What The Doctors Didn’t Tell Me The Day Of My Diagnosis

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If I could impart a few words of wisdom and encouragement to my fellow epilepsy journeyers: Don’t ever give up!

The day of my diagnosis, the month of December, there was much that the doctors and neurologists did not tell me. Much that they did not prepare me for as I took step onto the road of the journey. They informed me of everything I most likely would no longer be able to do. They determined and identified struggles and challenges.

Appointment after appointment, I listened intently about what I wouldn’t be able to do, should most likely avoid, and what I likely may never be able to do as a result of having epilepsy. Year after year, medication after medication, appointment after appointment, follow-up after follow-up, time and time again it was a repeating cycle.

I wasn’t diagnosed with epilepsy at birth or as a young girl. 6 years ago, when I was 22 years old, epilepsy was a foreign word to me. A word I had not heard of all too often. When the neurologist asked me if anyone else in my family had epilepsy, astounded I replied “No.” It caused me to sit back and think long and hard about my family health history. About the way I lived my life. About a whole list of things.

I knew something just didn’t seem right and I of course trusted my gut instinct on this one. I could feel a check in my spirit leading me towards a certain direction. When I was 16 years old, having endured my very first grand mal seizure, it was discovered that within my brain, is a Cavernous Angioma. I was placed on medication for a period of time and later declared seizure free. In that period of time, something miraculous and unexplainable happened over the years–I encountered zero seizures! Only one. I was free to go about my way as a young teenage girl, growing up and living life without a care in the world. I had completely forgotten about the single seizure I’d had at the age of 16. Until their return at age 22.

It was a rigorous balancing act of finding the right medication combination and dosage to combat the seizures. My husband and I were also continuing to see a neurologist as well because there was more going on than just seizures. Side effects. Who doesn’t love side effects of the medications that are meant to combat the seizures?

The one thing I was not told was that I’d be a brave, strong, willful, smart, outgoing, kind, caring, helpful, loving and hopeful individual who would continue to fight each and every day on a journey living with this condition and using my experiences as a way to help others in their journey too!

If there is one thing I could share with those who have been just diagnosed it would be: Whatever you do, don’t give up! It is a challenge yes, but you will overcome! Please do not give up! Keep in mind, not a one of us can foresee what lies ahead. There are times where you just need to hold on and take a look and let the winds of life guide us to where we need to be.

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