Saturday, March 26, 2016

Purple Day 2016

Once again it is purple day, epilepsy awareness. I was diagnosed with epilepsy when I was fifteen years old. I've had it for half of my life. It hasn't always been easy. When these seizures were first happening I was afraid of being called a freak and it was embarrassing to have something take over your body that you couldn't control.

Now that I've had more seizures than I can count I don't get embarrassed. I find it frustrating. I hate that I can't control my limbs, my brain... Things that others take for granted. Even though my seizures are under control I still stutter when I'm exhausted. I still find that embarrassing but I'm grateful that my seizures are under control. I've been seizure free since December 2008. I still see a Neurologist and probably will until my dying day, but I'm grateful for today's technology and scientists. Thankful that all these advances have been made in modern medicine.

However, I still feel as though people don't fully understand epilepsy. That they don't take their time to read up about epilepsy. It's a neurological disorder. Almost everyone knows at least one person affected by epilepsy, whether they suffer silently or openly.

So what should one do if they happen upon someone having a seizure? Stay with them. Make sure they're not going to hurt themselves and if there's a risk then move them from the threat.

One of my seizures happened at a Pizza Hut. I was eating chicken wings beforehand and was sitting in a booth with my family. When I started seizing my family laid me on my side in the booth and timed it. They also told one of the waitresses to call 911. I have no memory of any of this. I was picked up by an ambulance and brought to the ER. However, when I was fully conscious was about 20 minutes after my seizure had taken place. I remember being surrounded by my family in the ER and there was a phone in my hand. Appearantly my family had called my mother and handed me the phone.

It's not uncommon for someone who had a seizure to not have any memory of it and to feel as though they are in a fog. It usually would take me about fifteen to twenty minutes afterward to become fully conscious and aware of my surroundings.

When I had my last seizure it was in my  apartment where I lived with Jim and Kevin. My insurance had lasped and I had not taken my medication in three days. I was lying in bed and my arms were having tremors so I called my mom who was at work. Sometime while I was talking to her I dropped the phone and she knew I was seizing so hung up and called 911.

When I awoke I heard knocking on the door. It was the paramedics, but I didn't recognize them. They were talking to me and asking me questions but they may as well have been talking a different language. I didn't understand them or understand why they were in my apartment. Finally I did understand and they took me to the hospital. At the hospital I was given my anti seizure medication via IV and I haven't had a seizure since then. My husband knows how much I rely on my medication and how it keeps me healthy and alive. He has said before that he'll do whatever it takes to make sure that I have my medication and he has made good on that promise.

However, not all epileptics are as lucky as me. Not everyone's seizures are controlled by medications and so they need service dogs, they can't drive a car, and they are at risk of dying from this neurological disorder. Please be informed. We're just people who long for understanding and compassion. This disorder happened to us and, in most cases, there is no known reason or cause. Once upon a time I wasn't afflicted with this diagnosis and I didn't know what epilepsy was. Now I'm older and I know of people who have this disorder or who have been affected by this diagnosis. Do your part. Be informed. You never know when you might happen upon someone seizing or befriend someone who's epileptic.


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