In My Shoes…

IMG_6708Me:

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 from the chaos of Mommyhood and I’ve found the common ground I share with others battling Epilepsy, comforting :) Warning: None of my posts are perfect- I write them in one brief sitting and then post lol- but they aren’t meant to be perfect, they’re meant to be genuine, with faults and all… Thanks for visiting. :)

LWWE Mommyhood PicMy Epilepsy:

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!

All the best,

Megan :)

FB: http://www.facebook.com/inmegansshoes

Instagram: inmegansshoes

Twitter: @meganswalk_

Email: inmegansshoes@yahoo.com

4 thoughts on “In My Shoes…

Add yours

  1. Hi Megan –
    Just stumbled across your blog. I’m also epileptic and a mom of 2. I’ve had my seizures (petit mals) ever since I can remember. The doctors assume it’s a side effect from the bacterial meningitis I had at 6 mos old. Like you, I’ve been through probably 5 or 6 medications, none of them completely working. The only thing that does seem to help is a progesterone birth control pill that I finally convinced the doctor (not my neurologist) to let me try. So far, so good. I actually made it through a whole month seizure free! I wish you all the best :) I wrote a novel sort of based on my experience with epilepsy and how life goes on in spite of it. It’s on my blog. Like what you’re doing here. Very encouraging. :)

    Liked by 1 person

    1. Thank you so much for your support and I’d love to visit your blog and read about your experiences! Thanks for sharing and I wish you all the best with the progesterone! Happy one month seizure free- woo woo!!!! That’s a great feeling! :D

      Liked by 1 person

  2. I and MJ (scrambledmegs30) from adventureswithepilepsy.wordpress.com and would like to nominate you for the Liebster Award.

    As a new blogger and awardee myself, I have had to research more about the Liebster Award:
    • It is an award that exists only on the internet and is awarded to bloggers by bloggers.
    • The word “liebster” is German in origin and has several definitions that include dearest, sweetest, kindest, nicest, beloved, lovely, kind, pleasant, valued, cute, endearing, welcome, sweetheart and boyfriend (really?)
    • The Award follows the principles of a chain letter, that it should be passed on.
    • Bloggers are nominated and it is their choice to accept it, and continue PAYING IT FORWARD or to refuse to accept it, thereby stopping or interrupting the chain.
    • Variations have been made over time to the “rules”.
    • And lets be honest, the marketing associated with accepting this award helps promote your own and other worthy bloggers.

    The rules are simple:
    • If you accept the award you should link your acceptance post back to their blog;
    • Answer the questions posed by the nominating blogger;
    • Pay it forward and nominate 5-10 other bloggers with less than 200 followers.

    I gratefully accepted this award and am now paying it forward! The questions I pass on to you are:

    1. What is the main goal of your blog?

    2. Link to your most favourite blog post and tell why it’s your favourite.

    3. What is the one moment in your life you would re-do if you had the opportunity?

    4. If you could have any superpower, what would it be and why?

    5. If you could have a large block of free time, what would you be doing?

    6. When was the last time you were so happy you broke out in tears? And why?

    7. How has your faith had an effect on your life, relationships, and blog?

    8. Who is the person you’ve learned the most from in your life?

    9. What are 3-5 adjectives that sum up who you are?

    10. Name something on your bucket list. Why did it make it on your list?

    Like

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