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).

Realm of Caring Newsletter

It's the last day of the year, and in lieu of the usual lists and hearkenings back and rueful confessions and regrets and moans and groans and hopeful looking forwards, I'm going to leave the link to the Realm of Caring's most recent newsletter. Most of you who come by here (thank you!) daily know that the Realm of Caring is the non-profit organization that has been instrumental in educating the public about the positive effects of cannabis, particularly for those children who have refractory epilepsy. What you might not know is that there is a fairly sizeable group of people (in addition to those with conservative "values," the government's anti-drug zealotry, the medical world's obduracy or those who are just plain ignorant) who not only object to cannabis for the usual reasons, but who object to and accuse the people from Realm of Caring, including the Stanley Brothers (who grow and produce Charlotte's Web), Paige Figi (Charlotte's mother) and even little Charlotte herself, as charlatans.

They've all been subject to negative and venomous remarks, to untruthful accusations, to hate mail, to harrassment and even death threats. Yes, even little girls get death threats when their mother is working tirelessly to get medicine to other children like her own. I think the only way to counteract the naysayers, the crazies and the angry is to provide the truth of one's own experience, and our truth is that Realm of Caring has been nothing but supportive and professional in its dealing with us and that their "dealings" are nothing like the usual business of epilepsy. I mean that. Of course, there's also the fact that Sophie has dramatically fewer seizures going into 2015 and is on nearly 50% less medication than she was going into 2014, all due to Charlotte's Web and Realm of Caring. Despite its prodigious capacity, my imagination stops short at expressing what this year might have looked like if Sophie hadn't tried Charlotte's Web.

Here's the link to the newsletter, filled with exciting news and infographics as well as interesting articles that will educate you about what's going on legislatively. Oh, and there's a blog post included written by yours truly -- an incredible honor for me!

Highlights and Updates From the Realm of Caring 

Medical Marijuana Update: Part 6,749,234 in a series

I participated in a webinar today with a national epilepsy group for which I've worked for many years. The guests were Josh Stanley and Page Figi, both Coloradans featured on the recent CNN special titled Weed. Page is the mother of the little girl Charlotte whose refractory seizures have been dramatically reduced since she started taking the high CBD medical marijuana that the Stanley brothers produce on their farm in Colorado. There were only a few of us on the call, and it was very spirited. I'm not sure how the other parents on the call felt -- some were from states that criminalize marijuana, so their chances of even trying the stuff are quite slim -- but I felt like I was pulsing with electricity. The feeling reminded me of the enormous rushes of adrenaline and probably cortisol I've felt over the years whenever the prospect for a new treatment for Sophie arose. Even if there's great hope attached to that prospect, it's still stressful and uncomfortable, and I felt, for much of the day, as if I were jumping out of my skin. I think all the mindfulness meditation has actually made me acutely aware -- mindful -- of the effects of stress on my body. I'm not talking about the literal weight that has accumulated but the actual physical characteristics of stress: my racing pulse and heartbeat, my brain quick and poised, my thinking sharp, my ability to articulate heightened emotions, and a gnawing feeling in my stomach that has nothing to do with hunger.

I've felt like that for much of the day, mainly because I am frustrated by the overall inaccessibility of this product for our children and because I am excited that it might very well help Sophie's seizures. Throw in the fact that we're at the forefront of something that could very well be revolutionary for people with uncontrolled epilepsy -- well, you should understand that state of my nerves.

Did you know that many of the children who are using it successfully have been weaned from their AEDs?

I don't even want to type that in a normal font it's so outrageously wonderful.

I have to settle down, though. I have to be patient. Josh Stanley said that maybe, quite possibly, the high CBD stuff would be available in California by the end of this year and certainly by the beginning of 2014. He spoke about education and advocacy. He cautioned about activism. It's a process, and it's happening.

Help me wait. Talk me down. Still my heart. Unshiver my skin. Bandage my wounds. Lay me down.

Anti-Suffocation Pillows

photo via trendir.com

As you know, I am prone to subverting emails that carry horrific information by opening them, reading them, digesting them and then coldly and methodically mocking them. Said horrific information includes nearly everything related to epilepsy, particularly SUDEP, that lovely acronym for Sudden Unexplained Death in Epilepsy Patients. And while I'm enough of an Italian -- and a southern one at that -- to have embedded in my genetic code a proclivity toward deep suspicion and a concomitant belief in the power of jinxes, I use sheer willpower to over-ride those impulses and get down to it.

Let's discuss.

Today's horrific email came, once again, from a wonderful website dedicated to all things epilepsy, epilepsy.com. The lead article is titled Electric Shutdown of the Brain: Is It A Cause Of SUDEP?. Now, if you've been a reader of this blog for any amount of time, you'd know that this is a subject that quite literally strikes fear into the heart of a parent of a child with uncontrolled seizures and a person who struggles with seizure control. And up until quite recently, information about SUDEP was relegated to hushed whispers -- there was very little information at all until, I believe, a group of dedicated families in England started shouting about it. It wasn't until very, very recently, in fact, that there has been a positive plethora of information about SUDEP -- not so much answers or cures or huge understanding of it -- but recognition and awareness about it, along with suggestions for prevention. In any case, I clicked and opened the article, scanned the contents in a vain attempt to find anything new and -- actually -- found something new.

Anti-suffocation pillows.***

I don't think you need me to explain what anti-suffocation pillows are, but I did go onto the UK website and will be ordering a couple very soon. When I do these things -- open emails about sudden unexplained death in epilepsy patients (SUDEP, again!), note my own daughter's high risk of SUDEP (override the Italian peasant jinx mentality in seeking information!), scan for information that I don't already know (why, why, why don't they know more about these things?), skip over to foreign websites about anti-suffocation pillows (!!!!!!!), use a Coin Converter to see how much said pillows cost in U.S. Dollars (cool tool!), wonder if the material they use for the cover is gross, imagining some kind of thin, motel paper like consistency (feel sheepish that aesthetics trump survival for an instant!), wait to order because the pillows are so expensive and I have to do some financial juggling, first (what if she dies before I order the pillows!) -- well, I am struck by the absurdity of this life I lead (and others like me) and filled with gratitude that I have a sense of humor that often trumps panic and paralysis.

Or should I say suffocates panic and paralysis?





***Anti-suffocation pillows available to order HERE.