Wednesday, May 10, 2017

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.

21 comments:

  1. So glad you have a friend there with you and at least one supportive doc on the phone. Hoping you'll be home tomorrow.

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  2. Yes, get outta' there! Sending love. Xo N2

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  3. What hits me with this one is that you are surrounded by little minds, none of which are your own. Which I know is the basis of your trademarked moniker. Little and closed minds. It really is enough to make us all go crazy.

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  4. I've never met you but I love you. And Sophie. And you may have PTSD (who wouldn't?) but you are FAR from crazy. Also that room reminds me oddly of Miss Havisham's decaying mansion in Great Expectations. Something about the color scheme and the chandelier and the weird shadows it casts. I know you get weary. It's been such a long fight. But I look in your eyes and the eyes of your mermaid, your selkie, your strong and soulful Sophie, and I see STRENGTH. Keep writing the truth. We need to hear it.❤️

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  5. Having a chandelier in a hospital room is pretty weird.

    I'm glad Sophie doesn't have pneumonia and I'm sorry you two were once again subjected to shit in the medical system. I take pride in being a nurse and doing a good job and then there are people who don't do such a good job. One of our docs is a total asshole and there is nothing I can do about it.

    Sending hugs.

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  6. I read every word of your post. I wish the "swamp" dwellers and their leader had read every word of the AHCA--wait, make that the dwellers--before they passed it! I hope Sophie is home soon and surrounded by her colorful existence there. You, too!

    Best,
    Bonnie

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  7. Keep up the resistance, Elizabeth. This is just so awful. My heart bleeds for you and your country. And most of all for you and Sophie caught up in all this mess.

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  8. This post has brought me to a hopeless rage. Not just for you and Sophie but for all of the children and adults, too, whose lives could be so dramatically changed if the fucking stupid medical system would just stop with the bullshit and do what they're supposed to do which is to help people and...oh god.
    I'm so so sorry, so sorry, so sorry. We've all been driven insane because of everything going on. Still you persist and I swear to you, when it's all said and done, it is you and it is Sophie and it is Dr. Goldstein who are the heroes and that doesn't do you much good now, does it? The political is the personal and the personal is the political and all I can do is say, "I love you," which is true but doesn't help one bit.

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  9. Yes, PTSD is a real thing for some of us in "regular" lives; complex PTSD, I think, is what they call it when you're subjected to daily exposure to trauma and stress.

    You are beyond strong, Elizabeth, for yourself and Sophie. Thinking of you and your lovely daughter.

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  10. I do believe Sophie is sensitive to the atmosphere around us, and this pervasive toxicity emanating from 45 and his cohorts must be hard to bear. It's hard for all of us. I feel utterly jangled by it, all the time. I wish we could change the very air around your cherished girl. Around us all. (I am noticing in that second picture that Sophie and Henry have the same dramatically beautiful eyes.)

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  11. Chandelier = weird. But I DO love that picture of you swinging from it.

    It's infuriating to think doctors are unable to talk about an aspect of patient care because of some ridiculous, arbitrary ban. Clearly someone is in the pocket of the pharmaceutical industry. Not that that's news.

    I am so glad that Sophie appears not to have pneumonia. Whatever the problem is, I hope it rights itself soon. We really ARE all traumatized, I think, to different degrees and in different ways, by the state of the world.

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  12. Is it any wonder that Sophie would not also fall prey to the horrid stress we are all feeling? (Well perhaps not the "assholes"!) With as intimate a bond as you share I am sure she shares your worries. This all totally SUCKS. I am truly afraid for our country and all those who call it home (regardless of their friggin "legal" status!) My potty mouth is in rare form these days as I feel so impotent. We WILL rise above all of this and will guard our freedoms far more carefully and closely once we do.

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  13. I hope that she is better soon—now—and that you are no longer in the hospital. Sending as many healing wishes your way as possible.

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  14. OMG! Bwhahahhahahha! The chandelier picture is the best! Isn't the hospital a weird place? I remember when my daughter was spending more time in the hospital than out. You are separated from time and real life. You get so overtired that you start laughing at weird things. And you start swinging from chandeliers.
    I really hope Sophie can go home today. Or better , she and you are already home eating your own food and swinging from your own chandeliers.
    💕

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  15. Glad you'll be going home today.

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  16. IMHO that doctor is committing malpractice. Sophie has cannabis in her body. The docs should be working with what is in the body. Why ask for a drug list if they ignore what is in the body.

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  17. You've said before over the years that there seems to be a correlation between certain events - I think one was a severe storm - and Sophie's condition. This girl is so tuned in. I'm glad she's feeling better and thank God you had someone with you. The thought of you being alone is heartbreaking - the whole thing is heartbreaking.

    You are a little nuts, a whole lot strong (admitting weakness is very strong) and smart as a whip, all necessary for chandelier swinging. If we can "send" anything, I'm sending lots of Love to you and Sophie and yes, I'm still with you, no doubt about that.

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  18. Only YOU, Elizabeth, could tell this harrowing tale in such a hilarious way! You had me laughing between my gasps of horror. You have been to hell and back, whhheeeeee! I love the bit about your rep making its way up the elevator and into the plaid pocket of the doc. You're killin' me here.

    I'm beyond glad and grateful that Sophie is okay. I'll bet those hospital visits wear her out.

    Love to you both!

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  19. oh, and I'm not EVEN going to comment on the, um, lighting fixture.

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  20. Your wry Humor and writing style makes me laugh out loud while also being absolutely horrified and angry about what you and precious Sophie have to go through! I'm glad she stabilized... and the Chandie and which is Odder, well, I have no words because I was laughing too hard! When up under Stress when Advocating for my Loved Ones who cannot Advocate for themselves, I tend to notice the peculiar things around me too, I thought it was the ADHD, perhaps it's a Coping Mechanism, I'm just not Sure? Big Virtual Hugs... Dawn... The Bohemian

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  21. I am so glad the two of you are not there anymore, and I completely understand her side effect symptoms flaring as you wean the benzo. It is a real phenomenon, to be sure. I had a similar reaction to gluten when I went off of it - now if I get even the slightest amount, it is as though my body mounts this formidable defense because it finally learned that it is poison and there is no way it is letting any of it slip back through. Sophie's body knows.

    That chandelier is such an amazingly sad metaphor for health care. Let's spend lots of money up front to look like we are something we aren't - lipstick on a pig, as it were - instead of focusing on the substance and the real work of what we're supposed to be doing here. I have wild fantasies of you ripping it from the ceiling and placing it atop your head so that the doctor that ignored you and examined Sophie would have to pay attention to you. And you know how I feel about your neurologist. It sounds to me like Dr. Goldstein is the opposite of the chandelier and I am so pleased you have her in your corner.

    45 and his merry band of fuckers have stirred up a hornet's nest for all of us and I can only hope that when the dust settles, folks like you and Sophie will be standing, victorious, with chandeliers to throw on the bonfire.

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