Taking Care

I'm lying on my bed, next to Carl, who is going through his gorgeous photos -- birds flying everywhere, diving into water with perfect droplets making ripples, a whale breached in a sea of blue and my mind is lazy drifting except for one tiny fight there off in a corner, the corner of care. Care. Taking care. Sophie is getting her infusions of immunoglobulin this morning, her last treatment of the year and I've forgotten to tell Mirtha that she doesn't need to come until later because Nurse Hyo is here but they're all here and so this fight this tiny little fight in my tiny little mother mind™ commences, even as I lie in languor on my bed or because I lie in languor on my bed with birds and whales and nodding flowers. Everyone is always living their best life, I've said bitterly a few times in the last few weeks. And this is mine. The fight is small but it is mighty in that corner of my mind. Letting others take care of Sophie without feeling guilty, perhaps envious, even, of their facility. I stood next to Nurse Hyo and held Sophie's arm down, so thin that it really takes only two of my own fingers to span it, the vein so tiny yet so resistant. Two sticks and the rising bile, I turn my head away and curse the nurse in my mind, curse all of them or Them, with emphasis. Is that the smallest needle? I manage to get out through my teeth, the words float there between us, a rhetorical question that I instantly regret. The nurse is unperturbed, her face placid,  or at least I imagine her to be. She is taking care. The needle slides pokes yet the vein slips, you can see it under the skin yet the blood flows and she's in (in the body! the body of my daughter!) and deftly tapes over it, connects the bag of antibodies to it, this entry into the body, through the skin and impossible vein, the fragile body of my daughter. It's a strange confluence of the barbaric and something nearly futuristic except that it's now. I'm only now imagining the nurse's own mind filled with something other  -- her own birds and whales, maybe, the lunch she'll have later, how these people are trials to get through. How I cannot get out from under the blanket of care of my nagging dislike of its constancy of how it looms, always. A tiny fight in the corner, over there, even as I kneel in gratitude over here at the care at the gifts this life has brought or that come with. 

On Being a Detective As an English and French Major

The whimsy of the picture belies the terror I feel at navigating the dark recesses of Sophie's brain. I am not a scientist.

Sophie's gotten four four-day treatments of IVIG, in September, October, November and December. She responded terribly in the weeks following her September and November treatments and very well after her October and now December treatments. The infusion is a blood product, and we work with a pharmacy that gets it from a pharmaceutical company. In early October, the pharmacy told us that the product they'd sent in September was "out of stock" and that they would be substituting an equivalent product. They assured me of the "equivalence." The same thing happened again in early November when the new product that we'd gotten in October was "out of stock," so we went back to the one we'd used in September.

Remember two things:

1. Sophie did not respond at all after her first infusions in September. In fact, she got worse over a few weeks. We attributed that to the viciousness of ESES and to the fact that having millions of antibodies infused into one's body was a significant thing, that her body would adjust, that it had worked before after a few times, that sometimes things get better after they get worse.
2. I am not a scientist or a doctor. I have a tiny little mother mind™ that sometimes doesn't kick in right away.

While in the hospital the other week, we learned that Sophie's ESES is still there, which wasn't surprising because -- well -- she was in the hospital and she had a terrible month. But while in the hospital, the pharmacy called me to set up the medicine to be delivered for the December infusion and told me, again, that the product we'd used in November was "in stock," but there was only a low supply of the stuff we'd used in October. While in the hospital, I wracked my tiny little mother mind™ over what the hell is going on with Sophie's brain, and it occurred to me that perhaps the product we used in October was the one that really helped Sophie so that we should try it again to see in our own little tiny little mother mind™ experiment whether it would help Sophie. I asked the pharmacist whether there was enough of that October product for Sophie, and she said there was more of the stuff that we'd used in September and November, but I insisted and she said okay. So that was that.

It's now a good week out from the December infusion with the same product as the October infusion, and do you know that Sophie seems to have turned another corner? I don't want to jinx it, but we have to make sure that we get that same product again. Here's my English and French Literature brain at work, because I'm not a scientist: Sophie's brain is exquisitely sensitive, and something about the particular combination of antibodies in the product she got in October and December relieved the ESES. Something about the particular combination of antibodies in the product she received in September and November worked negatively and plunged her into near-crisis. 

This is sort of a boring post, isn't it? I thought about providing a link to a news article I read recently regarding drug shortages and pharmaceutical companies, but I don't feel like looking for it right now. I'm living it -- what the article is about -- right now, along with living this other weird life of relentless vigilance. There's an article about that somewhere, too, and it's about some "groundbreaking" work or study on PTSD and parents of chronically ill children or those with complex medical needs. These articles make me sigh, at this point. I point out that there's no post in the trauma, that it's chronic traumatic stress disorder. It's why I walk around during some periods with a whimper in the back of my throat. I lighten the stress and dispel the whimper by conjuring my Italian grandmother who walked around the house in her latter days, dressed in black, with rosary beads, muttering pray that I die, pray that I die.

Anyway.

So, the terror that belies the whimsy is this: This is the way it is. The detective work. The constant vigilance. The inability to go with the flow. The grace of discovery, even when your brain is better suited to metaphysical poetry and words than the intricacies of the human brain and chemical compounds or blood. The fact that we are on our own is both intensely freeing and utterly terrifying.

48 Plus Hours In: Hospital Chronicles, Meta

There's something sort of meta about that photo, isn't there? What does meta mean, anyway? Among, with, after. Something like that, I think. Sophie's brainwaves, Sophie and then, beyond, Sophie. Her face fascinates me.

I'm not sure what those eyes are telling me, but the word implore comes to mind, and those eyes both sustain and torment me.

We're sprung from the hospital and home again. Sophie's ESES is still pretty bad, but she has no underlying infections or thyroid problem or lung issues and the results of the autoimmune panel are still pending. Teenage Neurologist asked whether we'd consider high dosage steroids (it's one of the standard treatments for ESES), and I said no not ready. The other two times Sophie had ESES, the IVIG worked, and we still have room for it to work. I'm also going to fiddle again with the CBD and the CBDA and we're going to get this thing beat.

If you have a thing for science and immunology, put your thinking cap on and tell me something I don't already know. Here are a few things to ponder:

1. Sophie began seizing within a couple of weeks of her initial infantile vaccinations, given to her to boost immunity and prevent disease.
2. When Sophie was given ACTH, a high dose steroid, she got worse, not better. But she also had TWO MORE VACCINATIONS during the steroid wean (we knew nothing about anything in 1995 so didn't blink when doctor ordered four and five month vaccines. The only one they held was the pertussis because back in those days it was the live cell pertussis or what we called the DTP.)
3. Whenever Sophie gets a high fever, she has NO SEIZURES. This is a phenomenon that has been noted in some studies and occurs in some people with autism as well. Fever is the body's protective immune response.
4. The only treatments that have ever helped Sophie for any period of time are intravenous immunoglobulin which basically floods the brain with bazillions of antibodies that dilute out the "bad" ones that have "leaked" through the blood-brain barrier and are attacking her brain (this one is hard to wrap your head around as it's sort of meta-seizure, but just go with the flow) and cannabis medicine (potent anti-inflammatory).

If Teenage Neurologist can be one, so can you. Remember what meta means: 

Among, with, after

24 Hours In: The Hospital Chronicles (warning: adult language is involved)

When I was sitting in the ER yesterday, listening to the groans and moans of the traumatized behind the vinyl curtains, I was busy writing a story in my tiny little mother mind™about Issac The Nurse who wore beat-up tennis shoes, a scruffy beard and a yarmulke. We were in the ER at one of Los Angeles' most prestigious hospitals in order to gain admittance to get an overnight EEG. At 11:15 in the morning, 24 hours ago as I type here, we were placed in an ER bay to wait for the bed in the hospital so that we could gain some knowledge about Sophie's ESES shenanigans. We had originally planned to get an ambulatory EEG, but I was concerned about all the co-morbidities of the ESES (the increased seizures, the choking and inability to walk, etc.) and had had enough of it so insisted to The Nice Neurologist, who agreed, that maybe we should just go in to hospital to figure stuff out (pleaser remember this phrase for later, Reader) and get some tests, etc. I don't want to bore you with the details, but suffice it to say that Sophie and I sat in the ER bay for the next ten hours. When we finally got a room, we were told that it was too late to hook up the EEG and that it would be done first thing in the morning. Here's how I reacted:

My friend Sandra actually sent me this picture on about hour seven or eight in the ER, and let me tell you, Reader, that's what got us through. Even now, as I post it, it makes me laugh out loud. The only reason we needed to hook Sophie up (that's neurological parlance for attaching electrodes to the scalp in order to read the brain's shenanigans) was to see the OVERNIGHT ACTIVITY. Again, I don't want to go into details, but at some point The Hospitalist (further evidence of the corporatization of healthcare in this g-d country) who was earnestly trying to get a neurologist or a fellow or a resident to get the EEG thing going, told me that it was like talking to a wall. I called on the great forces of my tiny little mother mind™and asked him to send The Wall my way, but IT NEVER HAPPENED! I apologize for the Trumpian punctuation (whom, I might add, gave me my second massive laugh of the day when I read this quote:

)


Sophie's father came to the hospital at hour eleven, and I went home to sleep. When I arrived back at the hospital this morning, Sophie was still not hooked up and eventually Damage Control, in the form of The Hospitalist and Patient Care arrived in the room to talk me down.

Remember this?

Shortly after Damage Control, a tween with a nose ring and scuffed-up Converse shoes arrived to hook up Sophie, followed by a teenager who called himself The Resident Neurologist and who neurexplained to me what seizures were and how certain drugs worked. He also asked me whether our neurologists had ever thought of surgery for Sophie or the VNS. My tiny little mother mind™ was blown.







Wasn't I telling you a story?

Issac means laughter, Issac The Nurse said when I told him that I liked his name. We then had what I would consider a Biblical conversation (I actually have read the Bible several times and studied it both in a faithful sort of way in the last century and also as a very beautiful text that I do not believe as the word of God in the literal sense) about Issac and his mother Sarah who was believed barren when God finally graced her with a child, the news making her and her husband Abraham laugh uproariously at the thought of it since Sarah and Abraham were nearly one hundred years old. People lived longer then, Issac the Nurse said as he busied himself with Sophie, and I replied, No! Didn't they have shorter lives? Most women were dead in childbirth. Issac the Nurse informed me that this wasn't the case, that Issac From The Bible lived the longest of the three in his family and died at 180 years. I said I thought those numbers were probably highly significant and symbolic, but Issac the Nurse insisted that no, it was true. 

Dandelion Wishes

So, yeah. Now we have not one but TWO misogynists sitting on the Supreme Court and ONE misogynistic sexual predator directing the whole shebang along with 51 sycophants in the Senate, minus one woman from Alaska.

How very charming for us, no?

I've got family members who support Trump and Kavanaugh. We can barely talk at all now, and I don't know what to do about this. I welcome all tips.

You should read this:

Somewhere on the wide spectrum between adolescent teasing and the smiling white men in the lynching photographs are the Trump supporters whose community is built by rejoicing in the anguish of those they see as unlike them, who have found in their shared cruelty an answer to the loneliness and atomization of modern life.

It's from this article, titled The Cruelty is the Point.

Still angry, moving on.

Sophie is currently getting her second round of IVIG infusions. She had two hellacious weeks after the first (probably unrelated) and has been perking up in the last week. I haven't given an update because I'm generally so stressed out about her and me and all the usual crap that I just don't want to exacerbate it by -- well -- sharing it. It's too much, Reader. Way, way too much.

I'm not going to be teaching the senior citizens any more because the company that hired me thought I'd be willing to drive all over southern California to do so. When I say drive all over, I mean ALL OVER. Like there might be mornings where I'd be driving three hours for a one hour class. On top of all of that is Sophie and her erratic schedule and life. Her care IS my job. Sigh. I will miss that crabby woman, though, and the soft-spoken woman who worked in the cotton fields of Texas. I need work. Freelance work. Suggestions welcome.

Saint Mirtha cut Sophie's hair really short, and she looks a bit like a dandelion. I close my eyes and make a wish and blow.

The Limitations of the Tiny Little Mother Mind™ and #SeezJahBoy

It's a big world.

That's what I tell myself when I read about or hear about things that are otherwise incomprehensible. It's a big world, I thought when I read about plushies in a Vanity Fair magazine in the last millennium. It's a big world, I thought when I actually ran into a plushy convention at a resort hotel in Orlando where I was attending a children's healthcare convention. It's a big world, I thought, when people started talking about reality shows and women being famous for being famous,  It's a big world, I thought when Arnold Schwarzenegger was governor of California, and it's a big world, I thought, when certain celebrities insured their famous asses, literally. It's a big world, I think, when people get all geared up for the season of bashing brains into dementia, otherwise known as football. It's a big world, I thought when people -- some of whom I actually know and love -- voted for and continued to support Donald Trump, even after he imitated and mocked a disabled man and bragged about his prowess grabbing women's pussies. That one was a stretch, to tell you the truth.

A lot of people are excited about last night's Miss America pageant -- how Miss Michigan, a blonde Barbie doll, made a comment about the bad water in her home state and appears "woke" in the newest sense of the word, and Miss New York, a black Barbie doll, won the prize. It's a big world, I'm thinking, wondering how in 2018 we still have beauty pageants (although I've read they're no longer "beauty" pageants, and there's no more bathing suit competition). What's that expression? Whatever floats your boat?

Anywho.*

My tiny little mother mind™ was seriously taxed today when I learned that Netflix released some movie called The After Party that's getting all the raves. Evidently, the main character has a seizure (after smoking marijuana) while rapping on stage, projectile vomits and falls to the ground writhing. The moment is captured on video, it goes viral, he's called "Seizure Boy," and soon everyone is doing the #SeezJahBoy dance.

This is comedy.

Sigh.

Where do we start? The young man who plays the character is an up and coming rapper and has a bazillion followers on Instagram. He sees himself, ironically, as a bullying advocate. People with epilepsy are commonly bullied. This is a fact. I know countless people whose children have been bullied, have been mocked and derided when they've had a seizure in school. The stigma of epilepsy is still so strong that adults with epilepsy often don't tell their employers that they have it. Teenagers with epilepsy are often at higher risk for anxiety and depression, and much of that can be attributed to our culture's ignorance of the disease.

So, yeah, back to #SeezJahBoy. Despite condemnation from different news sources and epilepsy and seizure awareness foundations, the hashtag is viral at this point. I have heard from good friends in the epilepsy community that when people go in to these conversations on Twitter and Facebook, in an attempt to counter the ignorance, they are being called trolls or "racists" (because the movie is predominantly by black people). How many people did this show have to go through to get put on the air? Are we overly sensitive as parents of children with epilepsy or individuals with epilepsy? Do I think the show should be pulled? To tell you the truth, this sort of thing so taxes my tiny little mother mind that I think nothing at all. I don't have the energy to think about some stupid movie that makes a mockery of people with epilepsy. I don't give a fuck about the writers, the editors, the sound people, the young actors and wannabes that made this movie. There is no big world that holds such shit. The big world shrinks in to a dot, and that dot is a portal to my house where my epileptic daughter sits in her wheelchair, the little vein in her forearm penetrated by a needle that brings an infusion of antibodies to her brain, so many antibodies that they literally flood her brain and dilute out the bad antibodies that have been wreaking havoc, causing her to seize, near constantly, in her sleep and subsequently destroying her ability to walk and eat and move in the world.

Dance on, #SeezJahBoy people.

The world is ugly,
And the people are sad.

Wallace Stevens, Gubbinal


















*New Readers should know that I hate this expression and only use it facetiously.

Infused with Gratitude and Antibodies

I am so grateful in this moment to hear the steady tick of the intravenous immunoglobulin being infused into Sophie's body. I'm grateful for the gentle ministrations of the home health nurse who has already spilled her life story to me -- a life story very different than mine but I'm open to -- well -- everything. She will be here every day for the next four days and then monthly for the next six months.

I am so grateful for all the support we've gotten in the emails, texts and comments here on the blog and on Facebook over the last couple of weeks in particular. I'm particularly grateful for Christy H, a friend here in Los Angeles whom I never see but who also has a child with special healthcare needs. I got a delivery on Friday from a courier service, opened the large box and found a beautiful note from her and her husband and a bottle of very fancy champagne and a bottle of beautiful rose. This just brought me to tears, to tell you the truth. Here it is next to the hard-won medication that is being infused into Sophie's veins with the hope and expectation that it will help her to recover from the terrible syndrome that has caused Sophie so much suffering. How many folks do you know who have such riches side-by-side in their fridges?

I hope your Sunday has been a good one. May the week ahead be filled with champagne and necessary blood products.

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.

Everything Connects Us to Everything Else

so said Leonardo da Vinci, and he wasn’t kidding.

The Neurologist called last night, after I’d posted (scroll down for yesterday’s post) and confirmed what I’d suspected, that Sophie is having another occurrence of ESES. My instincts were correct, I was right, Sophie’s “decline” is due to that and she will be treated with Intravenous Immunoglobulin — infusions — and hopefully it will be resolved. The Neurologist was sorry, and I am not angry with him at this point. Yes, he should have read the report two months ago, so Sophie could get treated. All of it, every single bit of it, is emblematic of — well —  everything in our world from diagnosis to medical education to our notions of what it means to be human to the commodification of healthcare to inequality to current politics to the differences in the notions of curing and healing to perspective and privilege and grief and grace. As for anger, I  have little space in my heart and brain for that today. Maybe later. Maybe in my next life when I come back as a stoned woman in an azure bikini and surf all day long and love the Bird Photographer and read poetry all night. So, maybe never. The Neurologist is incredibly supportive of our use of cannabis, and that is everything. I’m not in the mood to tell you about ESES today — if you’re interested, you can look it up on the internets. There’s very little known or understood about it, so you won’t be overwhelmed with information. You might wonder why cannabis doesn’t protect her from this bizarre epileptiform activity, and so do I. I do believe, with The Neurologist and Dr.Goldstein, that Sophie is having the least amount of actual clinical seizures in her life. During her last two bouts with ESES, she was having up to 7 giant tonic clonic seizures a day and hundreds of myoclonic ones.

I freaked out last night, had an hour or so of the past 24 years collected in my body brought to the surface, and it was Henry my son of twenty years who comforted me. Rather, we comforted one another. I’m so sorry, I told him. I’m so sorry for all of this. Henry, lying beside me, said, it’s okay, Mom! It’s made us who we are. Which is so good.

Fetal Position Requests

My favorite Bitmojii currently

Which do you want? Bad news or good news?

The bad news is that I'm not going to Italy on Saturday with my father and sisters and cousin.

The other bad news is that I'm going to take Sophie into the hospital now to see what the hey is going on with her. She's declined quite a bit, and we're going to do an overnight video EEG. I'm concerned she might have developed ESES (electrical status epilepticus in slow wave sleep) which she's had twice before. I only list this second because it helps to soften the blow. We do what we do to cope. That's how we do it.

The good news is that they have a bed at the hospital, the nurses so far have been really great (one acknowledged that since I've been doing this for two decades, I must be really on top of things), and I'm actually feeling relieved that decisions have been made and we're moving forward.

Do what you do as far as sending good vibes Sophie's way. The whole prayer thing eludes me, but I welcome them, along with light, love, strength, courage, peace and, of course, leftist politics.

Sophie's struggling, and she's still the light of my life.

All will be well
All will be well
All manner of things shall be well.

The Good Neurologist: A Story of Gratitude

Sophie understands it and thinks it sucks.

The Good Neurologist is happy to see Sophie bright and attentive and walking on her own into her office instead of slumped in her wheelchair. The Good Neurologist acknowledges how wonderful her patient looks.

The Good Neurologist apologizes for Sophie's traumatic EEG from a couple of months ago and realizes that it wasn't a great example of Sophie's improved clinical presentation. She is happy to report, though, that there is no ESES on the EEG. ESES is short for electrical status epilepticus in slow-wave sleep, and Sophie has had two bouts of it in her life, both devastating and too traumatic to recount here. The Good Neurologist is also understanding of the mother's aversion to learning what was on that EEG and decides that we don't need to do any more for a really long time.

The Good Neurologist takes notes while the mother talks, and she asks questions about how Sophie's CBD is dosed. She is appropriately excited by the mother's report of relative seizure freedom since going back on the original California Charlotte's Web.

The Good Neurologist is genuinely interested in hearing the mother discuss what types of cannabis Sophie has tried, how well they've worked or not. She takes notes.

The Good Neurologist listens avidly and carefully as the mother tells her about the disastrous epilepsy conference where the mother was insulted by The Good Neurologist's colleagues. She doesn't flinch when the mother names the offending parties and says, I was enraged by it for a while, but my overall feeling now is that I don't give a damn what the neurology world thinks.

The Good Neurologist is able to do a sort of mind meld with the mother so that the mother understands that The Good Neurologist is very excited about this new treatment for Sophie, even though The Good Neurologist is unable to jump up and down and scream into the hallways because some of her colleagues are assholes and might not approve.

The Good Neurologist has big brown eyes that widen when the mother reports how much of the hated benzodiazepine has been weaned from Sophie. She is very, very impressed. She acknowledges this achievement. She provides encouragement to keep going.

The Good Neurologist speaks to Sophie and is warm and engaging. The mother and Sophie leave the office of the Good Neurologist and drive through afternoon traffic without crying or seizing, respectively.

The End.