I've been getting ready the last few days for an event coming up in my life. On Tuesday I'm going to be a guest in the Epilepsy Unit, and my stay will be 5-7 days. I've already told my husband that the Easter Bunny is going to need to find me there!
I will have electrodes attached to my head during the entire stay in order to a continuous EEG. It's quite a process! I went in search of scarf yesterday, and Jerry and I managed to find a bright pink one with some rhinstones here and there. You see, I have been through this before, and my head is not a pretty sight with all those wires and glue. It's pretty important that I have something over my head. This time I'll be sure to bring my soft pillow, too, because sleeping isn't very easy either with wires attached on the head! ;)
If you haven't figured it out by now, I have epilepsy. Since February 3, 1977. As far as illnesses/conditions goes, this has been okay - really! I was blessed to have been put on a good medication and be seizure free for 21 years. I went through 6 years of some bumps and difficult times. What I need to say about those years - 1998 to 2004 - is that even though they were hard and yucky and filled with seizures, they made me stronger. They made me happier for what I have in the moment, and they made me realize that there is no time to take one moment for granted.
In 2004, I was implanted with a medical device called a Vagus Nerve Stimulater - VNS. It was a last ditch effort before brain surgery. I had had all the testing done for brain surgery - and WOW - what testing that was! One test put half my brain to sleep at a time and testing each side of my brain while I was awake. Weird huh? During another doctors had to insert long needles into my cheekbones to map something in my brain (Yes, I was awake. Yes, it hurt.) Anyway, there were so many, many tests!! But my doctor (who I always say was sent by God) asked if I wanted to try the VNS before brain surgery.
Let's see...brain surgery or metal in chest...I decided on the VNS, of course!
And it has worked so well for me! After the doc got it adjusted (and you can hardly hear it in my voice),I stopped having seizures. But last year they started again, and now it's time to do something again. And this time they are accompanied by nagging memory loss, difficulty remembering words, and bad headaches.
I thought when I went into the doctor last week that she would adjust my VNS or bump up my medicine. She surprised and saddened me when she told me that I had to go into the hospital. But I've had this long enough to know that there is no quick fix. So I get to be attached to wires so that I am electrically monitored and then I'll also be video monitored. Thus my own reality show - LOL!!
I'm taking a leave of absence from CTMH for a few months in order to get everything straightened out. I do plan on enlistening some help, however, and having some kind of small Open House in May. I want everyone to get their new Idea Book! It's such a good one!! You'll get a postcard and e-mail from me when I've set a date.
I hope this helps you understand a little a little! You know I just don't tell people that I have epilepsy because 1) it's been a part of who I am for so long that it's second nature to me!, 2) it's not a weakness or hindrance, and 3) it just plain doesn't come up!
There is a great new star-studded website - http://www.talkaboutit.org that gives a lot of information. I hope I've helped you understand my situation a little!