Epilepsy Awareness Month & a Linkup

Dress: Rebellia

Epilepsy Awareness Month

If you’ve been here for a while, you might remember that November is Epilepsy Awareness Month due to me posting about it.  That’s why I’m wearing purple in today’s outfit post.

Hi, I’m Monica, and I’m an epileptic.

Hi, I’m Monica, an epileptic who did not let this condition take over my life.  I would be lying if I said it wasn’t hard at times, but I still kept going.  Epilepsy can be difficult and annoying to live with, but I didn’t let it stop me.  When I was in high school, it was not too long before graduation in 2005 that I had my first seizure.  At the time my parents and I had no idea that it was a seizure.  We thought I had just passed out from being a teenager who was sleep deprived and stressed out.  All I remember is waking up for the senior class trip and trying to put my earrings on, then I somehow woke up in my bed.  I had no recollection of what had happened.  I had my second seizure right after Project Graduation.  If you’re unfamiliar with what that is, it’s when all of us seniors went to a YMCA after graduation.  We stayed up all night, because for some of us, this would be the last time we ever saw each other.  In my mind, I was thankful for that because high school definitely wasn’t “the best 4 years of your life” for me.

What is happening to me?

I had a seizure while I was on the phone with my friend, and this was when cell phones first started to become a “thing.”  My friend called the land line to get a hold of someone in my house.  To this day, my brother is still traumatized at what he had found after that phone call.  He found his sister on the floor, bleeding because I had bit my tongue really hard.  He got me back in bed and called my parents to come back immediately.  I woke up hours later to very worried parents and a brother who looked to have been crying.  I had bruising all over my body.  When I had this seizure, I somehow managed to fall into my bed post resulting in a black eye and bruising all over my arms.  I’m so thankful that it was just bruising, because I could have very easily lost an eye or even died depending on how I could have fallen.

We went to the my regular doctor and after hearing what had happened, he referred us to a neurologist.  This was a really scary time, because it was all a mystery.  What could possibly be wrong with me?  All I wanted to do was be a normal teenager who hung out with friends all summer before starting college in the fall.  This was supposed to be my time to have fun before I went on to become an adult.  Unfortunately, after going to the neurologist, we received the news.

The diagnosis.

The neurologist uttered the words, “You have Juvenile Myoclonic Epilepsy.”  He then proceeded to scare the living shit out of my parents by saying that my brother is going to have this condition too.  Almost making it sound like this was contagious.  Thankfully, he doesn’t have epilepsy.  After that doctor’s visit, I was put into a hospital for 48 hour monitoring to test exactly what was the cause for my seizures.  While they were able to figure out which type of epilepsy I had based on my EEG’s and what I described, they wanted to see what my triggers were.  I couldn’t sleep for 48 hours because, as scary as it was for me, they were trying to force me to have a seizure.

They performed all sorts of tests.  I was hooked up to an EEG for the full 48 hours, but they did the strobe light test, among other things.  My dad stayed with me the entire time.  You see, it’s kind of become tradition, because when I was younger I was in the hospital for a long time due to having pneumonia and an asthma attack that caused me to stop breathing and according to my parents, I turned purple.  I was in second grade.

Well, he was keeping me awake the entire time by either talking to me or watching movies, and of course, eating my peanut M&Ms with me the entire time.  Every single time I go to the neurologist nowadays, I always make sure to have a bag of peanut M&Ms waiting for me to eat, just to feel a little better.  While my seizures are controlled, every time I go to the neurologist, I do get nervous in case something has changed.

Even though the hospital tried to force a seizure, of course my body is just as stubborn as my personality, and I didn’t have a seizure until I came home.  This time around I tried to control it, which was the worst thing I could have done in that moment.  I woke up to being so extremely sore, more than the last two times.  When you have a seizure, it takes a lot out of you.  It takes me about 24-48 hours to fully recover from one.  That first 24 hours is me sleeping the entire time.  My husband compares what happens to my body as the blue screen of death on a computer.  The computer is overworked, and needs to reboot.

Starting College.

I wanted to live as normal of a life as I possibly could.  My dad and I had a conversation (which he probably doesn’t remember, but I do) while we were driving in the car.  He had asked me if I was sure that I wanted to start school, or if I wanted to maybe wait a semester.  My dad even brought up talking to a professional about what’s going on with me mentally, in case I couldn’t talk to my parents.  I think the reason why he mentioned that part is because every time I wake up from a seizure (I still do this, until this day) I cry really hard.  I feel as though I’ve failed my body, that I did something wrong to trigger this.

I told my dad I wanted to live as normal as I possibly could, and that I wanted to start school in the fall.

What’s happened ever since then?

Well, I have had plenty of seizures since then.  I’ll leave some Youtube videos linked below that I made last November on my channel if you want a more in depth version of what my experience was like.  One of which includes the seizure that almost killed me.  However, since moving to Florida, I found a really great neurologist, who was able to switch me to generic.  I had been using the brand name medication for years due to one of the many neurologists I had been to.  This neurologist was actually my favorite, but he didn’t want to test out switching to generic.  The reason behind this was because the one time that the pharmacy had changed my brand name to generic I had a seizure.  I think it’s because of the very extreme change, because once I gradually switched to generic here in Florida I was ok.  I wanted to switch to generic because the brand name was extremely expensive.

However, I’ve been ok *knock on wood*.  I’ll be seizure free for three years this year.  My last seizure happened on Thanksgiving of 2017.  I’m not writing this post to have a pity party, but to use my voice to spread awareness.  I want anyone who comes across this post to see that I didn’t let my epilepsy stand in my way.  It was INCREDIBLY hard at times, and I’m still scared every single morning that I wake up (my seizures happen within the first 15-20 minutes of waking up).  I even have to text my husband every morning that I’m alive, and there have been times where I’ve slept through my alarm and my husband has been on his way back to the house to make sure I was still alive.  However, while it may be an inconvenience and I may be scared, I didn’t let it stop me.  I went to college that semester in 2005, I went on to get my MBA.  I’ve worked in corporate America, and now our family owns not just one, but two businesses.  I create content here on my blog and on Youtube.  I’m married and have two crazy little pups that watch over me.  My husband told me that during my last seizure the both of them were trying to help him while I was having a seizure, and they were by my side while I slept it off.

I’ve been able to live my life.  I will continue to do that until the day I die.  My one friend Dan, who this blog is actually dedicated to, passed away when he was 28 in 2013.  Unfortunately, he had lost his battle with cancer.  In the short time that we reconnected since we went to college together he taught me to live every single day as if it were your last.  Enjoy the life you have, no matter how hard it can be at times.  He was slowly dying when we were hanging out.  However, he still went to dinner with me one last time at that diner in our small town and had chocolate chip pancakes to celebrate me getting my first “big girl job.”  As Ralph Waldo Emerson said, “It is not the length of life, but the depth of life.”

Let’s move on to the linkup!