Not Going Down Without A Fight

Today’s Blog is my story of strength, of growth, of learning and of hope. For those of you that are new to my blog, welcome! I am so glad you picked today’s post to stop in on, as it will be one of my most important and valuable. My name is Shelia, better known to most as SheShe and I have Epilepsy. I was diagnosed almost four years ago. Epilepsy is a disease that affects the nervous system. It is usually diagnosed when a person has had at least two seizures that were not part of another medical condition. Six out of ten persons diagnosed with epilepsy will live their lives without a known cause. 1 in 26 people in the U.S will develop Epilepsy at some point in their lives.

My journey with this disease began on an early January morning as I awoke in the back of an ambulance, not knowing where I was or how I got there. I was confused and very afraid. My body was sore and I had no idea why, as I had no recollection of anything leading up to arriving in the back of that ambulance. My husband awoke early that morning to me having seizures and he thought I was having a stroke. He had no idea what was happening and was frightened and called 911. This is what led to me awaking in the back of the ambulance and realizing that was the beginning of my life forever being changed.

I saw many doctor’s and had many tests ran over the course of the next few days. All with no answers as to why or how this could have happened. With no “conclusive” evidence of anything, the neurologist at the time, told me I was under extreme stress and I needed to “chill out”. I can not make this stuff up folks, those were literally his words. I was confused and upset, but he was the doctor. Needless to say, not even a month later, I ended up wrecking my car , due to what we now know was a seizure while I was driving. Then, the final straw was a road trip headed to visit our in-laws, I starting seizing in the car. My husband had to rush me to the ER, where once again I woke up not knowing how I got there or what happened. At this point, we knew something was definitely seriously wrong and we went to see my neurologist, Dr.Phillip Blum, MD.

It was confirmed. I had Epilepsy. How could this be? I was a thirty something, that had never had any serious health issues before in my life. I worked out regularly. Lived a pretty healthy life style. We were in shock.

Turns out, anyone can get Epilepsy, at any time. It does not discriminate. It can be caused from blunt force trauma such as concussions, or you can actually be born with it. There is no true cause for Epilepsy. And, sadly, there’s more, there is no cure. Once diagnosed, you will be on meds to reduce and or help eliminate the seizures. The meds are not guaranteed and the side effects are inherently awful. The first set of meds I was put on made me lethargic. I felt depressed and out of it on a daily basis. I could barely get out of bed. After discussing the side effects, I was switched to another medication. This medication was definitely better than the previous but still had side effects. My dosages have to constantly be monitored or I get extremely sick. Any metabolic changes, weight changes, hormone changes, all effect my meds.

This may seem simple, but yes, there is yet another symptom which adds to this medication dilemma, making it all the while worse. Another symptom is insomnia. My neurologist has prescribed meds to aid in falling asleep, however they give me nightmares. My brain does not want to shut down at night. It literally thinks it’s time to run the New York marathon come bed time. This leads to lack of sleep, which is a huge seizure trigger. In addition, my metabolism never slows down so I struggle with weight loss.

Again, issue number one million and one with Epilepsy, it leads to other health issues. I have developed a heart arrhythmia since being diagnosed with Epilepsy. On a good day, my resting heart rate is 90, most days it’s between 100- 120 the whole day. If that is not exhausting, I don’t know what is. I have been prescribed meds to slow down my heart rate, however we have realized that if I take them daily, versus every other day, it slows down too much. For those of you keeping up with the med count, we now are at three different prescribed meds for three different issues all from one disease, Epilepsy.

Slurred speaking is a symptom that is both embarrassing and frustrating. The simplest of words, I stumble over and I will ask myself, why can’t I say that word?! It is extremely embarrassing and I will have to stop and literally slow down my speaking like I am learning the word for the first time. It’s always random words and always unpredictable when it happens. The most recent episode was yesterday and the word was “newest”. You would think, what is so hard about saying that, right?. I don’t know. I can’t explain it. It literally can not be explained. These are part of my daily struggles, struggles that people can’t see or don’t know about.

Memory Loss is another symptom of Epilepsy and is by far my least favorite. I would rather be nauseous every day of my life and get to keep my precious memories. This symptom saddens me to the core. I get in conversations with friends, co-workers and family and I don’t recall things. In the beginning, it angered me, to the point of resentment towards God. These were moments of my life completely wiped out from my recollection. Why would He do this to me? I know now, He had greater plans for me to be a light for others walking in the dark. I began keeping a journal. I write down thoughts, important events, daily activities that happened. Happy thoughts, sad thoughts, trips taken. . .Memories. So, if the day does come when I can’t remember them, I can read them over and over again!

I am a firm believer that everything happens in our lives for a reason. This disease has by far been the most challenging obstacle I have ever had to face. There have been times I have cursed and cried and felt like giving up. There are days when I literally can not physically function out of pure exhaustion, but I do. I go on. I have learned that each day is a gift, each memory a bonus. I am not promised today, or tomorrow, so for this moment, I am going to live it to the fullest. Enjoy all of it. Travel to new places, be kind to those who need it, give with everything I have and above all else love with all I have in me. I will advocate for my disease and for all of those who are sick with diseases of all kinds. I can not promise you easy days are ahead of you, but I can promise you that you will not have to face them alone.