Seizure Update

Here’s a “quick” seizure update. I was going to include it in my next post “Seizures: Not Quite As Extreme As Smiting, But Kind of Similar” but it got too long. So for those of you who have been curious about what’s going on, this should bring you up to date. And then you can come back later this week and we can debate whether or not God is using the neurological equivalent of lightning to try to tell me something.

Seizure update: I’ve had four “big” seizures and one “little” one in just over 8 weeks. Three of the four big ones have been in the last four weeks. They did an MRI after the first seizure. There was a “spot” on the MRI. They thought it was a weird shaped vein. Apparently these things can suddenly start (and stop) causing seizures for no reason. I’m on antiseizure medication which isn’t really working so far.

If the seizures are being caused by a structural abnormality in my brain they normally wouldn’t be accelerating like this. On the other hand, random bouts of unconsciousness and taking drugs that make your brain move at half speed is a really stressful combo and stress can trigger seizures. So maybe it’s the vein thing plus stress.

They can’t tell until I have another MRI and they can compare the two. That’s supposed to give them more information about the other things it could be (which are mainly bad, but it’d be better to catch something bad that exists than to think it was the vein thing and find out in three months that we were wrong and missed something we could have fixed… so this is a positive thing).

My next MRI got pushed up to Wednesday, July 3rd at around 1 pm. (Happy Birthday Kelsey Moss!).

That’s pretty much it for now. Except that if you haven’t read this post about what to do if you see me have a seizure, you probably should because it’s seeming more likely…

If you have too much time on your hands and want all the gory details, I’ve tagged all the seizure posts under the category seizures so you should be able to just click “seizures” at the end of this post and it’ll give you a list of all the previous related posts.

What you can do: Everyone keeps asking me this and I’m horrible at answering it in any meaningful way. I’m actually learning a lot about how hard it is to be on both sides of this whole “helping” thing and will do a whole post on that later, but in the meantime here are a few things you can do (if you can’t resist the urge to do something):

  1. Be flexible. I’ve been canceling, rebooking, double scheduling, and just generally being flaky for the past eight weeks. I have less energy than normal, can’t drive to get my normal stuff done, and already had a pretty serious overbooking habit so my schedule has become somewhat of a train wreck. If I have to cancel on you, please don’t take it personally. I’ll take all the grace I can get in this area.
  2. Offer me a ride. When you have had seizures, you can’t drive for a while (a very, very long while… basically ever for the purposes of our current discussions). And as much as my quads and I love biking places, there are some places where you shouldn’t arrive covered in sweat and high on endorphins. Side note: There’s a chance I’ll decline your offer. Don’t take that personally. It’s probably because I keep getting 500 ride offers for one thing and none for the other thing so I probably already have a ride to whatever you’re offering me one to. But maybe I don’t.
  3. Plan something normal for us to do. I spend a lot of time thinking about and talking about seizures. That’s because I have a lot of people in my life who love me and who are trying to help me figure out the best possible way forward, which is a good thing. It’s also because I’m a little obsessive about problems and like to circle around and around and around them hoping to discover a new solution, which is not as great of a thing. Either way, I’m spending a lot of time on seizures. So if you want to hang out, let’s do something where we don’t sit and just talk about seizures. I know you want to listen and help and understand what’s going on, but frankly sometimes we’re both going to be better served by just doing something normal. Like biking around Lake Calhoun. Or going to a winery and wandering around. Or watching chic flicks and doing makeovers like we’re 14. Or going to get tattoos. Use your imagination.
  4. Send me something. (That sounded demanding. But everyone loves mail, right? And I feel like it’s low pressure. If I were on the other side of things, this might satisfy my craving to help. So I’m throwing it out there. Don’t feel like you have to send me something. I’m just trying to be helpful. If you can’t resist.) My favorite things to receive would include (off the top of my head and in no particular order):
    • Mixed tapes (on CD…. I obviously don’t have a tape player).
    • Anonymous flowers or plants (preferably of the yellow or orange varieties).
    • Cards written entirely in quotes from other writers (I have yet to receive one of these…).
    • Books, preferably used (Anything on writing or by Vince Flynn / Lee Child / C.S. Lewis / Brad Thor / James Rollins or a surprise. Goodwill has paperbacks for $2 and they always have the original 90s version of cover art, which is usually endearingly horrid.)
    • Neon socks (I never have enough socks. Or enough neon things.)
    • A case of bottled water (this sounds weird, but it’s actually the most practical one because it’s easier to take my medication when I have water bottles in my room… and cases of water are virtually impossible to carry home on a bike. Also, this is heavy so don’t send it to me. But if you were driving by and dropped one off on my porch…)
    • Good coffee (I go through a lot of caffeine these days.).
    • Moleskine journals (Ahem, the kind with lines please. I don’t know who those crazy people are who like to write all over the blank ones but I’m not one of them.)
    • Guitar picks (Preferably sparkly or rebellious looking ones. I just started taking lessons.)
    • I can’t really think of anything else at the moment, but anything that falls into the useful, pretty, blue, or funny categories would be awesome. It’s seriously the thought that counts here. For example, if you send me something expensive and boring, I will feel guilty and want to throw something at your head. But if you send me something cheap and hilarious, it will make me smile and feel cared for. So go for the second option.

End of seizure update.

If there’s something in particular that you want to know and that I haven’t covered, feel free to ask in the comments. I tried to pick the top 5 details here out of about 100. Like I said… it gets hard to keep straight what is relevant and to whom. But I’ve been really blessed by all the support and kindness I’ve received from people throughout this process so far. If I failed to say it in person (and I’m sure I have), thank you to those who have been there. Seriously.

Advertisements

One thought on “Seizure Update

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s