Wednesday, October 7, 2015

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.

16 comments:

  1. I have been thinking lately about the ability to hold more than one thing at a time in my mind and in my heart and this post is such a good example of that.
    My god- when you sum up what's happened since Sophie's been on the CBD- it is just amazing. Just miraculous.

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    1. Yes, especially when you think about what happened in the twenty years BEFORE.

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  2. P.S. You and your daughter were/are beautiful.

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  3. Sometimes, when I read here, I don't know whether to cheer or cry. Today, I am doing both. What a beautiful photograph!

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    1. We are all becoming quite skilled at both!

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  4. A local news station did a piece on medical pot. This is probably old news for you but there's a doctor in this video that seems so reasonable about the whole thing - Dr. Eric Ruby. He's a pediatrician.

    http://www.wcvb.com/chronicle/meeting-the-demand/35704074

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  5. Evie has been on Vimpat for a few years now. Early on when we were adjusting her dose we found that if her morning dose was reduced her leg wouldn't go out from under neath her. She fell several times before I realized it was the Vimpat and not a form of seizure. Then when we tried to increase the dose again, guess what, her leg collapsed again. I knew it was the Vimpat, not sure the doctor was ever convinced.

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    1. I remember you talking about that when I first noted it here on the blog. Hmmm. Sometimes when we wean a drug, the side effects worsen -- just like when we first gave the drug.

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  6. What a gorgeous and powerful quote. So glad Sophie is smiling. May it continue.

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  7. I have happy smiling photos like that of me with my daughter soon after her stroke. It's weird to look at them. I see the smile. I know the truth behind it. Still, there's that smile.

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    1. Exactly. I don't really remember that person smiling, to tell you the truth. She's there, though.

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  8. I love that quote. Thanks for sharing it with us.

    You have crazy rectal valium parties and never told me?

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    1. I bet you're really into rectal valium, right? Think about visiting and I'll throw another one.

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  9. I'm glad it is better, and that Sophie is free of more of those drugs which did no apparent good (though prescribed with good intention). The territory you have navigated without a map!
    I love that photo.
    Books and Bakes and Rectal Valium Cakes? I love your sense of humor!

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