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 →
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 →
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 →
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...
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 →
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.
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...
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...
A new Instagram epilepsy friend recently tagged me in one of her posts and looking at these pictures, now I'm sitting here – in the parking lot of my son's karate class – with tears in my eyes... Yes, they are tears of sadness as I know the journey she's been on as a wife,... Continue Reading →
(written 3 years ago but certain events reminded me of it today... During hard times I think its important to remember, there's nothing more binding than humanity and our compassion for one another's struggles...) We had dinner the other night with a friend whose wife has had 7 miscarriages; they can get pregnant but it just... Continue Reading →