Sunday, January 8, 2017

Lazarian Mermaid

this photo was not staged


You know how it goes. No matter how hard I try, I can't shake the southern Italian superstitious woman in me, so I'm going out on a limb,  and stepping out to take a risk, plus throwing in all my cards, and working every cliche in the book to say that Sophie woke up this morning like some kind of Ripette Van Winkle. She was lying in bed exactly as pictured above, looking straight up at me and humming. I should preface this by saying that, up to this morning, she has been just this shy of catatonic. That's not hyperbole. I've been in when Sophie's not well, Mama's not well mode for a few weeks, a familiar condition, off and on, that I've experienced for Sophie's whole life despite all the cultural admonitions to not tie one's identity to one's children. I threw out most of that stuff along with the book What to Expect The First Year. That book literally went tumbling down the garbage chute from the fourth floor of the walk-up where we lived the first hellish year of Sophie's life. The admonition to not allow yourself to be subsumed by your child, along with put on your own oxygen mask before putting on your child's and attend to your marriage before your children are perhaps wise and fitting, but hell if I haven't failed at both over and over and over.

Any hoo.

I feel like a new woman this morning because Sophie actually woke up making her customary sounds (she's been primarily moaning or been silent for the last couple of weeks) and looked right at me when I went in to her this morning. She was also able to WALK into the kitchen and ate her breakfast easily. She did not have a big seizure or five big seizures. She was positively cheerful.

I'm going to shift the southern Italian peasant mentality of jinxes with an attention to Gratitude for the Present. This means that I am perfectly aware that this good morning could turn on a dime (another awesome cliche), Sophie could sink back into catatonia and I to the Overwhelmed With Grief and Anger But Still Putting On a Zen Face Woman. Right now, though, she's good and I'm good. The people of this shitshow do nothing better than living in the moment.

Reader, I imagine you are wondering why Sophie has had this turnaround? I have no real concrete idea, but I am going with the fact that she was OVER-MEDICATED. Here's the thing. Sophie came home from the hospital in late October on three times as much benzo as when she'd gone in. This was to "compensate" for the ripping off of the Vimpat that was giving her hives (although the docs said it wasn't, yet still ripped it off so go figure). Increasing the Onfi was something I agreed to because there are some interesting studies about the combination of Onfi and CBD. CBD can elevate Onfi levels and perhaps the increased Onfi is what helps to control the seizures? What I'm thinking is that Sophie's Onfi levels were periodically sky-high and causing the horrendous side effects she was experiencing (ataxia, difficulty swallowing, lethargy, CNS depression, excessive drooling, inability to walk). At the same time, since she's been on the drug for the last nine years, at one level or another, she is habituated to it and therefore sees very little seizure control. Basically, being on a benzo is a clusterfuck of enormous proportions. I was texting a fellow seizure mother this morning about it:

What a fucking shitshow and goddamn clusterfuck, is what I said. I'm not going to apologize for the foul language because it's entirely appropriate. I also told her that while I was going to work on weaning more of the benzo, I wouldn't wean myself from cursing about it.

In fact, I said, I'm titrating up on the cursing.

I'm going to have to figure out what the perfect sweet spot of benzo and CBD is, and that'll take some time. But hey! I have all the time in the world if I put that oxygen mask on first, right, and take care of myself (as this Australian article emphasizes).


25 comments:

  1. I don't understand most of what you said except for the fact that Sophie is better, therefore you are better!! Therefore, I am glad!

    Best,
    Bonnie

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  2. You are fucking awesome. Keep that shit up!

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  3. I just love you so so much. You go mama. Titratrate tat cursing up. I'll never forget your words. I'm glad Sophie is better today. I love that picture of her.

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  4. Yes, I'm all for upping that cursing. And I am delighted that Sophie and her Mom are feeling better today. May that continue for a very long time.

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  5. I'm considering attempting to downsize my cursing quota, but I am fully in favour of you upping yours. I hope this coninues - I agree that documenting the Now should not count as jinxing. Shit, if it did we should all just hide in a cupboard.

    Oops.

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  6. SO GLAD for this good report. (She had acupuncture this week, too, didn't she?) I love you and your beautiful, brave, mermaid. (Keep cursing.)

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  7. Hello, Sophie! It's marvelous to see you again!!!!!
    I am so cheered to hear this. I love and adore you both. You are brilliant. You know that, right?

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  8. when i saw the title of this post i hoped this was the news you were going to give! so happy to hear sophie's coming around, even as you switch between your mom hat and your doctor hat--oh right, you wear them both all the time. i hope you are able to find the exact right dose of everything, medicinal and otherwise. love.

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  9. Sophie girl shines forth!

    I dropped an F bomb with a client a few days ago. I don't think she noticed.

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    2. I just love you, plain and simple.

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  11. Foul language is entirely appropriate. So glad she's better!

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  12. Titrate up the cursing. Good plan. Glad she is feeling better. <3

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  13. I'm glad she's better. When she's better, you are too, and I'm glad of that too. It's a moving target, you know, that sweet spot, but hope you find it and stay there for a bit, and I hope it changes to less drugs, less seizures, less apathy for Sophie

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  14. I'm so Glad you've had a positive upturn and she's doing better right now. The people of this shitshow in Mi Vida Loca do nothing better than living in the Moment as well... and Celebrating any and all positive upturns no matter how brief and fleeting! Now that I actually looked up and know what titrate up means *winks*, by all means titrate up the cursing! I've been dropping the F Bomb fairly frequently lately, always a strong sign that my Caregiver Stress levels are elevated and in need of a release valve... having one completely off his psyche meds now for the first time in a decade has been unfamiliar ground to tread... but we're doing Okay. The Man's Mom passed away a couple days ago and he was having major TBI Anxiety Attacks even thinking about going to the Funeral, so he didn't, and to me that was Okay too... and any extended Fam who have a problem with it... well, it's their problem. *Winks* Happy New Year and I'm Happy YOU are doing better knowing she is doing better. Virtual Hugs... Dawn... The Bohemian

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  15. I see no other option than to titrate up the cursing. Makes perfect sense to me.

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  16. Fucking shitshow and goddamn clusterfuck -- LOL! I love it.

    Well, I shouldn't LOL, because I know this is a serious situation. But I love your rebellious spirit in the face of it.

    I think the overmedication theory certainly sounds likely.

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  17. Clusterfuck and shitshow are friends of mine. Glad for today's shift from Sophie!

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  18. what a joyous morning surprise! Walking and cheerful -- WOW. It's always such guess work as to why and how changes occur. Could be meds, could be disease progression, could be the alignment of the freaking stars.

    Keep up the cursing. It's a great way to blow off steam (see, another cliche).

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  19. The oxygen mask metaphor is frustrating to me. I've heard it before, but it sure does go against the grain. I simply can't imagine the challenges you face in having the simplest of your own needs met. Freely swearing must be a form of self care. I'll try it myself, since I can't see taking a pilates class anytime soon.

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  20. I'm so glad to hear about Sophie's sudden return from her near-catatonism - and even humming! I hope you pinpoint the cause and achieve yet further improvement.
    P.S. I'm sure we'd never survive all this without cursing.

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  21. Dr Jin plus the sweet spot. Yes.

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