Counting Pieces to Peace: Weekend Epilepsy

My Saturday revolved around a rectal syringe. (Great first line huh?) It felt dirty. Not necessarily dirty, but….. exceptionally sad. I’d tried so long to avoid it. Increasing the pills already, apparently, failing to work. Then CBD oil to no avail. And I knew I was just putting off the inevitable while having number 62, 63, 64… hearing... Continue Reading →

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“Why Not Us?”: The Epilepsy Presence

We were with three other couples, and randomly enough, one of the couples knows someone with epilepsy, another couple (us) has epilepsy, and a third couple's child is currently testing for newly emerging epilepsy… 3 out of the 4 couples somehow touched by Epilepsy. And that's not why we were together... the conversation unexpectedly ended up there.... Continue Reading →

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Here's the video we played at the rollout of Orange County's Care+Cure program at the gala. UCI did a wonderful job and for those of you that don't "know me" very well, this might help! :) SO proud and privileged to be able to represent the Epilepsy community in spreading awareness. I am surrounded by so... Continue Reading →

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Epilepsy & Relationships: Forgetting Her

He, being my husband, made the comment in conversation with a doctor. And he’d come home and relayed the conversation to me; I knew the comment wasn’t said in judgement and when he casually repeated those words, I could see an old sense of pride. Almost as if he was picturing her...

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When the Superficial Isn’t: Meds & Hair

  Hair- begins to represent less and less of you and more and more of your “invisible illness.” That was literally my first thought as I did my hair for the first time since I hacked off 6 inches… I mean, I’ve had long hair all my life- down to the middle of my back... Continue Reading →

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A Letter to My Husband: When We Aren’t Sick Anymore

Yep, I know. I know he is. He always is. My sanity, my “life coach” on days I can’t see straight for being so depressed, my normalcy, my savior along this journey... And so this post is a letter to him. To all the unsung heroes and caretakers that bear the brunt of a disorder/disease they “acquired” by association and through……….… love.

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Flutter, In Out: Epilepsy

I sat there watching it flutter ever so slightly… down, up, down, up… Brief inhale, long exhale. Quick to capture the air, slow to let it go. So soft and sweet I almost held my breath for fear the motion of his chest would stop. All would be paralyzed. I’d panic. Remember to beat, my heart.

4 Reasons I’m Thankful for Epilepsy

...there are byproducts of living with this disorder for which I'm grateful and putting them into words reminds me of something we've done on several Thanksgivings at my parents' house. We picked tree leaves and kept them in a basket by the door- at some point before dinner, each person would take one leaf and write something for which he/she was thankful, then we'd go around the dinner table and share our leaf...

Tragedy & Perspective: We RiSE

So this weekend, in fact today, Friday, October 6, my husband and I were supposed to attend The RiSE festival outside of Las Vegas… Something I had been looking forward to for months and months since I purchased our tickets. It's supposed to be a time to come together with music, but most importantly, a message...

Sunday Funday… Wins

but I always appreciate my husband’s feedback and observations of my behavior as we adjust meds and levels. I can easily tell when one increases hair loss on the head and growth on the chin (ugh lol), but he notices the behavior...

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