Tuesday, January 5, 2016

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.™

59 comments:

  1. Reading this from the ER and laughing out loud but also sad and angry any of us have to go through this bullshit. Thank you for your words as always. :)

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    1. Oh, dear. I hope everything is all right? Please let me know!

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  2. I cursed, repeatedly this morning, getting Zoey and her wheelchair out of the car. I might have cried a bit as well. Love to you my friend.

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    1. Perhaps we were both cursing and crying simultaneously? How simpatico!

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  3. I adore that mind and your candid and true comments. I wish we could change things. I'm glad our neurologist talks about cannabis. I'm sad that nurse was such a dope. Are you sure she was a nurse? A real nurse. I'm a little sensitive πŸ’œ

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    1. Maybe she was a medical tech? She was young and certainly not as fine and seasoned as you, though!

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  4. God, I love this. Especially that final paragraph. I just started reading The Book of Calamities: Five Questions About Suffering and Its Meaning. I doubt I will learn any more wisdom from it than I just did from this blog post.

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    1. I love the idea of a Book of Calamities. The word "calamity" is one of my favorites.

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  5. You're a much kinder and more patient person than I am. I am shocked, disgusted and appalled that a doctor could not be bothered to find out more about the cannabis. What a narrow minded approach to patient care. Especially since it is obviously more effective than any of the other drugs Sophie has been on.

    And why is that drug so bloody expensive?



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    1. I think she's just rushed for time at best, and the party line is to wait for the "real" research. As for the drug expense -- well, that's just the usual clusterfuck

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  6. Love to you and Sophie. She is a mermaid. You are the ocean.

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    1. An ocean whose level is rising --- ha ha ha!

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  7. My God woman, how do you do it? Because you have to. Because you are a mother. And with loads of grace and irony, I suspect. Sometimes it looks like you and Sophie are the only ones paying attention to any of this and the sanest in the bunch. It's craziness.
    You amaze me with your resilience. I wish for things to be easier for you both this year, and I wish for you a doctor who cares about Sophie's positive response to the CBD, who pays attention.
    Hugs to you both.
    xo

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    1. Thank you dear Mel. It helps to have a sense of humor, of course.

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  8. Dear Elizabeth-I love you and this post. I could rant sometime about the labor and delivery floor at my local hospital but I think I'll hold my tongue for now.

    But honey, I feel you.

    XXX Beth

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  9. Why, why, why oh dear god, would these doctors rather cut into someone's body and/or brain than consider cannabis? Please don't even consider the VNS. Besides the lump in the chest which you have to consider with every transfer, the shock up the nerve through the neck will make her cough and choke while eating. Then it will break and will be forever embedded. Now I'm really looking forward to tomorrow... 😱

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    1. Oy. I send you oodles of fortitude!

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    2. Actually, it went very well. Took detailed notes of seizure reduction and where we got oil from (not sure if she wanted to make sure if it was reputable or if she was passing along the info to others...), and then stated, "Unfortunately I can't prescribe the cannabis for you yet." I was shocked. I'm always ready for a veiled threat. Asked if I was content with everything, did we need anything, etc., and that was that. She did NOT check his reflexes! ha

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    3. Sounds good. Thank you for reporting back!

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  10. "Her wheelchair dripped water. She's a mermaid." I loved this. Keep on, keepin' on. What you're doing is working.

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  11. Oh, Lord. It sounds like a dreadful experience but you sure write about it well!

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    1. It wasn't that bad, Steve. But thanks --

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  12. I thought of all the doctors out there blithely (and blindly) operating under their medical hierarchy when I listened to NPR yesterday. They had a piece about when/why hierarchical is more pervasive than egalitarian thinking.

    "We learn hierarchies and think about hierarchies for a long time before we really begin to develop egalitarian attitudes. So even though we might like egalitarianism more as we develop, we still have that initial preference for hierarchy."

    The last line of the interview just cracked me up:
    "the bottom line, David - if you want people to endorse hierarchical thinking, put them under time pressure or just get them drunk."

    http://www.npr.org/2016/01/05/461997711/hidden-factors-in-your-brain-help-to-shape-beliefs-on-income-inequality

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    1. I heard that piece, too. So interesting and certainly representative of my own experience and exchanges with The System.

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  13. "but The Neurologist didn't ask me a single question about the cannabis."

    While your daughter doesn't owe anyone by becoming a science experiment, you'd think the doctors would be beating down your door to find out why the cannabis is helping her.

    That doctor must see kids all day long that are suffering from seizures. Little babies probably. 22 drugs that didn't do squat and she's not asking about what is helping?

    I don't get it.

    Now I'm being shitty.

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    1. Our Neurologist only sees adults (Sophie is nearly 21!) but I know she has several patients using cannabis. She's actually quite supportive -- just not particularly curious.

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  14. Here's a subversive little thought, perhaps unworthy of your tiny little mother mind. Perhaps we could bypass the doctors entirely and show the insurance companies how much cheaper cannabis is. when they discover how much money they could save for themselves, they might use all their protocols and procedures to push the doctors into prescribing it.

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    1. Go for it. I certainly have no energy for interfacing with insurance companies!

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  15. I see that you with your Tiny Little Mother Mind took Hank's advice because this is right on and perfect and pure Elizabeth.
    I know you keep telling us but...how do you do it?

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    1. You know how -- partly because of y'all and the rest green tea and Jesus.

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  16. Keep reminding yourself of that quote. "All pioneers are considered to be afflicted with moonstruck madness." You are a pioneer here and one day these Very Intelligent doctors will just take for granted that Cannabis works. Many years ago it was considered bad to have a clean surgical unit. Now nobody would dare argue that. Because someone out there kept declaring it right while getting ignored over and over.
    It will happen for you. It will! (And I feel so silly this morning because of my own drugged brain. Hoping this makes sense.)

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    1. Thank you for reminding me of that again, Birdie! I had forgotten. It's so very true. I am definitely moonstruck and certainly mad. I am glad that you are drugged and hope that you're recovering nicely!

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  17. thank goodness you had a lovely respite in Yosemite. Now you're back in the bloody trenches. My go-to humor phrase when dealing with medical personnel: fook the fookin' fookers. Carry on, E.

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    1. I'll adopt that expression right now.

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  18. Glad the trip was so good, the pictures of your family are heartwarming. Glad it's safely back too - but back to this same shit? no, no gladness for that.

    Praying for the day that one of them really take a quite moment and listen to you and respond with interest, you know, that leaning forward - tell me more kind of thing. Holding on to faith and loving you for that, ever Elizabeth, "cope with this shit" attitude. I would have wanted to, not too loudly but enough to shake her up...scream at that nurse, but that's just me - you are a far better woman. Hope you have something nice planned so that this reentry isn't so hard.

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    1. All is well, Liv. Thank you, as always, for your kind thoughts and words. They sustain me!

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  19. My maybe generous guess is that she can't talk about it. Our whole team at Radys has been instructed to help w weans but no dosing! And that's what amazes me. That these brilliant people can't seem to think for themselves or challenge a system that prevents them from thinking. I mean COME ON. I dosed the CBD the same way I did the Keppra and Depakote. And the best part, it actually doesn't take a genius to heal epilepsy. It takes a plant and a mother.

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    1. If all the doctors that were "on the fence" or silently supportive would step forward and speak up, wouldn't that make a difference?

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  20. Replies
    1. Hmmm. Not sure what your comment means?

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  21. I have also had some infuriating encounters with doctors treating my daughter but yours is a strange one. There was no overt rudeness, belittlement, discouragement or crassness. But being ignored - as you were both by the nurse measuring blood pressure and by the doctor who wasn't the slightest bit interested in your cannabis and drug weaning results - is equally distressing. Here's a bundle of commiseration from across the miles.

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    1. Exactly. And yes. I'm pretty much resigned to it.

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  22. But can a bus is so int a resting

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  23. As always, I read your words and say "Amen, Sister!" I was just thinking today that in less than a year I will be able to say, with sorrow and pride, that I've been "rowing through the shitty" for a quarter of a century. Wow. So nice to feel like I'm not alone in my journey.

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    1. Thanks, Donna. Maybe I'll see you out there and we can paddle together.

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  24. Sorry that you and Sophie have to go through such unpleasant "drill" for no reason other than to have drug prescriptions and insurance forms filled! I do wonder how the neurologists assess their work and commitment to medicine after these kinds of visits.

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    1. I wonder about that, too. I imagine it's not what they'd imagined when they first had aspirations to be a doctor.

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  25. I am in awe of your ability to say your piece and then sit quietly while they ignore it. I can't imagine not stopping the neurologist and pointing out the absurd facts for her in plain terms, even though I am certain it would change nothing and only result in me being branded an obnoxious mother who is combative. And then I would implode. And then they would lead me away in handcuffs and start proceedings to make my child a ward of the state because I certainly was not fit to raise her. Fuck. Fuckity-fuck.

    I am SO happy that the cannabis is working, whether or not anyone in The Medical Establishment bothers to ask you about it. Love.

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    1. Yeah. I feel, at worst, a quiet despair. At best, I'm resigned. But it sure makes good fodder for writing. Apparently, I've hit a nerve here -- I'm sort of overwhelmed and gratified by the responses!

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    2. Ha! If I had a nickel for every time I consoled myself with the "good fodder for writing" notion... Sometimes, that is all the silver lining that is available in the moment.

      You have absolutely hit a nerve. I wonder how most physicians would feel if they realized that their inability to be curious about their patients' experiences and "anecdotal evidence" (God, how I hate that phrase and the way it is casually and disdainfully dismissed as if it were a steaming turd on the table) inhibited the doctor-patient relationship. Every time I take my girls to the doctor I have to weigh the consequences of being brutally honest about the research I've done and our experiences and the practicality of being noted in the chart as "combative" or "unwilling to consider treatment."

      On a positive note, I think you should know that I think your writing talent and unique perspective on the world means that everything is good fodder for writing. I am so pleased that I get to read your words on a regular basis.

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  26. A new reader. I will stick around to read more about Sophie!

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