An ode to Jacqui

WE’RE BAAAAAAAAAAAACK!

It may not be Tuesday, but Julia and I decided to pull a switch-a-roo so I could have the honour of writing a post to mark this day of our very own Jacqui’s birth.

JQ, my baby duck, happiest of birthdays to you. I hope you have the best day possible today, regardless of responsibility and have to’s required of you today.

I’ve got to say, getting to be your big sister has been pretty kick ass so far, as I am sure it will continue to be. Getting to watch you grow over these past 26 years has been a wild, rewarding ride.

I mean, I got to know you from this point:

Her pants are SO inflated with fart.

Her pants are SO inflated with fart.

And watch you grow into this:

BAM! (she's still 12!)

BAM! (she’s still 12!) [Photo credit: Photography by Heather ]

I can’t believe you’re 26 though. I mean, it really does seem like yesterday that we were much shorter, standing in our country home, getting into whatever shenanigan we could to entertain ourselves…

I love that this picture exists

I love that this picture exists

And now we’re all grown up, trying to navigate all of life’s crazy adventures as they come…I hope it goes without saying, but I’m really grateful I’ve got you by my side through all of them.

I have loved watching you grow into your own person and become even more ‘you’ these past few years. You’ve inspired the hell out of me with your strength in your battle with epilepsy and conquering a shit ton of obstacles to celebrate two years seizure free this week. (Seriously, you KICK ASS)

Last year's one year anniversary tattoo

Last year’s one year anniversary tattoo

I admire your heart, your incredible wit and humor – I seriously still vote ‘stand up comedian’ needs to be added to your resume – and your need for peace making. You’re brave, smart and gorgeous from your heart out.

I hope 26 is incredible for you in every way – with more laughter, love and magic than you can hold. I know you’re already off to the best possible start.

Sisters ♥

Sisters ♥

HAPPY BIRTHDAY, dear Jacqui! We LOVE you!

~ Toni

For Cassidy Megan

It has been a year a half since my last seizure – and I am still scared shitless.

Every time that someone tells me that I am out of the woods, after all it has been a year and a half there is nothing to worry about, I secretly want to kick them and yell “DON’T JINX IT!” or “HOW DO YOU KNOW? DO YOU HAVE A CRYSTAL BALL?” and if they do have a crystal ball, why the hell haven’t I used it before!? I am so scared that it will happen again. Every time that I get sick with a flu or cold, the first sign of the sniffles, I panic. When my heart goes wonky because of stress, I immediately call my mom to take me to the emergency room. Every time I decide to have a libation after a rough day at work, I sip it gingerly in hopes of not triggering the sleeping monster. Because after all, that is what it is, a sleeping monster. A monster who lies waiting for me to be living my life, and then BAM!

This past episode of Grey’s Anatomy hurt my heart. A woman got into a car accident (well, the car drove through their house and hit her and her husband). She was pregnant and talking and fine and then all of a sudden she had a seizure and she was gone. She was gone and they delivered the baby. She was gone and the baby lived on while the father had some intense surgery. I fell apart while Cody slept soundly beside me. I messaged Julia who is my Grey’s Buddy…and she talked me off the ledge. It’s not just Grey’s though – every time that a character has a seizure on any TV show I hold my breath and then burst into tears because IT’S SCARY! My mind starts racing! Is this what my family watched? Did they hold their breath?

I am scared we won’t be able to have babies. Like, really scared. I am scared I won’t be able to, or that I will hurt them. A woman once thought it was a good idea to tell me that a friend of hers had a bath with her two year old, and while they were bathing she had a seizure and drowned her baby. I can’t get that out of my head. My mind keeps racing. What if I do that? What if some HORRIBLE accident happened and then I would lose my baby and Cody and my family and it just snow balls. Seriously – my brain, if it’s not seizing, it’s freaking out thinking of all the horrible things.

I have a coping mechanism – I make fun of my seizures to make it easier for me. I laugh about it, and joke about it and make it seem like it’s okay, but it’s scary. I will talk about them with anyone. I will answer anyone’s questions. I am not scared to do that. I am scared that it will happen again.

I am scared. 

Today is Purple Day, which is celebrated around the world. It is a day to raise awareness about epilepsy. My co-workers at my office are going to be holding a fundraiser tomorrow for it which is AWESOME! There are no other words for it other than AWESOME!  Purple Day was created by Cassidy Megan, a young Canadian girl, in 2008. She was motivated by her own struggles with complex partial seizures. She wanted people to know more about it and dispel myths. Purple Day didn’t become international until 2009.

I am going to be wearing purple, and putting my own selfish fears aside to support those who are going through worse than me. For those who suffer every day, multiple times a day. For you, I hope you find the treatment that works, find your trigger and live a life free of seizures! I wear purple for you, and know that you are always in my thoughts and prayers!

Purple Day

Purple Day 2014

~ Jacqui

The one year feat!

In the world of epilepsy they calendar milestones in years, although to an epileptic a day could feel like a year. For instance, you lose your license when you have uncontrolled seizures of any kind, something about automobiles and seizures not mixing? I am not sure, but the MTO in Ontario states that if a person has been seizure-free for a year then they may reapply for their license.

 To this epileptic this year was AMAZING!!!!!!!!!!!!  I am proud to announce I am one year seizure FREEEEE. 

I thought, what better time to look back on where I was a year ago?  Most people were starting school again and I was facing starting a new medication and talking about whether surgery was in order to further find out WHY I was not responding to any medication. There was a theory that was not very popular with my neurologist – I could be possibly be taking too much medication. It was a scary thought, to be over medicated. How could that even be? Modern medicine teaches doctors to treat symptoms, but what if it is a vicious cycle of treating a symptom that is being caused from a medication with more medication?

So I made a decision. I was going to get healthy on my own, sorry Doc!

I was going cold turkey, people. I was…what the fuck was I doing? I was being bold? I was being brave? I did it for me! For future babies!  For Cody!  For my family. I did it so when I called in sick to work, it would be simple – I was just sick, get better! Rather than “Are you home alone? Do you need me to come over? When will Cody be there? Does your mom know?” Hey, I am not complaining – I put this in place. I told my workplace what I needed medically and they were all in. I guess I am just that darn special! I did it for so many reasons and I kicked this year’s ass.

How? Well, I said no. I said no to a lot of things. I said no to when I knew it was too much to handle, I said no to trivial small things. I stopped sweating the small stuff, and it really is all small stuff. I said yes to me. I said yes to going to bed early if I was tired, I said yes to the cues my body was giving me. I said yes to spending more time with people who supported me instead of tearing me down. Who were looking out for my well-being as well as their own. I have an AMAZING support system all around me.

I started to watch what chemicals I was putting into my body in terms of processed foods. I said yes to more whole foods and tried to get rid of as much processed crap.

Let me tell you this journey was not easy. I am a people pleasing person, I like to do what you want me to do, I like being asked to do things and being leaned on. But when my own health became backseat, I had to kick everyone out of the bus.

I DO NOT RECOMMEND DOING THIS without the support of your neurologist. If you are reading this and think that this may be your case, then talk to your doctor first – do not throw out your medication because NO two epileptics are the same.

I commemorated my one year feat with a permanent reminder that I came out of the darkness – but I am not out of the woods yet. I am still very much an epileptic, and I can’t live life thinking I am invincible. Every decision I make, everywhere I go, everything I do, I am epileptic. I have epilepsy. BUT IT DOES NOT HAVE ME!

~ Jacqui

If you would like more information in regards to my journey, leave us a comment and I will be happy to email you.

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Doomsday preparer

I have marked a little milestone in my life as someone who has epilepsy – I have been seizure-free for 10 months now. TEN whole frickin’ months!

I am so happy and so scared all at the same time. Let me explain:

When you are diagnosed with anything, be it epilepsy or cancer, there is always a fear of the unknown. You can google, webMD and talk to as many doctors as you can until you are blue in the face, but there are no cookie-cutter symptoms.

I was lucky enough for my seizures that most of the time I could feel them coming, and since that feeling has left there is a pit in the bottom of my stomach looking, and waiting for it to come back.

Bad day at work? Where is that feeling?!

Out ’til the break of dawn with friends? Where is that feeling?

Stressed about family/friends/life? Where is that feeling?!

I am looking for it, I am waiting for it. A part of me wants it to come back just to get it over with! Like I am supposed to have one last hurrah!

When we go away, I still pack my emergency case: a heating pad for the aches that ensue afterwards, a security blanket/pillow for me to curl into, the medication that I worked so hard to get off of…just in case.

I have to be prepared, because the moment I am not is the moment it will come back. The moment that I taste that penny and my heart starts to race.

I count down the days and share my leaps with Cody, but I have never really uttered a word about how truly afraid I am that tomorrow will be the day that I have to restart the clock. It happens all the time.

It could be worse, I could still be having them as much and as often as I used to and I could still be medicated.

The future is a scary thing, especially when you are a doomsday preparer!

For now, I will still mark off the days in my calendar and plan my big 1-year celebration. But in the back of my head, I am still waiting for that penny to drop.

~ Jacqui