Living with Epilepsy

Some of you that know me do not know that I have a disability. A disability that I have been told, is not a disability. A disability that sometimes makes it difficult for me to function. A disability that affects my everyday life. A disability that has begun to affect my memory so bad that I am finding it difficult just to remember the most mundane information, let alone my children’s childhood. Epilepsy is a disability, it is not just seizures that you can see, it’s what goes on inside the body as well. It is also the after affects that people don’t understand, unless you deal with it daily.

You see, many many years ago, when I was married to my first husband there was a night that he became the most abusive. He shoved me into the stove so hard that I thought I broke my arm, it wasn’t broken, but the muscle is forever damaged. And if that wasn’t bad enough, he chose to then punch me in the back of the head. He punched me in the right side of the back of my head. I lost consciousness. I’ve experienced deja vu since high school and Epilepsy runs in my family. But my neurologist is leaning more towards my Epilepsy not being genetic but due to Traumatic Brain Injury, due to my him punching the back of my head. In doing so he damaged a part of my brain that controls my memory, called the Hippocampus. For those of you wondering, no I did not leave him at this point. You can read more on this story in this blog post

I didn’t have any Tonic-Clonic seizures (aka grand-mal) at that time. Although, I was having a lot more deja vu sensations, which I would find out later on from my Neurologist that this is actually seizure activity.

Fast forward to 2012. I was cleaning the garage and stepped on a rusty nail. It went almost through my foot. I had to go to the doctor for a tetanus shot and they also gave me Tramadol for the pain. I didn’t want to take medicine, but there was a hole in my foot and it was hurting pretty bad. So I took a dose and laid down. Next thing I knew my husband was on the phone with my dad and I was on the floor. I had no idea how I ended up there and my entire body was tense and sore. I eventually was able to gain enough consciousness to realize that I had bitten my tongue. I went to the neurologist a little while after that. They were able to regulate the seizures for a little while.

However since 2012, I have had 4 Tonic-Clonic seizures and too many Simple Partial/Focal seizures (Auras/Deja Vu feelings) to count. I have even had a weeklong hospital stay where they’ve take me off of my medication to force a seizure. And while I did not have a TC seizure, I did have quite a bit of seizure activity. We’ve tried about 10-12 different medications and they’ve either not worked or I have had an allergic reaction to them.

I had an appointment with my doctor last week because I have been living a nightmare lately. I cry silently because I can’t remember a lot about kids growing up, thank God I force them to take so many pictures. I have been having multiple Simple Partial/Focal seizures a week. And with each one my memory fades even more. While at my Neuro appointment last week I was informed that I am running out of options, because the only reason those aren’t TC seizures, is because I am taking my medicine. We are trying a new combination of medication. If that does not work then we are going to try one more medication. If neither of those work then I will have to have surgery. My Neurologist wants to remove the right temporal lobe of my brain and possibly the Hippocampus depending on the damage.

Not only does Epilepsy affect my memory, but my anxiety & stress has increased, I have more headaches, am tired more often, have more mood swings, there are days where my body just cannot function. So if you see me having an ‘off’ day or I’m not my usual bubbly self please don’t take it personally.

What I have learned from this disability is that just because you can’t see someone’s disability does not mean that they don’t have one.

Also there is unfortunately times where this disability claims the life of people that we love and adore. And unfortunately it does not discriminate against age, we lost a young lady in our community to this awful disability. We need to raise more awareness for Epilepsy, and not just in November.


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