So, here's the thing. Last week was not a good week. There was a pretty decent earthquake, a full moon, a vague virus, the bottom of the bottle of the second batch of Charlotte's Web and some seizure activity after several weeks with virtually none. The week before last, there was also an Onfi wean that The Husband forgot to tell me about. AHA! Withdrawal was probably more the reason for the increased seizure activity than all those other things combined. I think. There's always a lot of thinking going on in these parts --shallow thinking (why, why wasn't it me that had a Javier Bardem sighting in the Polo Lounge in Beverly Hills the other day***), mid-level thinking (why the hell can I not make it through novels longer than 400 pages anymore?) to highly complex thinking (perhaps I walk around and drive around in a weird state of numbness because I actually CAN after nineteen years of dealing with the adrenaline rush of constant crisis?)
Anyhoo.
I highly recommend that any of you with children with refractory epilepsy or any of you with seizures or other autoimmune diseases at all give this medical marijuana thing a try if at all possible, because the thing is: even when Sophie does seize, she recovers quickly, she's coming off of one of the most vicious anti-epileptic benzos, she's more alert overall and it really, truly looks like this is the thing. I know that hundreds of you are struggling in your states to get easier access or access at all. I know that many of you have neurologists who are perhaps more like dinosaurs than healers. I say forget them and pursue what you think will help your kid. I'm not going to even qualify that and say something bullshitty like I am not a physician and in no way recommend this treatment without a doctor's referral. Think back. Didn't I tell you not to try that fifteenth drug if it was in combination with the thirteenth and fourteenth?
This concludes today's dispatch from the Medical Marijuana Revolution.
***Probably because I have never been to the Polo Lounge. A friend of mine posted it on Facebook and I died a small death -- you know, la petite morte. There's some medium-thinking for you. Look it up if you don't know what I'm talking about.
So Sophie is able to get more alert as you are able to get less alert. Maybe it's metaphysics - the law of conservation of attention.
ReplyDeleteSomehow every time Mr. Moon goes out in the boat he sees dolphins like RIGHT THERE and sea turtles, too and do I see these things? No.
ReplyDeleteJust like you and Javier.
But. These sightings are every bit as real as Sophie's response to the CBD. I have no doubt.
And my new favorite word is "bullshitty."I can't believe I didn't come up with that one myself. I love you, though, for doing so.
This sounds like mostly good news to me. Wishing you a good week ahead! And a J B sighting!
ReplyDeleteI think you need to go hang out at the Polo Lounge a little more often! (You deserve it!)
ReplyDeleteHi Elizabeth. For me it wasn't an instantaneous, cure-all, end-all to seizure activity. Over time, however, the trend has lead me to believe it might eventually be... (At least i've veered from the almost daily to the, dare-i-say, bi-annual tonic-clonic track.) I've been waiting for an amount of tolerance to develop as with every other drug, but the same dose seems to do the trick.
ReplyDeleteI think last week was kinda wonky for almost everybody. All the best.
Looks like the Charlotte's Web is coming here to Canada sometime in May. I'm on it. Got a doc and a distributor and the whole shebang. Fingers crossed.
ReplyDeleteHow did your husband forget to tell you about the Onfi wean?
ReplyDeleteGlad the medicinal weed is helping. I had a dream about you the other night. Can't remember what it was about now but you were there. Take care woman.
It seems totally natural and right to me that you would feel numb and odd now. I've read that our brains don't differentiate between good change and bad change, making any change a stressful experience. It also seems that whenever someone we've been caring for starts doing better, we immediately start feeling worse. I think things that have been tampered down out of necessity start surfacing. So just let yourself be numb. Earthquakes, full moons, and withdrawals sound like a seizure perfect storm. And I know that pain of not being the one to spot the celebrity. I know it well.
ReplyDeleteOy, Monica! She should have called you the moment she saw him at lunch so that you could have come right over. Put her on notice for next time. I thought of you as soon as I saw the post on Facebook ;-). I am so glad that Sophie continues to respond to the tincture and I hope that you can continue to get it easily and wean her off of all the other medications. I can't imagine what a strange existence it must be for you right now. Love.
ReplyDeleteNot enough has been made of how much I've learned about medical marijuana, by reading your blog. Truly, life-changing, and I find myself somewhat of an unexpected evangelist. So, thank you.
ReplyDeleteI started the slow wean of Zoey's drug of choice. It wasn't easy to do. But I did it. It's time for the another small reduction but I just cannot pull the trigger on it. I have no Idea why? That's a lie. Fear. Simple as that. You are braver then I. And I am proud of you and in awe of you and well, maybe tonight I do the next part of the wean. I wish I had a crystal ball. Or then again, maybe not.
ReplyDeleteLove from up my way.
Praying for your girl.
ReplyDeleteThis revolutionary road is the right road. All signs point to it, despite temporary detours. Go, Sophie! Go, Elizabeth!
ReplyDelete