I am a 37 yr old Mama of one married to a very supportive husband whose encouragement has propelled me to share my humble journey. Through this, I discovered a need and a want to write; I love the “break” it gives me and I’ve found the common ground I share with others battling Epilepsy, comforting :) Thanks for visiting. :)
People can develop Epilepsy at any age, but I, myself, was diagnosed with Epilepsy in my first year of college. I remember waking up one morning in my cramped little dorm room at UCLA soaked in my own urine, and I had a throbbing headache, I was beyond exhausted, my limbs felt like lead, and I couldn’t speak well as though I had something wedged in my mouth. Feeling dizzy, I made my way over to the mirror and opened my mouth- my tongue was grossly swollen, black and blue, and there were dead, white chunks hanging from it… I panicked and started to cry. What was wrong with me? I’d always been in perfect health- my Mom’s an amazing cook so I ate healthy, and I was extremely athletic. Crazy, but I knew- I’d had my first seizure. I was terrified.
I won’t bore you with the daily details from 1999 ‘til now, yet I will say a few things. Over the next year, I continued to have seizures while trying numerous drug combinations. Tegretol gave me a rash, Depakote made me lose huge clumps of hair, Dilantin gave me Steven Johnson’s syndrome (from which I lost weight b/c I couldn’t chew or my gums would bleed), Neurontin, etc. I had tests. I wasn’t allowed to drive anymore. The drugs and the seizures made me feel as though I had no control over my own functioning… I was self-conscious and scared. I’ve fallen, sliced my nose and gotten a black eye (the dresser obviously won that battle). I’ve gashed my arm on a shower door as I fell into a seizure while washing, choking on water, and had to crawl on all fours out of the tub. I’ve watched myself have one in front of a mirror, etc. And I’m a fortunate one.
Fast forward to recent; I gave birth to a beautiful baby boy in April 2013 and pregnancy was one of the most incredible times in my life. Yet, it was also one of the scariest. After not having a seizure in several years, I began having them again due to the fluctuation of hormone in my body. And again I was back to that uncertainty of my first year- Why is this happening now? How come my pills aren’t working? Am I going to hurt my baby? And my greatest fear- if there’s something wrong with him, it’s my fault…
I decided then that I needed to talk about it.
I started first with a Facebook page dedicated to epilepsy awareness through my experiences, and raising money for my participation in The Walk to End Epilepsy put on by The Epilepsy Foundation of Greater Los Angeles. I raised $5,000.00 in the first 2 weeks alone… It was my first time asking people for money, which I find uncomfortable, but my history with Epilepsy trumped my hesitation. It was an incredible experience. So, I kept my FB page and eventually established a blog just so I could document my writings all in one place for my own safe-keeping. With encouragement from others, I’ve recently started to share the blog and post more of my experiences. Although my Facebook page and blog site are both humble in the number of “followers,” the numerous interactions with others just like myself, who have always been hesitant to share their own stories, are invaluable, and I find my epilepsy has added a whole new sense of purpose for me… :) I’ve helped expand the Epilepsy Foundation of Greater LA’s Care+Cure here to Orange County and I’m proud to say we are the first roll out of what will now be the Care+Cure Institute nationally. What a privilege. We raised $300,000 to help fund an Epilepsy neurosurgery fellowship shared between CHOC (Children’s Hospital OC) and UCI Medical. (Both Level 4 institutions and in need of Epilepsy specific funding.) And I look forward to heading the expansion and sustainability of this amazing program.
Thank you for allowing me to share my story and feel free to visit my pages and/or contact me!
Me in video:
All the best,