Stockpiling Medications

Planet Romanesco

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

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

Reader, are you with me?

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

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

Bless all the people working in healthcare.

Our strength is in our compassion, not our fears.

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

She In There

This is what Sophie looks like when I take away even the tiniest bit of Onfi, the benzo that we've been trying to wean her from for four years. I'm still weaning the damn drug, a tiny, tiny bit at a time. I tinker each time, as well, with the various cannabis medicine products, and good things happen. Every day is different, though, and we continue to live this life as an experiment in progress.

Like my dear Dr. Jin said, so many years ago, She in there, she know.

I am sorry that I've left you readers high and dry, an occasional post once or twice a week. I haven't visited blogs or left comments, have been deleting newspapers and articles from my Inbox and have just generally avoided -- well -- everything. I've been down and blue and struggling a bit with I don't know what, but I feel it lifting a bit and hope that I will soon be back in writing daily order. I'm engaged in the world as I've always been, but man oh man every single day we wake up to that vile emperor with no clothes and his persistent presidency. It's a freak show and a clusterfuck, and like we say in the writing biz, you just can't make that shit up. I'm not underestimating its effect on my psyche -- nor should you if you're of the same persuasion. If it doesn't bother you or you're one of his supporters, well, I'd bless your heart if I felt any respect for you at all. May it all be over soon and not because some bomb is dropped on us for being such idiots. The thing is, though, that what's rent is rent, right? The veil has been pulled back. The core is rotten, isn't it? So much work to do and most of it is about coming to terms with our privilege and our whiteness.

I've been reading a lot lately -- have been able to dig in deep and get through to the end of novels and bask there glad and filled up. I recommend Lisa Halliday's Asymmetry, Jesmyn Ward's Sing, Unburied, Sing, Terese Mailhot's Heartberries: A Memoir, Claire Dederer's Love and Trouble and An American Marriage by Tayari Jones. I had ordered a book from the library that finally came in, so many months after the request that I forgot where I'd read about it, but I really liked it -- a novel called Elbowing the Seducer by T. Gertler.

Oh, and then there's Fire Sermon by Jaime Quattro. I'm obsessed with her and her writing, her brain and mine.

What else?

I've tried to wander into museums, too --saw a beautiful David Hockney show at LACMA over the weekend and an amazing exhibit that included a multi-media show by Kara Walker at the Hammer last week. I'm so grateful for the sustenance of art -- of words and painting wrought, especially, from great struggle and suffering. Our lives are enriched even as our own troubles recede and perspectives enlarge.

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.

Update from the Cloister

See enough and write it down

Joan Didion

Can I tell you who Sophie is and how I know? Can I tell you that she looks directly at me, her eyes dark pools her life behind them something vast even as it is cloistered? She loves the way trees blow in the wind the feel of beads slipping through her fingers like water and water, the ebb and flow of ocean tide. These days, even as she struggles to move, her left leg dragging, her eyes are as piercing as they've ever been. What is that?

Here's the plan: Wean the Onfi. She is over-medicated with it, the drug that I suspect is the culprit in her decline. Order The Ashton Manual (thank you Christy!) Play with the CBD oil and add in a bit of THC.  Be grateful for the grace of friends, for mindfulness meditation, for love and resilience and the strength of the heart. 

Onfi needs another name, a moniker of dread and dependency. I took away a small bit nearly two weeks ago, and this weekend was an extraordinary one. Sophie ate well, swallowed well, reached for her cup and drank well. She walked down the street with me and always her gaze -- her clear and resolute gaze. No seizures.

The Gig Economy

In Ring Three of The Greatest Show on Earth:

So, in keeping with the general zeitgeist, Sophie will be driving Uber from here on out. That's because she needs to start pulling her own weight and stop taking hand-outs. She's a drug addict as well and needs to take responsibility for her actions. As her parent and primary caregiver, I do, too.

We just received notice that our private insurance company, Blue Shield of California, is jacking up our plan 40%. According to my very experienced and reasonable broker, it's due, in large part, to the sabotaging of The Republican President (that's what I'm calling him now as he was voted in by those people and is tolerated by those people and is supported by those people) over the last nine months. Yes, it's a whole lot more complex than that, and premiums for private insurance policies continue to vex the greatest minds, but that's what They should be working on. But, hey, what do I know? I certainly don't want the gov'mint coming between me and my doctor.

I've come to the conclusion that Sophie is over-medicated, that her brain has been damaged by long-term usage of benzodiazepines and so we must continue to wean her from it.

In the meantime, I will be shelling out even more of a co-payment for the benzo due to new health insurance rules that only allow a 24 day supply instead of a 30 day supply (something about the liquid form and not being able to open a bottle or give part of a bottle) and so that means more money for the drugstore and the drug manufacturer and the insurance company, more money because the drug, ineffective in controlling seizures, is powerfully addictive and could literally kill Sophie if stopped. We are, basically, slaves to it and to the whole shebang, the Greatest Show on Earth.

Hence, the Uber gig. Who's driving with us? We're thinking we can fill it with clowns and drive it over a cliff.

Tiny Little Mother MInd™ Report, Part 486,783

A lot of you have been asking me about Sophie, how she is, what's going on and whether the cannabis medicine is still helping her. I'm sorry to be so circumspect -- sometimes I feel like an old peasant woman who might jinx things if I dare to utter anything positive. The thing is -- Sophie is doing really great as far as seizures are concerned. I seem to have found a sweet spot with CBD and Onfi, and she's going weeks without any discernible seizures. She's also eating and drinking and sleeping really well. Her mobility is still not as good, though, as it used to be, and it's becoming difficult to take her walking. She's stiff and contracted a lot of the time and resistant to movement. The New Neurologist is working with me to try to figure out what's going on. I asked The New Neurologist whether I should just be satisfied with The Way Things Are. I asked him whether this might be The New Normal. I don't know if it's the years of mindfulness meditation or just what my friend Jody called years ago, creative denial, but I'm pretty good at accepting things eventually, at least with my tiny little mother mind.™ I've figured out most days that the harder I resist whatever is in the present, the darker the day and the quicker the descent into what The Bird Photographer has quite aptly named the dark side. The New Neurologist said quite emphatically, "No. She's only 22, and I don't think we need to accept this incapacity." He's ordered some tests, I continue to give her CBD daily, and I've made the executive decision with my tiny little mother mind™ to do another tiny little wean of the Onfi. The New Neurologist doesn't mind the benzo, so I've decided that I'm on my own, and you know what? I have no more f**ks to give regarding that miserable drug. I'm not sure when, and I'm not jinxing anything at this point.

We shall see.

So that's where we are, and speaking of cannabis:

photographer: Carl Jackson

Do any of you want to know more about cannabis medicine? You've heard me talk about Dr. Bonni Goldstein, right? If you haven't ordered and read her book Cannabis Medicine Revealed,* you should do so now. Dr. Goldstein is a nationally renowned expert on cannabis medicine, and a group of my friends and acquaintances had the great good fortune a couple of weeks ago to attend a presentation that she gave at my house. Dr. Goldstein has a year-long waiting list for patients, but she was not at my house to give personal advice about cannabis. She doesn't sell any cannabis products nor distribute them, but she is a wealth of information and helps thousands of patients with various illnesses to find relief from their symptoms. She spoke of the history and politics of cannabis and answered questions about its efficacy in treating various diseases. Since most of you can't or couldn't come to my house and ask her questions, you can educate yourself and others. I think you'll find the book enormously accessible with well-researched information and compelling stories of some of her patients.

Here's the link to buy the book:

Cannabis Revealed: How the World's Most Misunderstood Plant is Treating Everything from Chronic Pain to Epilepsy

*Disclosure: I helped Dr. Goldstein with the book and am paid a small percentage of books sold.

Mechanism of Action Unknown

Me, sitting on a stack of novels (my expertise), reading the insert to Sophie's Onfi (neurology's expertise)

So, I spoke with Karen, The Dark Overlord yesterday on the telephone to finish clearing things up regarding my recent conversation with The Neurologist. If you remember my post from several days ago, I was consulting with The Neurologist from Sophie's hospital room and asked her whether she might put her head together with Dr. Bonni Goldstein's regarding Sophie's care. I had -- erroneously, I guess -- thought that a consult between two MDs with separate expertise (one with Onfi and the other with cannabis) would be of benefit for their patient, Sophie. The Neurologist told me that she had received direct orders from her boss not to discuss medical cannabis and that she would, therefore, not speak with Dr. Goldstein. She wrapped things up by advising me to stop weaning Sophie from Onfi.

Post Marketing Experience

Later that day, when I'd recovered from the shock, I called the hospital where The Neurologist works to clarify this policy. I might have gone on a little rant with the nurse, but I used no curse words and was, in fact, as exceedingly polite as I've been taught since girlhood.  The next day I received a call from Karen, the Dark Overlord who, I learned, was not The Boss, but rather an administrative RN. She has a sweet voice and was as accommodating, let's say, as an insurance company representative or a programmed robot. You know the type: We understand your frustration. We understand that you're upset. We are working under the highest of standards. Per medical cannabis, it goes like this: We need more studies. It's an alternative treatment. Anecdotal does not mean evidence. Best practices. 

Mechanism of Action

Yesterday's second conversation with Karen, the Dark Overlord, clarified that The Neurologist, basically, lied to me. There is no policy from a boss that says she can't discuss medical cannabis with Sophie's medical cannabis doctor. Apparently, she does not WANT to discuss medical cannabis with Sophie's medical cannabis doctor. I told Karen the Dark Overlord that I found this not just incredibly frustrating but astounding and unethical. Karen the Dark Overlord assured me that the department is nothing but ethical. I truly do wonder what's going on, because I find it hard to believe that this doctor, with whom I've shared my daughter for over four years, would lie to me. I like this doctor.

I told Karen, the Dark Overlord, that a person like me who has been dealing with intractable epilepsy for more than 22 years doesn't really, essentially, care what the neurology community thinks about medical cannabis at this point as far as what I'm going to do with my daughter, but that hope never dies and that I still have hope that there will be some curiosity on the part of Sophie's specific health practitioners to learn why this medicine has helped her more dramatically than anything else she's taken for those 22 years. I also told her that I imagined a scientist would demonstrate some curiosity, specifically, toward Sophie's case. I also told Karen the Dark Overlord that I do care about younger families, and that families with children who have intractable epilepsy who are new on the path of discovery that multiple drugs are not helping but actually harming their babies and children will still be trusting enough to consult their doctors about medical cannabis. I believe fervently because of all the work (paid and unpaid) I've done with national organizations to improve the quality of life and medical care for children who suffer from refractory epilepsy, that trust between doctors and patients is paramount and that communication must be transparent and ongoing. I told Karen the Dark Overlord that that trust will be broken, that people will actually lie or fail to disclose that they are going to use medical cannabis (even though it's legal so far) when they realize their doctor has no interest or is being coerced to lie or influenced by pharmaceutical companies to lie or is -- let's be blunt -- intellectually lazy. Between this incident and the recent one where an esteemed pediatric neurologist who is being paid by a large pharmaceutical company doing studies on cannabis also tells his colleagues that it would behoove them to report their patients using medical cannabis to Child Protective Services, my trust is broken. Already shaken, my trust is irrevocably broken.

Pediatric Use (Sophie put on benzo at five months)

I told Karen the Dark Overlord that there were plenty of studies confirming that medical cannabis is an effective treatment for intractable epilepsy and that it was being held to an unethical and unreasonable standard given the drugs that my child and hundreds of thousands of others have been subject to for decades. She told me that she worked with life and death situations in the intensive care unit and wasn't familiar with these issues. I told her that these were actually life and death issues. Evidently someone pushed her INCREDULOUS button because she had never heard that.

Here's a very recent study, titled Efficacy of Cannabidiol in Children with Intractable Epilepsy from the esteemed journal Neurology. There are, literally, thousands of studies about the effects of medical cannabis on epilepsy that go back at least thirty years. What is going on here is harm.

The neurology community is doing harm.

Dragon Prayer

I'm really slacking off here on the old a moon, worn as if it had been a shell.  I don't even know where to start. Do I even need to start or start back? Sophie turned 22 years old on the 8th, and there was a bit of celebrating,

but Sophie isn't doing so well.

I had a mini nervous breakdown this week, too, which involved some early morning throwing of the Virgin Mary Oracle and other desperate drama, and that was partly because the Republif*^ks are dismantling our healthcare and partly because I went into the wormhole of Trying to Figure Things Out and have decided that Sophie is suffering from benzodiazepine withdrawal syndrome.  Strangely -- or not --  figuring something out (meaning your intuition is confirmed/affirmed backed by research and science) means an incredible release from fear into calm. The two reasons for my mini nervous breakdown are intricately entwined and can be summed up in three words: Medical Industrial Complex. Normally, I'd explicate, but the rant would be epic and, to tell you the truth, I don't feel like wasting my anger on the screen, and I'm better now, calmer. I'm also too busy fighting with CVS drugstore and Anthem Blue Shield to switch the benzo from tablet to liquid so that I can begin the process of weaning again (I can take away tinier amounts if it's liquid). I think the struggle is similar to Ben Carson going from neurosurgery to housing and development, all while comparing slavery to immigration -- oh, Bless his Neurosurgeon heart. 

You're going to need a pre-auth because this is a narcotic, the earnest pharmacist told me for, perhaps, the five millionth time since Sophie has been on this drug for nine years (the drug should apparently not be taken for more than a few weeks but, hey, let's give it to babies with epilepsy!) I'm also administering a new protocol of THC to help mitigate the horrendous effects of the syndrome and gathering information from the wonderful Dr. Bonni and from my friends in the know because The People in Charge don't know jacksh*^t about marijuana. Speaking of those in the know, the Ass Hole Care Act (AHCA) as proposed by the Chief AH Eddie Munster will be devastating to those with disabilities in particular and not much better for everyone else. It'll be awesome for insurance companies, though, and medical device manufacturers and, I guess, for those yokels out there who think the government has been coming between them and their doctor with the Affordable Care Act (yokels, insurance companies call the shots, not the government but hey, big business, free markets, the glories of unfettered capitalism!)

Oops. I said I wasn't going to rant.

Maybe I should quote a little Jesus.

Blessed are the meek for they shall inherit the earth. (Matthew 5:5)

Then shall he answer them, saying, Verily I say unto you, Inasmuch as ye did it not to one of the least of these, ye did it not to me. (Matthew 25:45)


Bikkhu Boddhi says,  "if we are to close the gap between ideal and actuality—between the envisaged aim of striving and the lived experience of our everyday lives—it is necessary for us to pay greater heed to the task of repetition. "

I think of myself at present as a dragon coming out of a cave. There's vision and hope in the fire coming out of my mouth, and there's also my tail, its scales the glitter of the past, replicated over and over. The blast of fire. Drag. Swish.

WOKE AF and What the Neurologist Says

Today was our quarterly visit with The Neurologist.  This is generally something I prepare for by downing three Bloody Marys and a chaser of frozen vodka (see the other 4,321,896 posts I've written on the subject. They generally begin with a photo of the waiting room wall with the CONQUER and TRIUMPH sign over the list of wealthy donors), but I'm not going to complain today because -- you know -- I'm grateful.

We've got health insurance (for now) and The Neurologist is very helpful as far as getting those pesky pre-authorizations that Anthem demands every month for the drug that Sophie has been on for EIGHT YEARS. When the Fresh-faced Pharmacist of the Month rings me up at the CVS, he inevitably asks me do you realize how expensive this medication is? And I say I do but tell me again how much it costs. And the young man says, Today it's $435. And I say that should be covered by insurance. And he says, Well, it needs a pre-authorization. And I say, Again?We've been getting this medication for eight years! And he says, It's a controlled substance, ma'am. And I say, Yes, I know that but I'm trying to grift the system here and keep the drug wars going by having benzo parties with all my friends. And he says, May I see your ID? Reader, I'll leave it up to you to discern which of those were alternative facts and which were the real thing, but I have digressed from my point that The Neurologist always helps me with The System and for that I am exceedingly grateful.

I'm also not going to complain about today's visit with The Neurologist because Sophie has been seizure free for more than three weeks. Yes. We have found the sweet spot, I guess, at least for now. I figure I can cover any jinxes by readily acknowledging that we might have a downturn at any moment. Downturns and rebounds are equal opportunity dictators.

I posted this picture of Sophie on Facebook this afternoon, and my feed literally exploded. Everyone is, of course, thrilled that Sophie is doing so well and many asked why? Here's why, I think, at least for now: Sophie was overmedicated on Onfi (the benzo that needs the pre-authorization) and the CBD. We know that CBD can jack up levels of Onfi, so when Dr. Bonni (Sophie's cannabis doctor who recently published a great book all about cannabis medicine that you can order on Amazon) suggested we decrease either the Onfi or the CBD to see if she responded, I naturally chose to decrease the Onfi. Faithful readers might remember that we jacked up the Onfi back in the fall when we spent six hideous days in the hospital ripping off the Vimpat, and I guess after a month or so her levels of Onfi were enough to put her in what I thought was an overall DECLINE. I was scared, ya'll and also resigned to -- well -- you know.

To make a long story short, I took away some Onfi and do you know that Sophie perked up? She more than perked up, actually. She is WOKE. She is rowdy. She is ready to fight with the rest of us against those who would stand in our way (we're talking about you Drumpf, and you Sessions and you Price and you DeVos and all of you who condone and support them and their retro policies that will hurt her and tens of thousands like her). She is not having seizures. She takes Onfi twice a day, CBD twice a day and THC once a day.

I'm here to blow your mind

Speaking of being WOKE, what did The Neurologist say? She was thrilled that Sophie is doing well and took care of my pre-authorization needs, but she also had a few choice words to say about the current clusterf**k that is our country. She was walking out the door, scribbling on a pad, but she said, I will NOT be here if the ACA is repealed and we go back to the Dark Ages before it when I had patients begging me not to write diagnoses in their charts. I think she kept muttering that all the way down the hall before she disappeared around the corner.



WOKE AF
#resist

Super Human Resistance

The only person in these parts who is super human is Sophie. She's basically arisen from a fast-declining, near-comatose state that lasted for a good six weeks or so. I think that I, along with The Powers That Be In Neurologyland, had a hand in her demise when we raised her benzodiazepine Onfi by about four times. I think she was profoundly over-medicated. As I've mentioned before, CBD can raise the levels of Onfi, so once I'd decided that she was over-medicated (with the help of her father and Dr. Bonni Goldstein, cannabis doctor extraordinaire) and lowered said medication, she began to emerge. I also brought her back to Dr. Joy Jin (Chinese doctor extraordinaire) who is giving her Chinese herbs and The Osteopath who is treating her overall well-being with regular visits. A week or so ago I also had an amazing experience with Sophie in my home which so blew my mind that I am hard put to talk, much less write about it. It was a "sound bath," and I know by even typing that out, I am going to sound like a crazy lady from LaLa land. Trust me. I don't do drugs, but I imagine what we experienced was similar in intensity and beauty without the side effects.

So, yes, arisen. Sophie has arisen like some kind of secular Lazarus.

Yesterday, we went to the dentist, a trip that I loathe, probably, more than any other aspect of caregiving. Sophie actually stayed still with only minimal restraint, opened and closed her mouth on command with a bit of cueing, and the new dentist talked to her the entire time she worked. She works with adults with disabilities and has trained to do so at UCLA, is probably about fourteen years old but is an angel, a true angel. She even made a little tool out of six or seven tongue depressors wrapped in gauze that she used to prop Sophie's mouth open. The usual tool is this metal clamp thing that resembles some kind of nineteenth century gynecological device and is so uncomfortable that Sophie generally thrashes and screams when it's placed in her mouth. The tongue depressor contraption worked perfectly because Sophie likes to bite on things, and she could do so even as the dentist worked on cleaning her teeth.

Again, arisen. Sophie has arisen like some kind of secular Lazarus. With help.


She's AWAKE.


The other thing I wanted to say here is that I wake up every morning in a state of dread. I know ya'll do, too, and I know most of you want to not only resist the clusterfuck that is our current government but stay alive while doing so. This morning as I did my usual morning things, I thought about being in it for the long haul. I realized that I've been in it for the long haul as a caregiver. I've watched my child seize tens of thousands of times, an experience that some people have only once if at all. It never gets easier, but I'm still here. Sophie, despite having tens of thousands of seizures, is still here. I'm taking cues from Sophie. She's a resister. I can be a resister. You can be one, too.

In addition to caregiving and seizures, though, or despite it and them, is a life filled with family and friendships and reading literature and poetry. There's making love and writing and laughing and drinking and eating good food. There's going to the movies and bird-watching. There's taking care of my garden and beautiful house. There's meditating and thinking and allowing my rich imagination to flourish. In between having seizures and convalescing for Sophie there's music and walking outside, there's looking up at trees and out to the horizon at the edge of the ocean. There's eating and watching and drinking and swinging and taking baths. There's being held tight by brothers and a mother and a father. There are things to chew on and mermaids. There's a purple room.

What's my point? We can't keep up this resistance without help and without acknowledging the other parts of our lives. I read an article today that I thought I'd share here. It's called How To #StayOutraged Without Losing Your Mind by Mirah Curzer. Thank you, Mirah! One suggestion , among several, is that we pick one or two things to concentrate on. I'm picking healthcare and disability-related issues,particularly for the disadvantaged and minorities.

What are y'all going to do?






#RESIST

Spinning

At the osteopath's office

The biggest spider that I have perhaps ever seen spun an enormous web that spanned about a quarter of the width of my backyard, and every morning I stood on the stoop outside my bedroom and looked at it, glinting in the sun. She sat in the middle of the web, waiting, I guess, for any errant creature to be ensnared. When I walked up to her, she sat there still, still waiting, and when I lay my finger on one of the anchor threads, she skittered up the vast and intricate highway and onto a cable that stretches the length of the backyard. This morning I stood on the stoop to see her, but she was gone and the web only a tattered thing, threads hanging.




This morning I struggled with Sophie or, rather, struggled with my despair as Sophie struggled with her seizures. It's been twenty-one years since it all started and nearly three weeks since Sophie's last hospitalization, and while her seizures are fewer and consigned to the early hours of the morning from, let's say, 4:00 am until 7:00 am when they come, one after the other, in her sleep, her days are spent very drowsy -- let's say totally drugged -- and she's unable to go to school. She is weak. She is on one drug -- a pretty massive dose, compared to where she was -- and CBD. I don't have any answers to the questions, so stop asking why? what do you think? what do They say? I don't know. I think nothing. They have no fucking idea.

I'm a giant spider, sitting in the middle of an intricate web that I've built over two decades. I'm waiting for an answer.

Here's what They did:

Sophie isn't having a lot of seizures, except for those few in the early hours of the morning (that reduce me to a raving lunatic, especially when I find her soaked in her bed and must strip it and her, even as she seizes) because she is drugged with Onfi, a powerful and dreadful benzodiazepine. She was, basically, ripped off of Vimpat, an anticonvulsant that she'd been on for over eight years (a small amount in the end, but a small amount of an AED is still an amount that the brain is accustomed to accommodating), but only after being infused with a giant dose of Vimpat (despite my misgivings about it causing hives) that was followed by giant hives covering her entire torso. Later, in consultation with a dermatologist, the three neurologists attending decided that the Vimpat and the hives were coincidental but, curiously, on the discharge papers the drug was listed under ALLERGIES.  She was hooked up to an EEG for over six days, had copious blood work, lung x-rays and urinalysis, was declared normal on entry and three days after had a urinary tract infection that called for an antibiotic (the only time she has been on an antibiotic in the last fifteen years was last spring when she had her wisdom teeth out). One neurologist suggested the drug FYCOMPA as an option to replace the Vimpat, but I pointed out that it was known to cause homicidal ideation, and The Neurologist agreed that he'd seen pretty serious behavioral issues with it. I'm not going to make any jokes here, so just go back and read those italicized words, Reader, and come to your own conclusions. I'd love it, too, if you read this post from over a year ago.

Remember that I don't have any answers. I'm a spider who's been spinning a web for years and I'm now waiting. The other option via the Great Minds of Neurology was, of course, to ramp up the Onfi and work with CBD (remember that CBD and Onfi together show promise in seizure control), so just like some game contestant, I picked that door and took Sophie home, drugged out of her mind on a nasty benzo and an antibiotic. We had absolutely no resolution to the problems that brought us to the hospital in the first place, although I guess there's some comfort in knowing that Sophie is now officially off Vimpat. They (the Powers That Be/Neurologists) have no idea about the CBD and how and if it'll work. If you remember, THE PARTY LINE is not to pay any attention to CBD other than to give a few winks as a sign of tolerance, at least until the big pharmaceutical trials do their slow slog of research. This is because the federal government still has marijuana listed as a Schedule 1 substance, along with heroin and cocaine, and has determined that it has no medicinal value and therefore no public entity can study it. Sophie had nearly two and a half years with dramatic success on CBD, and at no time during that period did any neurologist express any interest -- real scientific interest -- in that success. So we're sent home, basically, on our own, to figure things out. 

Fortunately, I have Dr. Bonni Goldstein to help me figure things out. We're trying a new strain of CBD, along with THC, this week, and I'm hoping that I can reduce the Onfi at least enough that Sophie can live. Yes, I said live, because what she's doing now is not fully living. She is drugged. I took her to the osteopath this morning, and she lay on the table under Dr. Johnson's gentle hands and actually opened her eyes and smiled at the doctor. It was the first time she'd smiled in weeks, and I know she felt some kind of release. I was sitting on the edge of the table, my hand over her legs, and I couldn't stop crying, so Dr. Johnson stood up and brought me a tissue, told me that it was all right to cry. All will be well, she told Sophie, all will be well.







This is as long of a post as that spider and her web were big. I was going to spin into commentary on Drumpf and the article I read here about his nephew who had infantile spasms, the same diagnosis as Sophie's back on that dark day in June of 1995. I was going to rail about health insurance, how premiums are going up not entirely because of the Affordable Care Act (as the conservatives say) but because our for-profit health insurance industry is utterly dysfunctional. This is my web, my rant and yes, it all goes together. Watching Sophie seize, Drumpf's nephew's infantile spasms, the removal of his healthcare coverage, the expendability of the disabled in our culture, my own fatigue and burn-out despite a wealth of support, pharmaceuticals, party lines, obtuse neurologists stuck in boxes, friends and family who just don't get it, Sophie's seizures, and I'm skittering away, my web tattered.

Here's what we need:

1. The federal government needs to deschedule marijuana
2. Pump money into researching its use as medicine
3. Keep Big Pharma out of it by fostering equal partnerships between patients, farmers, interested parties and researchers
4. Expand the Affordable Care Act into universal health coverage
5. Vote for Hillary Clinton for President and hold her accountable
6. Kick Donald Trump and every single racist, misogynistic, homophobic, xenophobic person who votes for and supports him out of the country and into exile on Guantanamo or one of those for-profit prisons filled with generations of black men who were thrown into them for possession of marijuana during the fake Drug Wars.

You Cannot Fold a Flood

So, um, the hives came back.

My instincts are evidently still pretty sound. That big 'ole bolus of Vimpat was the wrong approach. The Sweet Doctor Whose Name Rhymes with Kevorkian confirmed them. He got on the phone with Doogie and our regular neuro and pulled the Vimpat. When I pulled back Sophie's hospital gown and saw the giant hives covering her, I felt terror (not at the hives but at the feeling they don't know what they're doing), a rush of anger (not at the doctors but at The SITUATION) and then just that same preternatural calm that I imagine has everything to do with Hospital Time and the weird stasis that comes along with sitting next to your child in a hospital bed for hours and hours. Then Sophie's father came in to spend the night with her and I drove the streets of the shitty back to my bed and fell into a deep sleep and dreams of boats and waves and whales. Honestly, I did.

So, what's the plan? The plan is to increase Onfi, the benzo, and work with the CBD. Someone asked me yesterday why I would continue to use the CBD when "it wasn't working." I'm not sure why Sophie fell out of the pretty decent seizure control she had for nearly three years. Maybe it was a virus, maybe it was the switch from brand to generic hormones, maybe it was a tilt in the earth's axis. As you can see (and what I've been writing and railing about for the past twenty years), the best doctors in the land don't know a lot either. Cannabis medicine is not a cure for seizures, but it's the only thing that has made a dramatic difference in her life. I really do think that we need to tinker with it and with the Onfi to get back to some kind of sanity. There are studies "out there" showing that the combination of Onfi and CBD helps to decrease seizures for some people. We're not fond of Onfi because it's basically a terrible drug that causes profound addiction and tolerance, but I think playing with it is in order.

I'll keep you posted. Thank you for buoying us the last few days. It means the world.







Here's a poem by the great Emily Dickinson that one of my friends sent me. Thank you, Anne.

You cannot put a Fire out—
A Thing that can ignite
Can go, itself, without a Fan—
Upon the slowest Night—

You cannot fold a Flood—
And put it in a Drawer—
Because the Winds would find it out—
And tell your Cedar Floor—

Emily Dickinson

Smells Like Bullshit, Episode 45,678,982

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





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













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

Anyhoo.


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

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

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

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

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

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

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


Guess what else is a potent anti-inflammatory?

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

Are you following me?

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

Us? THC, baby.







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

Berries in a Bowl and a Report From the Final IEP

I know I'm supposed to be grateful for drugs, but I'm not. Berries in a bowl are beautiful. When I open a new bottle of Onfi, the smell assails me. Milky. Sweet. Touch your finger to it and lick it. Acrid. Poison. When Sophie was a baby, I gave her the drugs and never felt grateful. I felt like I was giving her poison. I never could get out of my head giving drugs. Even today, when I pushed the syringe adaptor into the top of the new bottle, I wanted to gag at the smell. I didn't feel grateful.

Which has been said more?

1. Berries in a bowl are beautiful.

or

2. Drugs are poison.






Speaking of drugs, please visit and give some love to my article on Marijuana.com. I'm only going to be working there for another week or so (will explain when my contract is officially over) and would appreciate your enthusiastic response to it, if you're so inclined. It'd be like berries in my bowl.


Thank you to those asking how the Final IEP went. It went -- well -- finally. The "well" is an aside and not an adjective. An Assistive Technology person showed up for the first time ever and acted surprised that no one ever had before. When she said something about a box being checked off properly, I came down from the wire where I'd been doing my thing up in the air so high, ducked my head under the table and took a swig of my Bloody Mary. I leaped back up and did a little twirl. The OT said that Sophie didn't really need services but that she would continue to come in for a 30 minute consult once a month. I did a pirouette, a graceful dismount and took another swig of the Bloody Mary. I might have told her that The System had failed my daughter before jumping off the table into a handstand on the wire. The PT was a woman but spoke like a mansplainer. I learned about Sophie's need for weight-bearing and exercise. Despite a particularly excellent somersault off of the tightrope, I took two swigs of the Bloody Mary when she described a new bathroom contraption that she'd ordered only after I'd objected earlier in the year to the discovery that Sophie's aides were changing her diaper while Sophie stood up because there was no changing table in the bathroom. The P.E. teacher expressed satisfaction that The District had finally responded to her request to not give Sophie an F in P.E. because of scheduling difficulties. When I offered her a swig from the flask, she declined but said that when she's retired in two years, she'd meet me out for a drink. We all ate donuts, and when it was finished, I took a bow.

The Quarterly Tiny Little Mother Mind™ Report

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

Give me your arm, please! she said.

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

Apparently, I was invisible.

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

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

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

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

IN TA RESTING.

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

Anyhoo.

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

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

Smells Like Bullshit, Episode 33,456,897

We're laboring over here -- laboring to get Sophie off the drugs that she was put on over eight years ago, numbers 21 and 22. I'm not going to tell you about it -- I have about ten times that many posts on this blog that recount the trials and travails. I rolled my eyes today when I read an article about presidential aspirants' medical marijuana platforms. With the exception of one Republican (Rand Paul, who's one weird mother in all other respects and therefore not someone I would even remotely consider voting for) and nearly all Democrats (whose "scores" vary from Hillary's C to Bernie's A), the statements were identical in their ignorance. I'm not going to talk about that, either, because immediately after reading Chris Christie's platform, I downed all the bottles of Sophie's cannabis oil, shot myself up with a few syringes of rectal valium, popped a couple of Onfi and ran my fingers over the Vimpat dust in the pill cutter we're using to divide the thing so that we can wean her off of it. I rubbed that on my gums.

I'm feeling fine.

A friend of mine told me about a ProPublica site called Dollars for Docs. Have ya'll heard about this? Basically, the amount of money a doctor gets from a pharmaceutical or medical device company for peddling their wares is public information, so you can type in any doctor's name and see just what he's being paid to do, along with treating you or, in my case, your child. Sophie's doctor was paid a little over $300 in 2014 by a drug company, but the head of the UCLA Pediatric Neurology Department, a doctor who is quite cordial, whom I've interacted with for nearly twenty years and who is superficially supportive of cannabis oil for the treatment of epilepsy (and I say superficially because there are plenty of neurologists in his department who are openly resistant if not downright condescending about it which leads me to believe his leadership behind closed doors is -- well -- different) received $100, 771 in 182 payments from August of 2013 to December of 2014.

Guess what pharmaceutical company gave him the most money as "honoraria?" For "travel and lodging?" For "speaking" and "education?"

Lundbeck.

$38,781

Guess what drug Lundbeck makes?

Onfi.

Dr. Sankar also received handsome amounts for peddling the vagal nerve stimulator and several other drugs, including Vimpat.

You can't make this crap up.

I don't think I need to state that this has got to stop -- that pharmaceutical companies should not pay doctors ANYTHING to promote their drugs or devices. And if this is impossible, doctors should be required to wear uniforms plastered with all the pharmaceutical and medical device companies that sponsor them -- a sort of NASCAR-style lab coat and scrubs. That way, when we bring our babies to them, we can just scan their bodies and know with whom we're really dealing.

I'm not sure why we, as patients or caregivers, can possibly trust these doctors to act in our best interests or in our children's best interests when these physicians are being paid large sums of money to peddle and promote drugs, medical devices or surgery.

Is this out of line to post on my blog? Will I be lobotomized, perhaps, for expressing my disgust and frustration? That was, in fact, a neurological procedure performed as late as the mid-1950s on those deemed mentally ill and ironically was discontinued when pharmaceutical companies stepped in.

Pardon me while I peel my child off the floor where she's seizing as she withdraws from Onfi and Vimpat and then go work my ass off to obtain and then pay for the cannabis oil that has actually helped her, even as politicians make asinine comments about marijuana and physicians call for "more research" and Children's Services if we step out of line and start giving the oil ourselves.

This is not the time to tell me that some drugs are great. I know that. Nor is it the time to stand up for good doctors. I know they are out there. I also don't pretend to imagine that my rant will make one bit of difference (even as I type, I can hear the fascistic drone of Donald Trump's voice on the television in the living room, the king of capitalism himself -- taken seriously).

What I do know is that I will trust no one in the medical community to know and do what's best for me or my children if they're on the dole from pharmaceutical or medical device companies.

Now I'm going to lie down on the bed in a stupor and contemplate the universe.

Feeling Stretched and Mature (and a CBD Update)

La Jolla, CA 1996

The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.

from The Geography of Sorrow: Francis Weller on Navigating Our Losses.*

I finally picked up Sophie's emergency medication from the drugstore today, almost five days after I requested the prescription. I was going to complain to The Earnest Pharmacist about the colossal communication breakdown but decided that I didn't have the energy for it. I'm generally a dog with a bone in these matters, but I also pick my fights with exquisite precision. The drugstore is within walking distance, and the convenience of it weighs more than perpetuating the conflict. I noticed -- with rue -- that my co-pay was only $15 and wondered if I was getting the $.99 Store version. I recalled a time nearly a decade ago when I'd had to purchase it on a weekend, couldn't get insurance approval (back in the days when I stockpiled rectal valium for crazy parties I threw), and paid $1400 for two doses. Apparently, Diastat is a relative bargain these days, so any of you Rectal Valium Party Lovers should stock up. I'll put it on the top shelf of the medicine cabinet in the bathroom where it'll hopefully sit for a few years before expiring.

Sophie appears to have come out the other side of this drastic cut in Vimpat. She's been smiling again, her palms are dry (they get clammy and cold when she has multiple seizures) and aside from some weakness in her right leg (attributed to seizures as well and perhaps Todd's Paresis), we might take another bit away this weekend.

I can say today, though, that since beginning CBD in December of 2013, she has about 90% fewer tonic seizures, 100% fewer myoclonic clusters, takes 65% less Onfi (the benzo) and nearly 75% less Vimpat.

My grief is in the blurring of the boundary between past and present, as is my gratitude. I am stretched large.


*Thanks to my friend Kari for posting this quote on Facebook and inspiring me.