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

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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

Epilepsy awareness – Purple Day!

Happy Purple Day!

Did you know that 50 million people worldwide have epilepsy? I certainly did not and I am one of them!

This means that 1/100 people are battling their own brains. When you are epileptic, it’s very hard, or at least it is for me, to think anyone else is going through exactly what you are. This is because epilepsy is such an umbrella term – it means in one form or another you have seizures.

There are so many other things that people don’t know about epilepsy, so today I am going to let you into our little secret club, and tell you some things you probably didn’t know.

  • First I am going to start by telling you that the whole put-something-in-her-mouth-she-is-seizing is a myth. So, back away with that large eraser! There is absolutely no reason to do this. In fact you are probably going to cause more harm than good. I know your intentions are not to choke the poor person you are trying to help, but this only started because someone thought you could bite off your tongue and swallow it. You can’t…it’s attached.
  • Did you know that grapefruit can mess around with some seizure and heart medications? I didn’t, until one day while eating a deliciously tart and magical grapefruit, our occupational nurse at work walked by and told me that I shouldn’t be eating that. She was actually quite shocked that I had never been told that! It was too late – I had a seizure later that day. Oy! So I avoided them…until now. Now I eat them at my desk all messy and slurpy and I don’t care who sees or hears me because I missed them, oh how I missed them!
  • This one I thought was a little ridiculous, but I remember telling someone (names will not be mentioned) I was epileptic and they recoiled and asked me if I was contagious. Now at the time I was really dumbfounded and pissed off that someone could think epilepsy is contagious. You are absolutely right ma’am! If I sneeze on you, immediately you will start to convulse.

    However, now I know it is because people simply do not know, and by asking, I am educating them so they won’t look so silly next time. This myth came from back in the day when epileptics were kept in an asylum with patients with mental disorders. They were, of course, kept separate because they were considered contagious. Silly, silly, silly!

  • You can die from epilepsy. Death from a seizure is called SUDEP (Sudden Unexpected Death in Epilepsy). There is still so much more research that needs to be done, as researchers and neurologists just don’t know why people pass away from seizures, which is why they are so scary. Death can also be caused when multiple seizures occur, or when someone is having trouble coming out of a seizure. Other than giving it a Harry Potter name – status epilepticus – again they just don’t know why. SCARY!
  • Epilepsy can not be cured, but it can be managed! Managing it means figuring out what works for you. For me, in particular, my triggers were mostly environmental: not eating right, not taking care of myself, letting stress get to me, and being over-medicated. In every epileptic, seizures and triggers are TOTALLY unique; for one person hitting their elbow might be the trigger, for another it might be a stressful situation, but either way seizures often tend to look similar.
  • The weirdest place I have ever had a seizure is in my sister Julia’s van – so very uncomfortable, more uncomfortable than normal. BUT silver lining – the chairs reclined, and she has a video screen in the back which came in handy for distracting me from the pain and nausea that comes after a seizure.
  • Seizures never get easier to handle or to go through for anyone. You may become a pro, and expect what is coming next, but things can change in a moment’s notice. And let me tell you it never gets easier to see mascara tears from those who are taking care of you, as you go into one.
  • EVERYONE is born with a seizure threshold. Yes, even you. It just depends on how high or low it is whether or not your triggers will cause a seizure.

Now that I have thoroughly scarred you let me dazzle you! Purple Day was created by Cassidy Megan, a young girl who is fighting the battle that is epilepsy. She wanted to spread the word about it. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. She is an inspiration and even has her own blog.

For those of you who are reading this and who are epileptic – I would like to reach out to you! If you have questions, or just want someone to talk to, I know I was very scared and had questions that my doctor could’t answer. Like, how I am going to deal with everything ? How will my family cope?  I want you to know that I am here to lend an ear.

Happy Purple Day everyone!

~ Jacqui

Ed. Here’s a great infographic explaining seizure first aid. The best thing to do in case of a seizure is to stay calm, stay with the person, and support them when they are done seizing. 

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Everyone remembers their first

I remember my first seizure like it was yesterday.

There are very few that stand out to me, mostly because I choose to forget them – they aren’t the warm fuzzy memories that mark a special occasion – but everyone remembers their first.

I was 17 and getting ready for prom. I had bought a gorgeous coral dress, which was a little too big, and my mom had picked myself and Andreah (Dee) up from school to get it hemmed. She took us to an apartment in a nearby city, which stood adjacent to a mall. Whose apartment it was I couldn’t tell you, but I do remember that my mom found the seamstress through someone at church. I remember that she had just had a baby. Before we went up the elevator to her floor, I remember telling my mom I was hungry, to which she promised to pick something up once we were done. I don’t think I was actually hungry, but I couldn’t put my finger on what I was feeling.

The seamstress had just finished placing the pins with precision in the fabric, making a map for herself later to follow, when she asked how I thought the dress looked… That’s when it happened…

I tasted copper, or like a penny was on the back of my tongue, everything got hot, I was falling, and I couldn’t grab anything.

Then pain, the worst pain I have ever felt in my life. I wish I could compare it to something else, but there is nothing I have ever felt before that could come close to it. The best I can do for you is a muscle spasm, but much more intense, and just as it came it was gone. My mom will tell you it was longer than what I felt – when I am having a seizure, tracking their length is the last thing on my mind.  I was tired and I wanted to do nothing more than to sleep, but the pain kept me in a state of between, as if I was awake, but still dreaming.

I felt hands, familiar hands, the hands of my mom who was now calmly telling Dee to call 911 as she was taking the dress off. I could feel the pins scratch against my skin and it was a comfort to feel something other than that pain.

“It’s okay I am here, I have you. It’s okay. Andreah you are going to need to tell them the apartment number and the floor. I am here, I have you.”

My eyes wouldn’t open…sleep, my body was telling me, just sleep.

“Andreah, grab her clothes and give them to me. You need to calm down, I have to take care of Jacqueline. She is going to be okay, just breathe and talk to the police.”

Then more hands, hands of someone I didn’t know, and my mom was giving the hands my information.

“She fainted and hit her head, she started to shake, I don’t know what happened, she was saying she was hungry, she is hypoglycemic.”

Warm air – I was outside – then a woman’s voice unfamiliar to me, “We are taking her to the hospital. You can meet us there.”

I was alone, blood was being taken from me, something was being pushed into my arm, another needle. Then dark and quiet.

I remember waking up in a wheelchair, I was in a waiting room, and Julia and Toni were there, and Ben… Oh, Ben. Andreah was sitting, staring at me. I looked up and saw Julia, I wanted to say hello, but I couldn’t find the words. Instead a classy stream of drool came out of my mouth, and tears from my eyes. I was so tired, and sore, then sleep came again.

I was in a bed being woken up by a nurse – if I had a concussion I wasn’t allowed to sleep (which is a stupid rule). Mom was still with me. Thank God – there would have been no way without her. My protector, fighting for me with nurses, and the doctors that I saw. Waiting for me through the numerous scans throughout the night. All the while holding it together.

Later, I was up and fully functional. The first one is always the hardest to get through, at least in my case. I took them like a champ after that! The doctor told me I had had a tonic-clonic or a grand mal seizure. He recommended we follow up with a neurologist as soon as possible, because they couldn’t see why I had had one. Thus started the battle that is epilepsy.

There have been so many seizures after that, and soon after my first grand mal seizure, I would come to find out I had had many more before it called complex partial seizures.

I don’t like talking about it, because I hate the look of sympathy in people’s eyes and I in no way have it worse than many other people with epilepsy. I have never had to have major surgery in order to improve my way of life. Yes, I have been yo-yo’d from medication to medication, but I found what works and now I am four months strong seizure-free with no medication.

I have the utmost empathy for those who live and fight epilepsy every day, constantly looking for a cure, medication, therapy, or treatment that will help them cope with their seizures. The brain is a tricky mistress and she is constantly changing and challenging us. I also know that a lot of us couldn’t do it without our amazing support systems, taking us to appointments, watching helplessly as we go through yet another one.

I am so lucky to have someone in every corner of my life who has been there for me during an “episode”. I have been babysat by my best friends when I was changing medication and couldn’t be alone, and held close by Cody while I was having yet another seizure in the middle of the night. My mom, who has driven from Waterloo in the middle of the night because I was having too many or getting calls midday from work, letting her know I had another one and she needs to come get me. Toni and Julia, who babysat me when Cody was away, especially Julia who has dropped everything to come pick me up from work so I can go home and sleep and she can watch me. Dee, who I first tortured, and who ever since has called me whenever I have one just to make sure I am okay.

And oh my goodness, my supervisors Terri and Andrea at work, who literally put in place a procedure to help me get through a seizure (some of my work family still have the procedure pinned to their desk areas, emergency numbers and all), especially Andrea who was designated my seizure buddy at work, who watched as I worked through one, and waited time and time again for me to wake up.  All the many mama bears (you know who you are) who waited until the bathroom was no longer “out of service” to know I was okay.

You all mean so much to me! There are no words…except these I have to share:

Before you can see the light, you have to deal with the darkness. - Dan Millman

Thanks for being my light. ❤

~ Jacqui

Ed. – For more information or to find out how to support epilepsy research, visit www.epilepsy.ca. Show your support for epilepsy research and people who live with epilepsy by wearing a purple ribbon on March 26, Purple DayWe LOVE you, Jacqui!

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