Call me a drip under pressure.

>> Wednesday, December 2, 2015

Christmas 2015
The last few days have been relatively quiet on the seizure front. We have, preemptively added back the .5 clonazepam at night to help with the nocturnal seizures. I hated doing it but he has gone seizure free a day or two with it offs.

We discontinued the Vyvanse. He was on it for 2 months and the last month he wasn't very happy. He was extremely quiet and not very engaged. 2 days off it and he is back to following direction, humming, kissing and falling asleep in my arms. We will see what happens as the week progresses but if we can keep him at this baseline, we will stay stable with changes until I can get him into a Smarty McSmarterson to help with the folate thing and the KBG.

I awoke this morning, after 4 hours of sleep, to Ava's feet on my throat and began to think about all that has happened the last 10 years and equate it to my current position at the Epilepsy Association of Utah and the KBG Foundation. Then I thought: how am I NOT considered an expert in the personal management of epilepsy?

( I have to throw this in there: Glenn's Dad used to love to ask people if they knew the definition of an expert. They would flounder a bit and he would say: an ex is a has-been and spurt is a drip under pressure. I always think of that when I use the term expert...I use it with respect and very carefully so as not incur his posthumous mockery.)

So I went through the numbers, as she was snoring and kicking her feet at my head, and they are pretty interesting.

7 month old Bug
Before Bug had his first seizure, my billable hourly rate was $175.00. I went from a Technology Executive to a Caregiver and Stay-at-home Mom. Somehow, that change of title devalued me and my time became everyone else's time. For what little comfort I found in it, I was able to advocate for him to get some answers, it took a little longer because I too had devalued myself and let someone else tell me what was best for him. Until I realized that NO ONE knows him, or Taylor, Ava and Aiden like I do. We wallowed a bit with no direction, trusting those we considered experts. But it was only when we told his medical team what WE wanted to see, what WE wanted to try, what tests WE wanted performed, that we found any answers.

When I attend meetings now, they are not multi-million dollar system integration meetings. I don't have a 7 figure budget to work with, and I am not being paid 6 figures. I am, usually, one of the ONLY unpaid people in the room. My motivation is true and focused: I am an Epilepsy Advocate. An unpaid but very professional person with no ego, no kingdom to build except that which raises awareness and services for people with epilepsy.

Aside from my business experience, and being a right pain in the ass at getting care for my son, what makes me an expert?

Let's use averages and tally a few things:

Bug has been seizing for over 10 years.
3,689 days to be exact.
In that time he has gone 14 weeks without seizing (not all at once, his first stretch was 60 days until his third seizure and since then he has not gone more than 3 weeks)
So let's take 98 days off that number.
3,591 days
He has had up to 20 definable seizures in one day and as little as 1. Let's be cautious and say he averages 2 clinical seizures a day.
7,182 seizures (at least)

I have personally witnessed and comforted him at least 7,182 times while he seizes. Varying times and length. Some with cognitive decline and others with a smile as soon as he was done.

7,182 seizures AT LEAST

At Disney VOD
So why, when I am in the room with someone that hasn't seen one, let alone one that day, do they tell me that I am unyielding? Why, when the EAU has been the only group to compromise to get it done are we treated like I am so difficult to work with?  Folks, I have seen more seizures in one week than most of you will see your entire life and now...because you are trying to devalue me and my experience again, I will remind you every time we meet that I am the expert in the room. If that pisses you off, that is your ego and not mine because I have been strategic in compromise to bring all parties to the table and to get a seizure plan that we can all agree upon. Even after you threw out completely, the one we brought that was approved by the Epilepsy Foundation of America and their Doctor/Educator Committee. In your arrogance, you presume to know more than EVERYONE active in the epilepsy community? That is the definition of egocentric, not me asking you provide the same support to students with epilepsy as you do students with Diabetes or Allergies. There is no ego in reminding you about how the Health Care Plan works or ADA compliance.

No, I am not getting paid to be there...and it's a good couldn't afford me.


cheryl spagler December 2, 2015 at 9:41 AM  

You go girl that's my baby sister and if you don't like they way she runs things then get out of her way. She cares about people with epilepsy and if she has to yell at our official to get help for these people and kids then so be it. I am proud to call her my sister and I would do anything for her. You go girl and keep fighting for your cause.

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What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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