Announcement!

 

No, I'm not getting married or pregnant or publishing my book. I got nothing as far as life-shattering events to share with you. I AM permanently moving, though, and will no longer be posting on the Blogspot platform. This blog will always be here, and I'll be visiting to use my sidebar links to others' beloved blogs and to update my reading lists, but I'll be writing on my Substack and not posting teasers here. Please subscribe if you'd like to read my stuff/drivel/tiny little mother mind™-- it's free and, I think, easy enough. I bat around the idea of ramping up the writing and maybe even asking for paid subscriptions eventually, but for right now, I'm all into the non-transactional thing.

I am grateful for each and every one of you.

Here's the link.

Grifters

Making gazpacho on the verge

 A series of movie clips:

So, I can't go into it here, Reader, but I'm being grifted. It's outrageous and frustrating and hurtful emotionally and financially. There's nothing I can do about it, and while I wish I could tell you more, I don't want to enable The Grifter. I've gotten good legal advice about The Grifter and have accepted it. Accepted that I'm being grifted and can do nothing about it, that is.








My tiny little mother mind™ learned from a friend about a concept called status inconsistency which is fascinating, especially when I look on it as a kind of personality disorder. It would explain The Grifter, for sure.






In real life, I am thinking of that old Pedro Almodovar movie Women on the Verge of a Nervous Breakdown. Have you seen it?




In more cheerful news, both my dudes are home for a short time before leaving to go to their respective campuses where they will be studying virtually or doing some sort of hybrid thing during The Great Pandemic. They are really the greatest sons in the universe. And Sophie is doing pretty well. We had a scare with a person close to us who came down with The Covid and had to be hospitalized, but she is recovering, and we all tested negative (this time, for what it's worth). Sophie had an EEG the other day, and I had to badger The Nice Neurologist for the results, but I'm happy to report that it's the same old, messed-up EEG that it's always been with no ESES.

We have a lot to be thankful for, including the recent appointment to Vice Presidential-candidate, Kamala Harris. I think she's exciting, strong, interesting, brilliant and presidential. At this point, Terrible America could use even a kindergartner to replace the present POSPOTUS, so we're on the way out if not up with Harris.

What are ya'll doing?

Dispatch from the Left Coast

Do you know the art of erasure? I don't mean the art of disappearing or being invisible or making something or someone invisible, although that'd be awesome. I'm talking about taking a piece of writing -- a newspaper, the back of a cereal box, a page in a magazine, an advertisement -- and whiting out random words to create a poem. You should try it, especially if you're tired of or hate doing jigsaw puzzles. I hate doing jigsaw puzzles, and I'm busy enough teaching and taking care of my family, but I do love the art of erasure. Let's all do it and report back tomorrow with your creations.

I told Mary Moon that I feel anger and depression in equal measure but what rules me is dissociation and its close cousin, anesthetized cheerfulness, because what better coping mechanism do we have than the ability to let go and smile? I've perfected the art of dissociation after watching tens of thousands of grand mal seizures over the last quarter of a century. I'm not talking mindfulness here, although it has a place right alongside the dissociation. I believe both are distant cousins of the stick your fingers in your ears and hum method. Now that I'm thinking about it, though, I'm never cheerful. Optimistic, yes, but I can't stand cheerfulness. I really can't stand a Pollyanna. I prefer the darkly humorous and bitter people of the world who still manage to be incredibly kind. For instance, I'd rather be dying alongside someone who is sweet with a gallows sense of humor and dark view of mankind than someone who is sweet but claims to be a Pollyanna.

Who the hell is Pollyanna? I really, really, really can't stand the Pollyannas of the Pandemic. So much better to say, What the fuck? at the absurdity of waiting in line at the Costco for your giant jars of mayo than I actually LOVE the solitude and am enjoying making elaborate food for myself and then watching a corny chick flick! The queen of WTFs is my friend Sandra who has been posting her WTF lists on her Facebook page, recounting life in the Pandemic with a severely disabled kid. The thing is after the hilarity and dark humor of that, she tells us something for which she feels gratitude, and that gratitude is all the more beautiful for its WTF frame. She wrote come amazing commentary today about what it's like caring for a child with complex medical needs during the Pandemic. Turns out it's not that different than caring for him during typical times, something that we've been sort of Cassandraing about for decades. Read it here.


I don't know what I'm talking about anymore. I thought I might have caught the Covid on Sunday. I just felt OFF. Evidently, I don't have it, though, at least not yet, because I felt better on Monday and Tuesday after dosing myself up with elderberry syrup, Yin Chao and prayer. Just kidding on the prayer. I lay in bed for hours in the darkest hours before dawn making elaborate plans for when I got sick. I won't regale you with these as it'd be about as interesting as me recounting a dream. I did a lot of mindful panicking in my tiny little mother mind™ before I conceded to the powers of the earlier-mentioned dissociation and concluded the whole session with a dark nod toward imminent death and the cessation of present troubles. Last night I woke in the middle of the night with the most intense headache I think I've ever had. I stumbled to the bathroom and shook out two Advil (even though my mind balked because I've heard that Tylenol is better than Advil for the Covid) in the dark and then stumbled back to my bed where I lay for hours, wondering whether this was a precursor to Covid or a stroke, but I eventually fell asleep and woke embarrassed in the light at my earlier histrionics.

Reader, what's up with you? If you're wondering, that photo is Oliver multi-tasking. He went to CVS to get Sophie's medications while attending "class."

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 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

Tuesday Evening Tiny Little Mother Mind™ Peach Pie and Miscellany

In case you're wondering, Sophie continues to enjoy her new community-based adult day program. Today, she and a group of other clients went to the California Science Center. They rode the train downtown, and evidently Sophie loved the ocean room. Of course.

I took this picture this morning. I love Sophie's hands. They are so delicate and fine. I wish that she could use them more.

This sign made me smile and roll my eyes. It's hard to believe what's happened in the last five years in the cannabis medicine world. That being said, I heard about a neurological/pharmaceutical conference recently where the Powers That Be spent a good amount of time denigrating the CBD oils that we've been using for so long. The usual Two-Faced Neuro was there, sort of my nemesis if I really gave a shit anymore, which I don't. He was doing his thing, and this tiny little mother mind™ was doing hers.

Surprise, surprise. I hate to be cynical, but these guy and lady docs are about as cliche as the older man who has an affair with a younger woman.

Recently, a newspaper article touting the benefits of Epidiolex, the new CBD-only single-molecule pharmaceutical approved for Lennox-Gastaut and Dravet Syndrome, quoted a physician who said something to the effect of the "artisan oils" being used were "impossible to test." I don't mince words. What a load of crap. If crap could be, it'd also be transparent -- so clear that Big Pharma and the stooges in the medical world are busy, busy, busy undermining everything that's been done. Telling lies. Propaganda.

Don't get me started.

I made a peach pie today. It's one of the monthly offerings in my gig as baker for Everyone Needs Cake,™ in this case, pie. I took the skins of the peaches, Reader, and honestly? It was like slipping off a silk nightgown.

I tossed them in sugar and whiskey and let them sit for a bit.

I cooked the juices that collected after they sat for a while, added some cornstarch and cooked that up. Then I rolled out the pie dough that I'd made earlier and dumped the peaches in. I made a lattice with the other disc of pie dough and then I froze the whole thing for a couple of hours.

Here's the finished product -- perhaps a tad too brown in places, but my God! Those naked, cooked peaches sure smell good!

Doctor Visit, Year Twenty-three

Last Month

The new doc was a nice guy, even though he was about twelve years old. I appreciate that his practice, at a major medical center here in the City of Angels, has a significant number of young adults with developmental disabilities. I'm older than I look, he assured me at some point during the initial visit. I have three children. Generally, these visits consist of The Doctor asking me a whole lot of questions whose answers are duly noted in chicken scratch on the clipboard he or she sports. Nowadays, there's a keyboard and a computer screen that's always facing away from The Mother and The Patient. I'm not sure why this is so, but given the mundanity of the questions and the number of times in The History of Sophie, Inc. that I've answered them, I like to imagine that Sophie's file is flagged with some kind of red banner or star that stands for Noncompliant Mother. I like to imagine that it says somewhere in the reams of "information" it purports to have regarding my darling daughter that there's anecdotal evidence of seizure control success with cannabis medicine, but mother is a bit on the aggressive side so shouldn't be supported because it'll go to her tiny little mother mind™ and blow it up. I like to imagine a banner running across the screen that says, We have not helped this person in the 23 years that we've been treating her, but pretend like you know what you're doing.  Mother historically has been correct about her daughter and mainly appreciates kindness and honesty. To be fair, this was a Doctor and not a Neurologist, and like I said he was kind and direct and spoke to Sophie like she existed and I feel a bit of relief that we perhaps have finally found a physician that will coordinate her care, when it's needed. When it's needed is the operative phrase here, and it's been my experience that we're sort of held in thrall to the medical system, that we're a bit enslaved to its protocols and rules and regulations. But, I digress. The Doctor asked all the right questions for a bit and was respectful of my wish to not vaccinate Sophie. When he suggested that she should be tested for immunity to hepatitis, I reminded him that she would have no immunity, since she is no longer vaccinated, and then he suggested that she should be vaccinated with that and with the flu vaccine as well since the risk of complications and death from those diseases is so great, and I wanted to tell The Doctor that I feared Sophie's death every single goddamn day, and it wasn't from the flu or hepatitis, but that I'd also reached a sort of equanimity about it all, at least the death and absurdity part, but instead I demurred and gave a 16th century smile. When he asked whether Sophie was sexually active, I pulled the sword out of the scabbard at my waist and cleaved the keyboard in two, right between his legs, missing the member that had given him the three children, of course, because my aim is always true. Then I took a hold of Sophie's wheelchair and rolled out of the examining room.

Rhetorical Questions, Part 465,789 with Photos

1. Why is the process of finding, paying for and getting a wheelchair-accessible vehicle so labyrinthine?

or

        Why is the process for finding, paying for and getting a wheelchair so labyrinthine?

2. Why does the potential advent of Clobazam Oral Soluble Film not excite me?

or

     Why does the potential for an easier delivery of Onfi (that's clobazam) -- likened to a               dissolving postage-stamp sized film -- make me die a little inside.

Jimi Hendrix Acid Tabs
image found on the interwebs

(HINT: It's not because of Jimi Hendrix or LSD)


These are rhetorical questions.


3. Why are we able to launch a rocket into space with a luxury car inside of it?

or

       Why does this make me feel weary?

Elon Musk's recent venture

4. Why do we still have to pierce the skin with a primitive needle to get to a vein yet are able to inject a nuclear substance into that vein which will then carry it to the brain where it will light up metabolic pathways and provide information?

Vintage photo of brain imaging equipment

5.  Why did Sophie's most recent bout of seizures stop when I gave her a double dose of cannabis medicine, yet the Powers That Be maintain it has no medicinal benefit?


These are rhetorical questions.

Tiny little mother minds™ ask none but those.

The United States Medical System, Part Three in an Infinite Series told partially through photos

A friend of mine in the epilepsy community contacted me this morning from Canada. She had just learned that the drug Frisium (same drug as Onfi, a benzodiazepine that I've written about millions of times over the years as it's a hideous pharmaceutical with little efficacy for controlling seizures but is intensely difficult, if not impossible, to wean) is being discontinued. She wondered if the same stuff was going down here in the Disunited States.

Here's the announcement that the Epilepsy Toronto organization published:

Medication Alert: Discontinuation of Frisium Tablets in Canada

"Lundbeck has decided to discontinue the manufacturing of Frisium (clobazam) Tablets in Canada. They expect the current inventory to be depleted by the end of 2018.
This decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. The decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. Lundbeck is communicating this change well in advance in order to give healthcare professionals, patients and families as much advance notice as possible so that Frisium patients have ample time to successfully shift to an acceptable alternative."

My friend told me that she tried to get to the bottom of this issue by speaking with the company and then the pharmacist. Lundbeck told her that they "don't normally talk to the general public" and that she should speak to her pharmacist. The pharmacist knew nothing and said, "You should just call your doctor and they will prescribe something else." That evoked a little -- ok, a lot -- of sarcasm, because anyone who knows anything about Onfi/Frisium/clobazam knows that it's nearly impossible to wean it once you've been on it for more than a few weeks, AND there actually are no substitutes except for, maybe, Klonopin, which has its own set of horrors. I felt some small comfort in knowing that even in Canada, big pharmaceutical companies and pharmacies are as obtuse and insensitive as they are here. Canadians just don't have to pay for the bullshit, I guess.

See the ticket price of a 24-day supply of the drug Onfi that I picked up for Sophie just the other day. It's written very, very small up there in the right-hand corner. Sophie's been taking this drug in all of its iterations (Frisium, Onfi, tablet Onfi and liquid Onfi, non-FDA approved and FDA-approved) for nearly ten years. The cost for us has ranged from $550 a month to $70 a month over the course of years, and I've drug-muled it from Canada (you can find those posts if you go to the search bar and put in drug mule), gotten it from pharmacies in Germany and England, been reimbursed by non-profit foundations that are underwritten by Lundbeck (what a racket) and just plain coughed it up (the money, that is). Today, I can only get a 24-day supply because of the tight regulation of opiods and benzos, and since we use the liquid form (more expensive) and the pharmacy can't open a bottle to give a partial amount, we are stuck paying the co-pay every 24 days instead of once a month. Less drug, more money paid by us. Less drug given, more money made by insurance company, pharmacy and pharmaceutical company, I guess.

We have, above all, always been a slave to this drug and the cockamamie system because of its potency and powerful addictive characteristics. The drug has absolutely never really controlled Sophie's seizures. She was given her first benzodiazepine Nitrazepam at THREE MONTHS OF AGE on what was termed compassionate protocol because it was not FDA-approved. She was also given Ativan, Tranxene and Klonopin, none of which helped her and all of which were a bitch to withdraw. My tiny little mother mind™ wants to sit here and dwell on the fact that all of these drugs were and continue to be prescribed and given to little babies without any real knowledge of their long-term effects, but what's the sense of dwelling on The Great Unknown?

Exhibit A

It enrages me in the way that those of us who do this thing are enraged. We function quite well at a slow simmer.

Anywho.*

After my friend contacted me, I put on my Pharmaceutical Sleuthing Hat (see above).

I read about the Canadian shortage here. I called Lundbeck here in the Disunited States and spoke to a very chipper man who claimed to not know about the issues in Canada. He assured me that the drug Onfi had no manufacturing problems but that there was some rumbling about contracts with a certain distributor, Amerisource Bergen. There are, evidently, problems in the wholesale distribution area -- particularly with some pharmacies. Lundbeck is working on the problem but does not foresee any stoppage in manufacture of the drug. I wondered why the same drug, manufactured by the same company under two different names, was being discontinued in one country but not the other. The Chipper Pharmaceutical Dude had no answer for that. There was a point where he said that he'd speak with a supervisor about what was going on in Canada, and when I told him that I already had that information, he kept talking and talking over me, saying the same thing and for a split second that might have stretched on into eternity, I wondered if he was a real person or some kind of robot endowed with pharmaceutical intelligence. The chippery at that point gave me the creeps, so I refrained from asking him why my current supply costs $1584.65. I refrained from asking him what sort of collusion Lundbeck and CVS and Blue Shield have that they can't give me a third bottle to cover Sophie for more than 30 days so that I don't have to make a co-pay twice a month instead of once.

So it goes, as Vonnegut said so pithily.

I wonder what it would be like if Vonnegut were the Chipper Pharmaceutical Dude. My mind goes hither and thither, thither and hither. That would be Joyce.













* I use this word facetiously as I despise it. If you're a New Reader, know that. It belies the intensity of the situation described.

Tiny Little Mother MInd™ Report

Sophie walked down the street today -- nearly the whole block -- and back to our house, leaning only lightly on my arm. She hasn't walked that far in months, and I'm going to say that it's because she has been taking CBDA for over a month (since her last hospitalization), and I've reduced her Onfi again. She's now down about 50% from the amount she was taking last year at this time, and we're going to keep on going.

The backdrop to this is, of course, the recent roll-back of Obama-era marijuana rules, a "return to the rule of law" according to Attorney General of the Disunited States of America Jeff Sessions who is, in my tiny little mother mind,™ one of the biggest PsOS now running the country. He is correct that the federal rule of law maintains that marijuana is classified as a Schedule 1 substance and is of no medicinal benefit with that designation. Reader, I'm not going to write about this all over again. You can put medical marijuana or cannabis into the search engine over there on my righthand side-bar and pull up dozens of posts that I've written over the last five years or so.

What I am going to tell you about tonight is the SIT-U-AH-SI-ON we here in California face now that our state has passed a bill legalizing recreational marijuana.

Check this out:

Here's the thing. Sophie's medicine will be taxed at 34.5%. We will save 9.5% in taxes on her medicine if we make a trip to the Medical Marijuana Program in Baldwin Park, CA to get her a Medical Marijuana Identification Card (as opposed to just the regular doctor's recommendation), but we'll still be paying a 20% tax on her medicine each time we make a purchase. To put that into perspective, consider that the pharmaceuticals that have poisoned her for more than two decades are tax-free purchases. With legalization in California, cannabis is now subject to so many regulations involving licensing and shipping that we're sort of scrambling with shortages and access to products.

What does this mean? I imagine you're wondering, isn't making marijuana legal a good thing? Isn't that what we've been fighting for and working our asses off to get? Won't it be a wonderful thing to fill up the California coffers with cash?

Sigh.

Honestly, I don't think the California legislators or the general population that voted to make recreational marijuana legal give a flying foo-foo about cannabis as medicine. I imagine that most don't even believe the claims of medical cannabis patients or even experts. I had sort of a PTSD response to that tax chart the other day, when Dr. Bonni showed it to me. It reminded me of this drug Sophie was on back in the clueless days of the 20th century when I was desperate enough to try anything that The Neurologists suggested. The drug was called Topamax, approved for migraines in adult patients in late 1996,  but we gave it a whirl. Sophie quickly became, literally, anorexic as well as that neurologist-generated euphemism called irritable (meaning psychotic screaming all hours of the day). I'm only telling you this story because I can't tell you how many times I heard about people with migraines using it successfully and staying on it for extended periods of time because they loved the weight loss factor! Maybe only the seizure folks out there reading this will get what I'm saying, understand why I kind of broke out into a sweat when I looked at that tax chart. The tiny little mother mind™ is disturbed as well that after giving one mighty fine speech last night at an awards show, Oprah Winfrey is being extolled as a presidential contender.

Holy moley. This is where we are now?

Many do care, I guess, about cannabis medicine being affordable and accessible to everyone, but many don't. I imagine those legislators, with a few exceptions, just buckled to the Powers That Be, with dollar signs lighting their asses, and that's not a cynical thought. It's borne of experience. The whole shebang is a clusterfuck of gargantuan proportion.

Honestly, my tiny little mother mind™ is stumped.