Wednesday, March 16, 2011

Closer to the Heart

Anyone who knows me even a little bit knows that I have epilepsy, and that epilepsy awareness/support fundraisers are a cause that are close to my heart. But are you aware just exactly how close to my heart? One year ago today, on March 16, 2010, a surgeon cut into the left side of my chest and made a pocket to hold the generator for my brand-spankin' new Vagus Nerve Stimulator (or VNS, for short.) Attached to the generator is a wire that runs up the left side of my neck, wraps around & attaches to an electrode on my vagus nerve. Yeah, that's right: they used a a big metal stick that's actually called a tunneling tool to make a "path" from the incision in my neck to the generator in my chest. The generator sends a 30-second electrical impulse to my vagus nerve every five minutes. The interval between impulses can be adjusted, as well as the duration of the impulse, and the strength & frequency of the impulse-I've had the strength/frequency of mine adjusted twice to make it just a bit stronger, and yet mine is still set to much lower levels than most people.

One really awesome thing about the VNS is that if you get any type of warning before you have a seizure, like an aura, you can swipe a strong magnet across your chest to possibly shorten/stop the seizure, or shorten the recovery time afterwards. Well, I don't get any type of warning, I just wake up with people talking at me, while I go *blinkblink* "what?" "huh?" until what happened finally sinks in. (It's especially fun when it happens in the shower & you get to take a naked 14-mile ambulance trip, or when it happens while you're already in the hospital, in the process of changing your clothes & wake up in a tiny bathroom with 3 people staring at you while you have no pants on. Good times!) So even though I don't get a warning, my family has been able to swipe the magnet & shorten my seizures and post-ictal time, which ROCKS! And now my 6 y/o daughter, (who is still afraid of thunder) talks so matter-of-factly about my seizures, that the last time I had one, she went to get Hubs & said, "Mommy's having a seizure." in pretty much the same tone of voice as "Mommy's having a sandwich."

A few weeks after I had my surgery, someone exclaimed to me "Oh no! With those big scars on your neck & chest, you won't be able to wear low-cut shirts anymore!" I just laughed. I mean, I don't tend to wear really low-cut shirts anyway, but right after a surgery that would hopefully change my life, that wasn't even something I was at all concerned about. I knew in time the scars would fade to some degree-I wasn't sure how much, since I'm so pale that I think they invented those new 100 SPF sunblocks after being blinded by the sun reflecting off my skin. However, even if they stayed bright pink, I'd wear whatever I want...and I do...because I've earned those scars! And if anybody points & stares, or whispers, or acts shocked that I'd show them, I'll just tell them "Knife fight...the other guy was my epilepsy & he lost."

BTW: International Purple Day for Epilepsy is March 26! The National Walk for Epilepsy in Washington DC is March 27, and I'm a virtual walker this year. The Epilepsy Foundation of Kentuckiana will have their walk in Lexington on June 27 and this is team One Small Stepp's 3rd year participating.


MeganMR said...

I had no idea you had the VNS. How awesome is that?!? Agreed about the scars, a scar is nothing in comparison to the life changing devise you now have. If you want to decrease the appearance of the scar use vitamin E oil. I did on my shoulder scar and it really helped. I use Mederma on Jesse but I really don't think it's done much.