn't believe what once or
twice I have seen. I'll just
         tell you this:
only if there are angels in your head will you
         ever, possibly, see one.

Mary Oliver, from Devotions, The Selected Poems of Mary Oliver







What's happening here?

Sophie's getting a 48-hour in-home video EEG monitoring. We hope that the IVIG infusions she's been receiving monthly are working to resolve this hideous syndrome. Sophie is strong. I would say that I am, but sometimes I'm not. The tech who hooked Sophie up was the nicest guy. We listened to jazz and talked books. Saint Mirtha is here, making soup. The IVIG nurse was here this morning and had to stick Sophie four times because she's dehydrated. She ordered hydration and that was delivered. I am so grateful for Sophie's life and our strength. I'm grateful for health insurance that allows this in-home treatment. I'm grateful for those legislators that continue to fight the piece of shit that runs our country and threatens to take away life-saving provisions of the ACA that allow Sophie to get healthcare and us to avoid bankruptcy and feel some measure of relief. I know it's not perfect, but it's a grand step in the right direction. Those who think otherwise are welcome to live the life of a person with epilepsy and then the life of a caregiver. I'll train you in both with mastery (meaning you'll forget about supporting that piece of shit if you still do) estimated to take about one month. Guaranteed. If you're not willing, shut up and listen to us. We know how to fight and what to fight for because we have to, all the time.

#healthcareforall
#littlelobbyists
#epilepyawareness
#seizuressuck
#caregiverlife
#wholiveslikethis

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.

Dispatch from Los Angeles, via Holland and Italy*

dedicated to my comrades, particularly Sandra

When my friends and family check in with me of late, I reply with the above Bitmoji. Those of you who live on another, better planet, or who don't own a smart phone, or who disdain pictorial representations of oneself or, worse, words, who bemoan the dwindling use of language and/or have no idea what a Bitmoji is or even an app, should stop reading now. I wish I lived on another planet, wish I didn't own a smart phone, disdain pictorial representations of myself and, worse, of words, and I bemoan the dwindling use of language, but I do love the Bitmoji app and find endless delight finding exact representations of myself thinking certain thoughts, having certain emotions and otherwise living. 

It's going. My uncle is recovering very well here at the house, and Sophie is on her second day of her sixth month of intravenous immunoglobulin infusions. I have successfully navigated the World of Sub-Sub Acute Rehab by scheduling my uncle's health aide, bathing, OT and PT home health visits. The highlight of my week was when I paid $1.69 for his medication which filled my tiny little mother mind™with wonder, as you can imagine.

If you can't imagine, I wondered what our lives might have been like if Sophie's medications cost $1.69 over the years, as opposed to at least $70 after countless hours of wrangling and upwards of $500 when the wrangling doesn't work. All thinking by the tiny little mother mind™ is rhetorical, of course. Socialized medicine works effectively, I guess, for some of the country but could, apparently, be disastrous for the rest of us (I don't want no government coming between me and my doctor!), so we continue to grease the wheels of capitalism, the free market and Big Pharma in the labyrinthine corridors of the greatest country on earth's medical system, Brazil.

What else?

Speaking of capitalization, I've CAPITALIZED on the increased caregiver duties by increasing my meditation practice which means at this point that I've started meditating off and on all day long. Reader, I can already feel those neurons in my brain firing off peace as opposed to chaos.

The trick (for me) is to be truly mindful of even the shitty stuff, to acknowledge it in whatever way you need, to dwell on it, to muck around in it, to weep profusely over it, to wallow in it and to take your time doing it. It's only then that it rolls off your back, maybe even disappears. I say trick because, let's face it -- I generally feel completely unhinged and at the edge of consciousness, especially when I learn at 7:15 in the morning that Saint Mirtha will not be coming in, that I won't be able to attend my friend Tanya's screening, that the IVIG nurse is going to be early and -- well -- I won't bore you.

So, that's the dispatch from Los Angeles. The upcoming week includes continued caregiver duties on two fronts but also more teaching of English literature, a Clippers game with my love and, hopefully, a trip to Portland next weekend, planned for months.

* This title is a nod to those who were subjected in the early days of their child's disability or diagnosis to the treacly treatise by a certain writer who compared the journey of special needs parent-dom to landing in Holland instead of Italy. Don't ask.

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

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.