May 18, 2017 Latest post:
Oct 22, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
As most of you know, I have had epilepsy since 1994 that has been uncontrolled by medication. I have Temporal Lobe epilepsy so it's quite possible you've seen me having a seizure and not known it since I do not lose awareness or have convulsions. My epilepsy has been causing memory loss for quite some time and it just keeps getting worse due to the fact that where my seizures stem from controls memory. The only way to stop the memory loss is to stop the seizures so I have been going through tests that will lead to brain surgery. Doctors will remove the part of my brain that is causing the seizures and along with it, the memory issues. My neurologist explained to me that she can't give me back my memory but she can stop the loss where it is. So, if you've ever told me something and I've forgotten...please know that I was listening, I just honestly forgot.
In March I was in the University of Kansas Medical Center to undergo 24 hour seizure monitoring. They took me off all of my seizure medication and waited for me to have a seizure all while hooked up to EEG monitors and on video. The purpose of this test was to pinpoint where the seizures are coming from more precisely. I have only ever had 1 Grand Mal seizure and it was in 1994 but on my 4th day in the hospital I had 4 Grand Mal seizures in 12 hours. It was surprising to the doctors because I don't have that type as well as a shock to me. As scary as it was, it's what we wanted to happen. I don't know why I had the big ones and especially so many of them but the doctors saw what they needed and I have moved on to the next step. Many people think I'm sick and I'm not, it's just my epilepsy.
I wanted to get this out there so everyone knows what's happening straight from me. I'm not sick, it's just a broken brain. Please don't feel sorry for me, it's just another thing and I like to think I'm tougher than the average bear :) 2 heart surgeries made me so. I know that God has me in his hands and as I walk this path I know who's in control.