Do You Deja Vu?

365 DAYS OF PURPLE
OR
DO YOU "DE JA VU"?

(EPILEPSY AWARENESS)

.... I am wearing purple to get people to realize that multiple "de ja vu" episodes could mean simple partial seizures.

Day 1 Nov 23 2013 - It Begins
I had been wearing purple every day of November this year. Why? Purple is the color for epilepsy awareness. Again, why? Because my autistic son has epilepsy.

He had his first big seizure (tonic clonic / grand mal) in April 2011. By the time 2012 crashed into 2013, he had developed four different kinds of seizures. May 2013 he had two brain surgeries to get rid of the seizures.

Do you De Ja Vu? He did. Not just every once in a while like most people, but he had de ja vu episodes constantly, every day. Sometimes several times a day. I kept asking doctors about it, but was told to just ignore it. No big deal. Ignore them, they said.

The doctors were wrong. When people have more than the average de ja vu feelings, it CAN be simple partial seizures. The neuro pathways aren't firing correctly.

We finally got help.  Other people might not be so lucky.

My goal is to wear purple ... somewhere on my body ... for 365 days. Starting Nov 23. That was yesterday. I won't be taking pictures every day, but will do it as much as possible.

If you see me in Parker, Elizabeth, at the Aurora Children's Hospital, or out and around Denver (Colorado), stop me and say hi.

Yesterday, I had a jam and MRE sale at the Parker Wal-Mart. Colored my hair purple (yuck ... itchy) and even dressed the entire table in purple to match me! Then later, Hubby took a pic of me in the purple outfit.

 

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Day 2 - Purple at home

Purple:

-Two sets of earrings in each earlobe

-Purplish house slippers

-Purple top

After baking, cooking, canning and working hard non-stop for a week, I took a bit of a break today. Slept in (7?). Babied my new chicks. Played with the dog and the kid. Milked the goat. Made cheese. Sold some jam. Planned the orchard.

Just a quiet day.

 

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Day 3 Nov 25 - Quiet Day

Busy at home... farm chores, cranberry sauce-making, taking care of Weslee and much more.

But... since we didn't go anywhere, the only purple was:

-earrings

-socks

-fingernail polish!

 

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Day 4 Nov 26 2013 - Quick Trip

Needed milk for Weslee's special drink and his cereal, so I grabbed my purple socks, threw on my purple shirt, and pinned a shiny purple bow in my hair.

One of these days, someone will ask why I wear so much purple.

Do you "de ja vu"? If you have lots, get it checked out with an epileptologist! NOW!

 

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Day 44 Jan 6 2014 - Catch Up!

Can't believe how much time has passed since I wrote my purple piece! Even though I haven't been writing, I have been very faithfully wearing purple daily. Christmas party on Dec 28 found me head to toe in black (even my cane!) except for my bright purple tights! LOVE IT!

 

Then I got on an organizing kick and went through my closet. Everything not purple or didn't go with purple went into the bottom, folded and stacked neatly. Everything purple is front and center! No mistaking ... I **am** doing 365 days of wearing purple for epilepsy.

 

Are you?

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Day 125 March 5 2014 - Another Catch-Up!
Weslee was in the hospital in February for 3 days. We were trying to see if some of his staring spells and de ja vu were producing verifiable seizures. They weren't! So, there are two possibilities:

1. The May 2013 brain surgeries cured him of epilepsy so yahoo!
or
2. The three medicines he is on is masking the seizures.Or controlling them.

In order to find out which, we have started SLOWLY reducing his meds. First up, ONFI. Ick. So glad.

Meanwhile, yes, I am still wearing purple every day. Even if it is only my purple fingernails, I have purple on me.

I had a lump removed from my mouth last week. The tech who was assisting the doctor during the biopsy commented about my purple and green fingernails, so again I explained that I am doing 365 days of purple for epilepsy awareness. She responded that she had a family member with epilepsy.

See? It's working!
 

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Day 231, June 19 2014 - Might Extend
Out of these 231 days that I have been wearing non-stop purple, only 3-4 people have asked why I wear so much purple! Unbelievable! Is purple such a common color?

So, I am thinking of not only extending this project from one year to two, but also, when (IF?!) people ask, I will mention that epilepsy CAN BE FATAL.

How's that?

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Day ???, July 9 2019
I've lost track of the days - - in a row - - that I've worn purple for epilepsy awareness.  Even through surgeries for breast cancer and knee replacements, when I had to strip bare for the operations, I made sure to write on my forearm, in purple, "do you deja vu?" My glasses frames are purple. All of my clothes are purple or work with purple pieces. I have purple handbags and scarves. Purple epilepsy (and pink breast cancer) magnets on my car.

I get asked on a regular basis "why do you wear so much purple", especially if I have it on from head to toe and accessories to match.  Then I explain.

My son and I moved to Louisville, KY June 2018r. On May 1 of this year, Weslee had another brain surgery but this one went really really badly. For more info, see my book "Epilepsy - One Mother's Perspective".