Purple Day Awareness & Updates

Well it’s been a while since my last post.  So much began happening so quickly I found myself quite busy in the days leading up to Purple Day.

First, I applied and was accepted as an Ambassador of Purple at purpleday.org.  After becoming an ambassador I then sent official requests for purple day proclamations from our Governor and Mayor.

I also asked our pastor if I could speak about Purple Day & Epilepsy in church on 25 March (the day before Purple Day) and he said I could.  I decided to make awareness ribbons for members of the congregation.  I began crocheting small purple Irish roses and attaching them to lavender ribbons with gold pin backs.

Next, I got to thinking how many school districts here transport special needs kids.  Many (probably without knowing) transport children with epilepsy.  Knowing that the (NSTA) Nebraska School Transportation Association are always looking for good speakers for conferences I decided to contact the NSTA executive committee and make the suggestion to have a speaker from the epilepsy foundation come speak at a conference.  The executive committee liked the idea and gave me the green light to contact the epilepsy association.

I made a basic inquiry on behalf of the NSTA and met Laura.  She is our local Epilepsy Education Coordinator.  As we emailed back and forth I told her part of the reason I got the initial idea was because of my own tonic-clonic seizures.  We began emailing and then spoke on the phone.  A few days later she met us here at the house.  She brought a bunch of information for me and we spoke for quite a while.  It was wonderful.

During her visit with us I gave her two of my epilepsy awareness ribbons.  One for her and one for her daughter.  She really liked them.  She told me she was looking for awareness ribbons for one of the Lincoln support groups so I asked if she’d like me to make some for them?  She said they’d need about 100. 

After she left we went out and I got more supplies.  I began that day crocheting more roses and putting together more ribbons.  I managed to finish the pins and she picked them up on the 18th.  That’s when I had to begin making the ribbons for church.  I also had to put together some power point slides about Purple Day and bulletin inserts about epilepsy for church.

The I got an unexpected phone call.  I didn’t recognize the phone number but decided to answer it.  It was the Governor’s office calling me!  I was told the Governor had approved the Purple Day proclamation, but it had been received too late for me to be invited to the March signing ceremony.  Instead they invited me to the April signing ceremony to receive it from the Governor.  I couldn’t believe it!  April 11, just two days prior to my birthday, I will be going to Lincoln to meet the Governor and receive the Purple Day proclamation!

During all of this I noticed on facebook that a local reporter was asking for news story ideas.  I messaged her and gave her the information on Purple Day including the website.  I told her maybe they could contact the epilepsy foundation.  To my surprise she messaged me back thanking me and said she’d get it on the schedule.

On Wednesday 24 March I received an email from the Mayor’s Office telling me the Purple Day proclamation was accepted and being signed by the Mayor!  They mailed it right away and I had it in time (it arrived Friday) so that I could display it on Sunday at church!

Saturday 24 March was a bit of a crazy day.  It was my mother-in-laws birthday and she had requested I make her birthday cake.  I spent the morning getting her cake ready while also trying to finish up awareness ribbons and my speech.  I got to bed very late that night after finally finishing everything I needed for Sunday morning.

Sunday 25 March was “my” Purple Day.  When I got up, I put purple highlights in my hair and dressed in purple.  My speech went well and I got some positive feedback.  I saw many members of the congregation wearing their awareness ribbons after church.  By the time we got home I was totally exhausted, but excited that everything seemed to go well.

26 March, Purple Day… I really didn’t have plans other than resting.  I awoke to find David home.  He told me he didn’t feel too well when he got up and decided to take the day off.  I got busy taking part in something called “seize the internet,” sharing epilepsy facts on facebook and twitter.  Then I got the phone call!

It was mid morning when Laura called me.  She said she’d just received a phone call from WOWT news asking her if she would do a live on-air interview on the 4pm newscast.  She called me to tell me and also said she had a suspicion I might have had something to do with it.  I laughed and confessed to her that I had contacted a reporter a few weeks prior.  That’s when Laura asked me to come with her.  I was stunned.  I said I would and she called WOWT back to see if it would be ok to bring me along.  She called back a few minutes later telling me they said to bring me too.  I looked like a deer in the headlights at that point and my hubby was laughing at me!  ( I still had purple in my hair!)

She picked me up at 3:15 as we had to be at the station by 3:30 to get ready.  It was an interesting experience being in the studio.  It looks so much bigger to me on the tv than it does when you’re actually in it.  Right after the interview I thought to myself, “that was a train wreck!” because I had been prepared to discuss Purple Day, how it began, who started it etc., but instead was asked questions about my life with epilepsy.  It caught me a bit off guard and I felt like I’d been very awkward during the interview.

When I got home, David had recorded it on the dvr and I was able to watch it.  It wasn’t nearly as bad as I thought it had been in my head thankfully.  Yet it still wasn’t as good as I’d hoped.  Still, all in all we did get out information on epilepsy which was important.

The last two days I’ve been basically recovering from all the excitement.  I am still feeling quite exhausted physically (which is probably also caused a bit by being nervous about my speech and about being interviewed). 

All in all I am proud of what I did manage to get accomplished in a short amount of time for Purple Day.  I truly feel God’s hand at work in all of this.  I have no doubts He called me to speak out and then opened all the doors!

What’s next?  Well for me I have an appointment with my neurologist on Friday.  We had to reschedule because my hubby had a meeting he couldn’t miss on the 14th. 

Cat

A Good Side Effect!

If you have to have a side effect from a medication you might as well have a good one!  I am happy to report I have experienced just that!

For the first time in 4 years I have been migraine free for one month!!

My neurologist said that migraine prevention or reduction could be a possible side effect of the Levetiracetam.  I kept my fingers crossed and hoped that might be the case for me.  Even though it’s only one month, for me that is a lot.  I’ve had monthly migraines for the past 4 years without fail. 

My migraines are classified as menstrual migraines, meaning I get them anywhere from 2 days prior to the onset of my period until two days after it begins (a four day window).   I can always tell when I’m about to get one too.  I get a stiff sore neck, nausea, and the worst… my sense of taste goes wacky on me and nothing tastes like it should. 

My three tonic clonic seizures have all occurred this past year when I developed the migraine at night while sleeping.  I’ve suspected that the nocturnal migraines are what trigger the seizures, now I’m not so sure.  Although I do still feel there’s some sort of connection, I have learned that the changes in my sense of taste could in reality be a simple partial seizure.  The nausea could be an aura of my nocturnal migraine, or it could be an aura to the oncoming tonic clonic.  It leaves me scratching my head (and I think my neurologist too) .   They do say that migraines & seizures are “cousins.” 

Women who experience migraines with auras are at a higher risk of developing seizures/epilepsy.  Not all people with epilepsy have migraines and not all people with migraines have seizures, but there is definitely an overlapping.

I also have to report that I am finally feeling like myself again.  I had quite a few days there where I went from apathetic to very depressed.  I was close to calling my neurologist.  I gave it a set number of days and if it didn’t get better I was going to call.  Then finally it did get better.  I am wondering if the side effects of the Levetiracetam are amplified by hormonal changes?  That’s a question I will be asking my neurologist on the 14th of March.

Speaking of which, I am not exactly happy with my neuro or his office at this point in time.  We realized after our last visit (David, my hubby always comes with me) that the neuro didn’t give us an exact answer.  So last Thursday I called his office and asked a direct question.  I was told by his nurse she would find out and call me back if not later that afternoon, then on Friday.  Friday came and went with no call.  I still haven’t received a call back and it’s Wednesday… nearly a week later.  That in itself is frustrating.  I’ll probably call Thursday morning since I’d really like to have an answer before I forget that I ever called.

I’ve been busy lately, crocheting like crazy.  I’m making lavender awareness ribbons with small crocheted purple Irish roses on them for Global Purple Day 26 March.  Lavender is the international color for epilepsy awareness, and purple is the color chosen by Cassidy Megan, the founder of Global Purple Day.

Well it’s late and despite my Levetiracetam insomnia I need to try to get some sleep.

Hugs to all,
Cat