Sprung

I wore my pot socks this morning and sprang Sophie from the facility. We're home now.

I also had an intense conversation this afternoon with an administrative RN from The Neurologist's hospital regarding The Neurologist's statement to me yesterday that she was "under direct orders from her boss not to discuss cannabis medicine." I was lying on my bed recovering from the last couple of days and looking at my feet while "discussing" the issue with the administrative RN whom I will call Karen.

I want to record all of this in real time because the emotion that propels me to write is as essential as giving "thought" to it over time. In doing so I am attempting to break the hegemony of not just the neurology/medical/industrial complex but also of the patriarchy that would stifle emotions or otherwise lessen their validity. This has nothing to do with gender. Part of our power is due to our hearts, our emotions, to what is at stake. Quality of Life. Life. Death. Intellect and reason is another part, but not primary and certainly not dominant.

Break is hyperbole, of course, because at best I will make not even a crack.

Have ya'll ever seen the movie Michael Clayton? If you haven't, you should. If you have, I'm sure you remember Tilda Swinton's character -- Karen -- and Swinton's incredible performance. The administrative assistant I spoke with today used all the hems and haws that we in the cannabis community have heard over the years, and she did it so easily that at one point, I lost my composure and said, Karen! Do you hear yourself? You sound like a robot! I wiggled my marijuana toes and Tilda Swinton's Karen flashed through my mind. I imagined GW Pharmaceuticals to be a sort of Dostoyevskian Grand Inquisitor programming Karen in real time.

Things did not end well. I loudly object to doctors not feeling free to discuss their patients' medicine regimens. I believe, from experience, that the relationship between doctor and patient is sacred and should be one of mutual trust, and that in this instance, in this real time when we are on the frontier of revolutionary treatment for refractory epilepsy, complete transparency is incredibly important. That trust is broken for me, but I'm old. I've been doing this for so long that, frankly, other than the incredible panic I feel every now and then that we are truly on our own, I don't give a flying foo what hegemonic Powers That Be think. If they can't have a simple discussion about my daughter's medical cannabis, or even show a modicum of interest in her welfare, I can't trust them. I worry about young families who need far more guidance than I, and it depresses me that all the work we've done to bridge this enormous communication gap between physicians and families is completely ineffectual.

I will be writing some formal letters to The Powers That Be. I am joining with a few other members of our community in a concerted effort to object to what we saw, as well, on that video the other day where an esteemed neurologist directly told his colleagues to report parents using cannabis medicine on children to Child Protective Services.

There's something going on.

Like Michael Clayton says to Karen, For such a smart person, you really are lost.

Ever Since 45 Came On The Scene, Sophie Has Been Terrible*

So, yesterday we had a little emergency, and Sophie and I were transported to a local hospital via ambulance. I feel strangely lethargic and unwilling to go into it, but Sophie was admitted under the suspicion of aspiration pneumonia. The hospital is a small one, around the corner and down the road from my house in the big shitty, and getting there was a story all unto itself, but, again, I don't feel like telling it. I will tell you that the whole time I was traveling in the ambulance and answering the questions of the paramedic, I was paralyzed with anxiety about the cost (even though we have private insurance and secondary MediCal) and that's because of the shit that's going on in our so-called "government" and the recent passing of what I call the Ass Hole Care Act (you're an asshole if you concocted it, you're an asshole if you voted for the people who concocted it and you're an asshole if you go along with it and we're all assholes for living in a country and accepting the whole cockamamie shebang that is considered "healthcare" in this wealthy nation). I feel positively unhinged of late, as I know many of you do, so riding in an ambulance seemed par for the course for the times and all that jazz. Cliche.

Anywho.

There's Sophie looking straight at you. She is actually stable now and does NOT have aspiration pneumonia as far as we know. Her x-rays are clear, and blood work is normal. We still have to wait on the blood culture to come back, but I am not convinced that she is sick and have therefore declined antibiotics other than the couple of doses she got intravenously when we first suspected the aspiration pneumonia. Lots of readers here have medical backgrounds, and frankly, so do I.

I suspect that the problem is neurological and related to the benzo Onfi that I've been weaning very, very slowly. The problem is that Onfi causes "increased secretions" as a common side effect, and despite Sophie being on it for nine years (yes, nine years), when we wean a bit from her body, it's as if the side effects increase as we lower the level. Does that make sense? Also, there's this metabolism thing that's going on with Onfi and CBD that I'll go into in a tiny little mother mind™ way later.

Are you still with me?

We had to go to this small hospital in my neighborhood, as I said, because of a fire department/too crowded "good" hospital/Los Angeles traffic reason, and despite the lovely nursing there, the doctoring was -- well -- abysmal, and I just don't feel like complaining anymore. I'm done. I know that I have symptoms of PTSD, and that while this isn't my "fault" so much, it's inevitable that the course my brain takes when I get near hospital settings and, particularly, hospital doctors, is fight and flight. It takes all of my formidable strength to stay calm, to acknowledge the bonfires spreading in my tiny little mother mind™ and then think of ways to calm them in a kind of reverse kindling way. The thought crosses through that I am just plain crazy and that every one knows it, that somehow my reputation as a crazy, non-compliant mother who has no trust in The Powers That Be has made its way from the dark days of the last century at New York Hospital to Columbia Presbyterian to UCLA in the new millennium to Glendale Memorial to that doctor's private practice, to USC Keck and now to Olympic (or is it Olympia?) Medical Center and up the little elevator and into the plaid pocket of the Doctor Without a Lab Coat Who Entered The Room of My Daughter, Didn't Introduce Himself and Proceeded to Examine Her Superficially and Speak Pompously About a Subject That He Has No Idea About, And That Is My Daughter.

Here I am, swinging from the odd little chandelier that hung from the ceiling in our hospital room. My friend Kari can attest to the truth of the above doctor, as she was in the room with me. She also took the picture.

Which do you think is odder? Me or the placement of the chandelier or -- hell -- the chandelier itself in a hospital room?

Please discuss chandeliers and hospital decor, particularly COLORS.

So, Sophie is stable. I'm going to ask to be discharged tomorrow. I had a conversation on the telephone with The Neurologist (who's from a different hospital that doesn't have chandeliers in the room) that was shocking and disappointing. I was hoping that she would have a conversation with Dr. Goldstein, the doctor who helps me with all things CBD-related. She had some interesting words about metabolism and the interaction of Onfi and CBD. Dr. Goldstein spoke to me via phone last night at 11:00 because she is a doctor with extraordinary devotion to her patients. She is, quite literally, the only doctor who helps me in any way beyond throwing drugs at my daughter and flippant remarks to the atmosphere that surrounds me. I said to The Neurologist, I'd really love for you and Dr. Goldstein to talk about this CBD/Onfi stuff because I trust you both and think we can help Sophie if we're on the same page. Would that be okay?

Do you know what The Neurologist said?

This is what she said, No, I can't talk to her. I'm sorry, but I have strict orders from MY BOSS not to discuss anything about cannabis with my patients.

I'm going to let you stew over that remark for a bit.

Remember that The Neurologist is an excellent one that has treated Sophie for over four years. Remember that she works for a very, very good neurology department at one of the best hospitals in California, if not the country. Remember that she is perfectly aware of Sophie's CBD regimen and has duly taken notes when I've paid my quarterly visits to her. Remember that we have no other options for Sophie for seizure control other than the lame medical device called a Vagal Nerve Stimulator, that I will absolutely not try. Remember that she generally asks no questions about the cannabis other than to note the dosage or any changes that we make. Remember that she told me several years ago that "the party line is we need more research." Remember that GW Pharmaceuticals is working mighty hard to get a cannabis product called Epidiolex through the FDA. Remember that the neurology community is strangely taciturn, if not downright obstructionist and two-faced with their patients using cannabis. Remember that the Attorney General of the Disunited States of Amerikkka is adamantly opposed to even medical marijuana and has said that good people don't use it. Remember that Dr. Price, the Health and Human Services Secretary is adamantly against medical marijuana and as effusively positive about the Ass Hole Care Act. He even lied about the Medicaid block grant stuff. Remember my harrowing trip in the ambulance with my PTSD. Remember these things as you muse on a physician telling one of her patients' mother that she has been ordered by her boss not to talk about cannabis.

These people do not give a flying foo foo about us.



















I think you need another picture.

I'm asking for discharge tomorrow, and we're getting the hell out of Dodge.












*My friend Cara noticed that Sophie did great for the last four years of Obama's second term and that these troubles began exactly when 45 became the nominee. In fact, Sophie was in the hospital for the first time in years during one of those dreadful debates -- I think the one where he lurked behind Clinton like a predatory rapist. Remember? Between the Ass Hole Care Act shenanigans and now this bizarro development with the FBI director getting fired and everything that's flying around about constitutional crises and coups and still people defending the Asshole in Chief -- well -- I'm adding Sophie's troubles to the list. It's what 45 has wrought. If I can be so bold as to draw a parallel, to make the personal political, I think we have to be strong. Sophie is strong. I am strong. We are all strong people. We have to 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.

Hospital Thoughts, Day Four

Aside from the putty and dirty lavender-colored walls in the hospital, I'm intrigued by the hospital gown print. Sophie almost looks like a Modigliani with her narrow face made even sharper by the tightly-wrapped turban. My mind wanders here and there during the interminable hours spent in the hospital. The hours are actually not interminable, though, as much as -- well -- hours. They literally while away. Hospital Time is something that I have struggled to articulate for as long as I've spent time in hospitals, and I want to do some justice to what, exactly, it means. The big round clock with the black numbers, hangs on the wall about four feet from the big black television and about six inches above the dry erase board that Robert the Nurse Assistant (when he introduced himself the first day, I thought he said I'm Robert the Narcissist, so I laughed and asked is it all about you? and he laughed and said that too) scribbles the names of who's attending us. The big black clock shows me every time I look up and glance at it (why? why do I glance at it? what does it matter?) what time it is, and I'm startled each time by how much time has gone by. I don't know how to explain this, really, and you probably won't understand unless you've spent some time in a hospital room. The time doesn't go slowly, really. It's not even boring. It's like being in a hospital makes a mockery of time. I've been here five hours! I'll think when I glance up at the clock, and in what seems like six minutes later, I've been here eight hours! It's really kind of astonishing. I feel the opposite of wired which would ordinarily be calm but it's not that either. Maybe it's a third state of being, a dimension all its own. I'm not complaining, just musing. During these hours not much goes on, which I imagine is something I should be thankful for as any number of things could be absolutely horrific in a hospital. The nurses pop in and out and the nurse's assistant, the one who takes vitals (weird expression, right?) tells me about her doll collection and then shows me a picture of the silicone toddlers that she dresses up and puts in a stroller and takes for a walk. I look up at the clock and notice that six hours have gone by as I spoon a pale macaroni and cheese into Sophie's mouth. I hear through the wall a man's voice saying Bend your knees, that's right, that's good. When I gaze out the large window facing east, I see some snow-capped mountains which I guess is nice, but really it seems like a mirage. The mirage would include the rest of you out there, living your lives, rain and sunshine, snow-capped, hours ticking and most probably defined where ours are blurry, cloud-covered.

When I think of the time, I think of bottle and a tiny ship suspended on a wave that does not move.

This morning while driving to the hospital I thought about meditation and how I am making a sort of meditation from this life. I was telling a friend that I'm not a chanter, but if I could make everything I do a kind of chant it was all I could do. Sort of an undoing. One of the nurses yesterday claimed that there's a meaning for everything, but you know what? I disagree. I don't think meaning is inherent in anything, really, nor is the absence of it. It's funny how we look for meaning and then find it. I think I'm making meaning which doesn't mean I'm in control but rather exercising some kind of sublime creative agency, and Sophie's situation helps to give me license to do so. Does that make sense? Of course I feel despair and depression, too, and that's okay. See how I'm whiling away the hours?





Bless your hearts for reading. Sophie is okay. She'll hopefully go home tomorrow, although we're not quite certain. The two doctors who've been treating her are pretty awesome in that they really include us as partners. Maybe not equal partners since I'm basically calling the shots, but they're smart and humble and one even told me that I was the bravest mother he'd met. I told him that because he's not a pediatric neuro, he probably hasn't met many mothers because the ones I know are so kick-ass brave, it'd take your breath away. They wish they could help us more, and so do I, but I'm struck by what seems to be a real shift in the neurologist/patient relationship. Since I haven't been in the hospital with Sophie for so many years, it's marked, and that's a good thing. I like to think that the work I and many of my peers have done for decades is finally making a difference, that medical students are being educated in empathy and humility. That or they're taking electives in theater and performance.

Doogie Howser, Sophie and The Tiny Little Mother Mind

One very fucked up EEG

Doogie Howser and I had a good pow-wow over Sophie. The plan is to hopefully get her back to baseline (which is never normal, so don't be overly alarmed by that EEG) with a giant dose of Vimpat. You might recall that we reduced Vimpat because we thought the giant hives were a toxic reaction. Maybe not, though. We also discussed the possibility that when The Evil Insurance Company switched Sophie's hormone med to a generic version six weeks ago, it might have thrown her off and exacerbated the situation. Anything is possible, apparently. We're in a very sophisticated medical building with all the fanciest equipment and greatest minds, including this tiny little mother mind, yet no one really knows what's going on. I am of course struck by how much has changed in that the video monitoring equipment is wildly informative, and I can take a picture of it with my tiny phone, yet little is changed from twenty years ago as far as treatments (the drugs! the drugs!) for Sophie. Last night, in conversation with the doc whose name rhymes with Kevorkian (how perfect, I thought, and unfortunate), I casually suggested in my dark way that instead of asking me what I wanted to do, we should just put a dart board up on the wall with our options and throw darts at it. The Doctor Whose Name Rhymes With Kevorkian looked at me like I was insane but tittered. The nurse, of course, burst out laughing. Later, he brought in a whole stack of consent forms for me to sign, and when I asked him what I was signing, he said it was for the video telemetry, and I said that I wanted to be sure that it wasn't for a hemispherectomy, and he looked startled and I said, I don't really trust you neurologists, you know, and we all had a raucous laugh. This morning, Doogie Howser claimed to be a "believer" in CBD. I told him it wasn't a religion, but I got the distinct sense that he was cool with it. Y'all know the party line. I think The Party really wants to get Sophie back to the control she had on Onfi, Vimpat and CBD but The Line is to "ignore" the CBD. The tiny little mother mind is on it, not walking The Line, as usual. I'll keep you posted.

Sophie is sleeping right now.  As you can tell, I'm ok. Strangely calm which might perhaps be dissociative but could also just be -- well -- calm. 

Fetal Position Requests

My favorite Bitmojii currently

Which do you want? Bad news or good news?

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

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

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

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

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

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