Learning To Live With Epilepsy

An epilepsy disorder can sometimes develop later in life for no apparent reason.  Today I have fabulous guest blogger Melissa, you might know her as @_ShortHairDiva on twitter or from her Short Hair Diva blog ?!  She’s incredibly brave and has graciously agreed to share her personal story with us. 

Melissa has done some fantastic interviews regarding epilepsy!  One of those interviews being with non other than Greg Grunberg and another with the executive director of HealthyWomen

 Oh and did I mention she has purple hair!  Yes, you heard me right… purple!  She dyed it when she first attended the National Walk for Epilepsy in D.C. and it’s stuck ever since.  Thank you Melissa for helping me spread awareness this month.  So, without further adieu take it away Melissa…

The weeks ahead are exciting for most people because they’re already thinking about turkey, pumpkin pie and Christmas shopping. This time of year is special for me, too, but for a slightly different reason—December 2010 marks my 5-year anniversary of being diagnosed with epilepsy.

In 2005, my husband and I were on a 2-week vacation to visit relatives, but the trip took a unique twist halfway through. We went to sleep in a hotel one night, but I woke up in a hospital emergency room. My husband and my father’s aunt and uncle (who lived in the area) were standing above me, smiling. I had no idea where I was, why I was there, and why everyone was looking at me. I had my first seizure in that hotel, and my second in that emergency room.

Since that initial incident, I’ve had more MRIs and EEGs than I can remember. I even went through two separate sleep studies to see if my seizures were somehow related to sleep apnea. (They weren’t.) I saw a few different neurologists, none of whom had answers other than, “We don’t know why this happened.”

I’m actually one of the lucky ones. Some people have seizures a few times a week; others have several per day. My medication has been adjusted to a proper level and I haven’t experienced a seizure in over two years. Some people are born with epilepsy and deal with seizures throughout their entire life, but I was able to go to college and get married before all of this started. I even gave birth to the most beautiful baby girl in the world in 2008, proving that doctor wrong for telling me I shouldn’t have children.

The scary part is the big unknown. The seizures could start happening again. My current doctor says it’s highly unlikely, now that I’ve been controlled for quite a while, but I always wonder “What if?”

The costs associated with epilepsy are astronomical, too. Even with my health insurance, I pay roughly $110 per month for the one prescription that I take to control my seizures. Every January and February is a challenge because I have to meet my deductible again and the cash price of those pills is over $300 per month.

I do my best to explain the condition to people who are afraid of it and people who don’t even know what it is. I’ve gone to Washington, DC with my family to take part in the National Walk for Epilepsy two times in the past two years. I’ve even got to meet the actor Greg Grunberg in person and interview him over the phone for my blog. Greg is incredibly involved in epilepsy awareness because one of his sons lives with the condition.

A few months ago I finally got up the nerve to start driving again. I mainly drive to the grocery store because I’m still afraid, but I’m trying to get back in the swing of things. Motherhood and work keeps me pretty busy!

There are days that I think, “Why did this have to happen to me?” and there are days that I don’t even remember something’s wrong with me. Let’s hope that second attitude sticks!

3 thoughts on “Learning To Live With Epilepsy

  1. Great post Melissa, Its strange that Epilepsy can come on at any time in life! That must have been a frightening time for everyone.

    I never realised how much medication costs! (I live in the UK and we are priviledged to have the National Health Service)
    Well done for raising awareness on Epilepsy, you’ve clearly been busy with that AND being a mum at the same time – Well done.


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