Julianne Raymond’s Story
My name is Julianne Raymond.
The picture that I added is of me, my mother, and little brother the day after I had my first tonic-clonic seizure. I was 16 at the time and on vacation in Denver, Colorado. I had the seizure as soon as we got to our hotel room. I was immediately carted to the hospital and hooked up to an IV. The doctors there associated my seizure to the change in elevation and my dehydration. However, a week later once I returned to Gainesville, I had three more seizures. I then went and had an MRI and EEG and was diagnosed with Epilepsy. My neurologist nor my family had no idea where my epilepsy came from. There wasn’t a history of it in my family and I had had no severe head trauma that we knew of. But things suddenly made sense. I used to space out, constantly. My family nicknamed me “Airhead” due to that. Little did we all know I wasn’t “spacing out” but rather having seizures.
My neurologist first placed me on Topamax, also known as “Dopamax” for the effects it has on its prescribed. I continued to have seizures. 98% of my seizures are in my sleep, so sleepovers became a difficulty. Thank goodness for great and understanding friends. My neurologist then prescribed me Tegretol. That was my game changer. I finally became in control of my seizures and got my license the summer of my senior year of high school. My neurologist then decided to switch me over to Cepra, also known as the “angry drug,” because it had fewer side effects than Tegretol. I began having severe mood swings, ask my mother, and relapsed. My neurologist then switched me back to Tegretol and I decided to switch neurologists. I now have a great neurologist and am currently taking Tegretol XR. I am under control and finally understand my body and the importance of taking care of it and listening to it. For years, I battled with myself. I wanted to be a “normal person.” I wanted to be able to stay up all night and party all day. I wanted to lead the life of a stupid college kid. Because that’s what I was, after all! But eventually, you have to be honest with yourself. You are not normal. You are not average. You cannot be careless. You cannot be carefree. Every single action and choice you make has a consequence. And your consequences are far greater than that of a “normal person.” I began making responsible decisions. I began getting proper amounts of sleep, keeping myself hydrated, exercising daily, avoiding stress, and ALWAYS remembering to take my medication.
Epilepsy is certainly a cross to bear. It is not easy. It is easy, however, to fall into depression. I know. I’ve been there. You begin to think that there is no light at the end of the tunnel. You try different things and nothing works. You will never be controlled and you will never be able to lead a “normal life.” Every seizure is a surge to you. A surge to your body, your mind and your soul. You begin to feel sorry for yourself. What did you do to deserve epilepsy? You are a good person and make mostly good choices, why are you being punished? Why are you being hurt? I would cry every time I had a seizure. I would never want to leave my bed for that entire day. But then I realized, God only puts those through hard times that He knows can handle it and will become STRONGER by doing so. Epilepsy made me grow up so much faster than my peers. But that’s a great thing. Epilepsy made me STRONG. It made me WISE. It made me RESPONSIBLE. It made me CARING. And it made me truly value every damn day of my life. Every day is a battle, for everyone, even the “normal ones.” Our battle is just a little different. But you know what? That’s makes us epileptics great. It makes us have a story to tell. It makes us better than everyone else. You think a “normal person” could handle what we’ve been through? What we go through on a daily basis? H__L NO! We are strong. Be empowered by that. Yes, I am one of the “lucky” ones because my seizures are currently controlled. But one day, we will ALL be “lucky.” They will find a cure. It is possible. But for the mean time, let’s stand together and show people how amazing we all are. Spread the awareness. Tell your story. Don’t be embarrassed… it’s an amazing story to be told.
Please visit my facebook page: http://www.facebook.com/julianne.raymond