I've been a lousy blogger of late, writing fewer posts, slacking on my replies to comments, not commenting on my favorite blogs - delinquencies for which I feel moderately remorseful. It's not that I've been so very busy, or at least not busier than usual, I just simply didn't feel like writing a gloomy post about the vengeful return of Izzy's nonstop seizures, especially not when everybody is so full of thankfulness in the cinnamon scented hallway of Thanksgiving. However, it's hard to concentrate on anything other than the accursed seizures when Izzy has a drop attack every ten seconds, and no matter how much I try to think about happily hopping unicorns, beauteous butterflies or ravishing rainbows, I still want to kick something hard or forcefully smash my head into the suction machine. Tomorrow we are going to see our neurologist who will most likely crank up the VNS again, which will hopefully yield the previous seizure eliminating effects and we can enjoy a little intermission before these cursed electric brainstorms return. I wish I was more hopeful and I believed that there was some magical solution out there, some new medication, groundbreaking method, magic potion or some holy water that eradicates the seizures once and for all, but I'm kind of jaded and we are kind of running out of options.
9 comments:
Don't worry, we don't celebrate Thanksgiving on this side of the Atlantic, so we're not full of thankfullness. Not a whiff of cinnamon anywhere. So you don't have to feel guilty about writing what's dominating :)
((hugs))
Phew, I totally understand that you do not feel like writing under these circumstances. :-( I am so very sorry to hear that the seizures have returned in such intensity. As I am not familiar with seizures I thought or hoped that once Izzy had the VNS device they would stop or at least be reduced to a minimum. I so wish I could do something to help you!
Sending big hugs your way!
Beate
Erika, this really does suck! Personally, I would rather hear the real from you, it's one of the things that draws me to love you guys even more (if that's even possible). I just want you to know I'm hating this along with you.
Would it be helpful if I began trying crazy rituals at home to stop them? Like maybe dancing naked in the rain? Or standing on my head while chanting "seizures be gone"? ;-)
I'm with you -- on the seizures, on the return, on being totally tired of it all. Except that unlike you, I still keep slogging it out. I think I might try your tactic and not write.
Sigh.
Sending hope and energies for a blissful Tuesday....
I seem to know so many mothers who are just ground down by yet another onslaught of seizure activity in their kids. Sleep-deprived, enraged,
anguished. May cranking up the VNS give you and Izzy some relief.
You're all always in our thoughts-- that sounds rainbow- and unicorn-ish but is really, really, really, really meant.
Someone at work, on hearing about Charlie's woes, asked me if I lose sleep over them. I didn't have an answer because, as I realized later, I don't really sleep much, or sleep at all -- always have an ear out for him.
Hopeful about the neurologist visit.
Most of the AS kids grow out of their seizures as they get older. Hold onto that glimmer of hope. You're doing an amazing job because what you're dealing with is so hard.
That sucks. And no cinnamon down here in Australia. We're not thankful, apparently.
Hope things perk slightly for you. xo
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