In Megan's Shoes: Epilepsy in Real Life

In Megan's Shoes: Epilepsy in Real Life My story as a wife, mom and person with Epilepsy. An epilepsy advocate and sometimes writer ;)
www.inmegansshoes.com What was wrong with me? I was terrified.

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 and I had a throbbing headache, I was 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 pieces hanging from it… I panicked and started to cry. I’d always been in perfect health- my Mom’s an amazing cook so I ate healthy, and I was extremely athletic. Somehow, I knew- I’d had my first seizure. I won’t bore you with the daily details from 1999 ‘til now, yet I will say a few more things (you know me- I never shut up ;)). 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, 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 sliced my arm on a shower door and had to crawl on all fours out of the shower. I’ve watched myself have one in front of a mirror, etc. And I’m a fortunate one. There are people who have seizures daily. Sometimes 50 to 100 times in a day… How does one live any sort of life in that condition??? I can’t imagine. To wrap up my story, I’ll say this. Most of you know, I gave birth to a beautiful baby boy in April 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.

This made my day!!!!! 💜💜💜
09/03/2019

This made my day!!!!! 💜💜💜

Katie Cooke is a competitive runner. With the help of her neurologist, who doubles as her running partner, Cooke is never steered off course.

💯 Value each and every accomplishment based only on you… Celebrate your strength!!! 💜
07/09/2019

💯 Value each and every accomplishment based only on you… Celebrate your strength!!! 💜

My visits here have way too infrequent lately… Been needing a little epilepsy inspiration! 😬 Time to get my mojo back… l...
06/26/2019

My visits here have way too infrequent lately… Been needing a little epilepsy inspiration! 😬 Time to get my mojo back… lol What inspires you?!?!? 😁💜😁

Honestly- been lacking motivation in the Epilepsy advocacy dept... 🙈 even tho I’ve been lucky enough to be kept in the l...
06/09/2019

Honestly- been lacking motivation in the Epilepsy advocacy dept... 🙈 even tho I’ve been lucky enough to be kept in the loop from doctors and other advocates alike. 🙌 BUT TODAY, my bestie in Colorado surprised me and did the Walk for Epilepsy and sent me pics of her and the fam wearing their capes... She was there when it all started for me in college and despite the distance now – I’m in CA – she’s been there for me every single step of the way. Kat you bring tears to my eyes; you INSPIRE ME to “get back in it,” remember I can call anytime of the day/night and rely on your calm. I love you, I love you, I love you... 💗 and I love that you’re such a good mama, teaching your kids compassion for those that struggle with something else. I couldn’t be luckier! 🙈😭😘😘😘
(Sorry for the long post guys.) 💜💜💜

💜HONESTY💜 What you have to have with your doc! I’ve always been straight up about my lifestyle choices and habits despit...
05/10/2019

💜HONESTY💜 What you have to have with your doc! I’ve always been straight up about my lifestyle choices and habits despite how he may respond b/c I know that’s best for my health decisions. (Even though he tends to shake his head at the things that I confess or come out of my mouth, 🙈 I shoot it straight.) Which is scary, but you have to. ☺️ I’m so fortunate to have such a close relationship with my doctor as a result of being an advocate and a patient... to dinner with a few of my fave docs a couple weeks ago...

Exactly one year ago today, we took this picture while practicing our letters and numbers in chalk outside… my message t...
05/07/2019

Exactly one year ago today, we took this picture while practicing our letters and numbers in chalk outside… my message to my little man... ☺️ When I look at this, I think of the almost 65 million people diagnosed with epilepsy worldwide… And how that number is doubled, tripled, or even more by the fact that epilepsy is a family disease... such a far-reaching affect. Thank God I have the support system that I do! 💜💜💜

Trying to stay incognito while waiting for my 7am CT Scan 😉 So random, but I fell last week (unrelated to a seizure) and...
04/30/2019

Trying to stay incognito while waiting for my 7am CT Scan 😉 So random, but I fell last week (unrelated to a seizure) and got a concussion. Still a little dizzy with headache... told my Doc I have a feeling the results are just going to once again confirm I’m cray cray 🙈😉 lol (Post includes CT Scan description)

I know this account is dedicated to epilepsy, so you’re probably wondering why you’re staring at my gnarly toes in a pai...
04/02/2019

I know this account is dedicated to epilepsy, so you’re probably wondering why you’re staring at my gnarly toes in a pair of shoes… ☺️ But, my account is “In Megan’s Shoes” and I named it that for a reason. Both my addiction to shoes, and the idea of walking in the life of somebody who has epilepsy.
Why are shoes important to me? – because honestly, they always make me feel good. Doesn’t matter what my day’s like, if I can slip into a pair of shoes that boost my confidence, it makes a world of difference... Sounds stupid, but it doesn’t matter if I’ve had clusters of seizures, when I come out of a seizure hangover, a simple pair reminds me I’m human, strong and I can walk tall conquering the sh*t out of anything... 💝 Thanks Mama for my latest boost of confidence 😘
Whatever your source, find strength and walk tall!!! 🙌💜🙌 🙈😬

Going to conquer the week like... 💜💪🏼💜 Goal: zero seizures! ☺️
04/01/2019

Going to conquer the week like... 💜💪🏼💜 Goal: zero seizures! ☺️

Got asked where I found my purple multi-colored bracelets at the pool today... by somebody that has Epilepsy!!! (Whaaaaa...
03/16/2019

Got asked where I found my purple multi-colored bracelets at the pool today... by somebody that has Epilepsy!!! (Whaaaaaaat???) My amazing friend Lauren got me these for my 39th bday last week. LOVE her aaaaand her thoughtfulness! 💜💜💜 ’reeverywhere lol

Love these amazing Docs! (missing one in this pic ☺️) I’ve never had so much intelligence packed into my little house! L...
03/15/2019

Love these amazing Docs! (missing one in this pic ☺️) I’ve never had so much intelligence packed into my little house! Lol I’m so lucky to have the relationships I do and am SO grateful for each of these Epileptologists that are driven to and provide a better quality of life for their patients! 💜 (plus, they’re a ton of fun 😜)

And thank you chef Antony for an amazing dinner!! 🙌

03/14/2019

After much thought, I decided to leave the Epilepsy Foundation; However, I will ALWAYS be an advocate and I can’t wait to see what life brings me next!!! ☺️
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850 Health Sciences Rd # C240
Irvine, CA
92602

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