Saturday, October 8, 2016

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

29 comments:

  1. I'm hoping that a perfect combination of medication and the CBD will be found soon. In the meantime, I wish for you more sleep and sweet dreams.

    Best,
    Bonnie

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  2. Love you and thinking of you. Stay strong XO

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  3. Oh hon, I wish I had words that would help. I don't. But I have love and I am holding you and Sophie in its beam.

    Also, I trust your "tiny mother mind." It is powerful and true.

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  4. Love to you, and to your brave, bright, beautiful girl. Prayers for all. Thank you for sharing the poem, too. I've not read that one before.

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  5. It is scary--because we've been so indoctrinated to believe that doctors know everything about everything. I've been thinking about you all and wishing for peaceful calm happy seizure-free days.

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  6. I really hope you will find a new equilibrium soon. And peace and restfull sleep.

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  7. You will find the right combination. Your wisdom, knowledge, commitment, intuition...ooh, I could go on and on. You'll find it. Meanwhile, boats and waves and whales to carry you away for a spell sound like exactly what the cosmic doctors - who DO know what to do - ordered. Much love to you, dear Elizabeth.

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  8. Perfect poem.

    May you have doctors who admit when they don't know, and continue to work with you.

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  9. In my experience, mothers, especially those whose children have chronic health issues, ALWAYS know more than doctors. Stand strong and trust your instinct and judgement.

    Sending out my most fervent best wishes/prayers/mama+yogini+healthcare provider bhakti

    xoxoxo

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  10. That darling girl, those beautiful eyelashes.
    Your best instinct is the best medicine, E.
    You know I love you and your boys and your sweet daughter and am thinking of you all with a full heart. xoxo

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  11. I'm glad you got some sleep. Good self care, darling E.!

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  12. One of your words, abide. We do, with you. All this power should be able to overcome some part of such wrongness. Love to you all. xo

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  13. You watch over her, we watch over you. And I do add in my own sorts of prayers.

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  14. if only there were words to comfort and change the situation...

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  15. I am not a words person and as usual I have none. But I am a heart person and I am thinking about your wee mermaid, Sophie, her dad and you. Holding space for all three of you up here in Canada. xo

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  16. I think you have PTSD when it comes to doctors and hospitals, with good reason I'm thinking. All the memories come flooding back. Our bodies remember.

    I'm hoping the new/old combo works for her. Sending hugs woman. I wish I could hug you in person, perhaps one day.

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  17. Thinking of you and your lovely Sophie. I hope that you can get back to the right mix of drugs to get her back to the good place she was in.

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  18. Holding you all in my thoughts
    Xoxo
    Barbara

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  19. Yes, you are loved. You have amazing strength. Keep listening to that tiny mother mind in your gut. Take a long, hard look at the hormone switch. Can you switch back? x's and 0's N2

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  20. It is past 1:00 here and I was just laying in bed thinking of you. Hoping you are sleeping well and wake up rested.

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  21. That IS a perfect poem. Thinking of you both!

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  22. Dear Elizabeth, I was so sorry to read just now about your and Sophie's current tribulations. The past few hectic days left me with zero computer time. You touched on so much that is familiar to me, such as the frightening sense that the most senior of neurologists are just as flummoxed by all this as we are.

    Your theory about the switch to a generic hormone (which does Sophie get and for what?) seems a sound one. I hope it proves accurate.

    I wish you the strength to continue to challenge the white coat brigade and regale them with your quips. And, of course, that you and Sophie return to baseline and home in a jiffy.

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  23. I am with you in solidarity, soldier sister. Hang tough and know that you are loved. xo

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  24. I am with you in solidarity, soldier sister. Hang tough and know that you are loved. xo

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  25. Just saw this all. Sending love from across the ocean. ox

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  26. Thoughts and hopes and admiration <3

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