Seizure free for one year!!!

Memories of the past three years float around in my mind. As I sort through the trying and sunny times, it’s almost impossible to put all my feelings into words.

There is heartache for the loved ones I’ve lost along the way. There is fright and frustration for the storms I’ve had to face.

There is embarrassment for all the silly things I’ve managed to do. There is love and gratitude for the kindness and encouragement my family and friends have given me.

There is a sense of accomplishment for sticking it through. And there are fuzzy, warm motions stirring inside today, and I can’t help but smile.

It’s hard to believe that 365 days have come and gone, but the day is finally here!

Today, there is a purple sunrise, and it simply feels like a dream.

I’m one year seizure free!

Two years…

It’s been two years since I last saw my neurosurgeon. Two VERY long years.

After my last visit, my doctor had me make my follow-up and MRI appointments in two years because everything was going according to plan. I was off my AEDs and had been seizure free for three years. He just wanted to make sure the dark spot in my MRI scan wasn’t anything to worry about.

Since the last time I saw him, I went from being three years seizure free to having frequent convulsive seizures. Epilepsy had woken up just like the white walkers did in Game of Thrones. The monster had decided it was time to rule again.

The ruling part never happened. I wasn’t going to give up without a fight. I got back on my meds, started figuring out my new seizure triggers and changed my routine to try to avoid them.

The first of the two years was the worst. I spent a lot of time at the neurology clinic. I got scrapes and bruises from my falls. I was exhausted and met more paramedics than I ever wanted to. I scared a lot folks and had to explain to them that I wasn’t crazy, although my husband and friends will tell you otherwise. 😉

Those two years came and went, and it was time for my MRI and to see my neurosurgeon again. For me, the worst part of getting seizures again isn’t just dealing with the entire ordeal. It’s having to tell those who’ve supported me along the way that the fight they thought was over isn’t. The sadness in their eyes hurts the most because I don’t want to see those amazing, wonderful people blue.

To them I say, I’m doing alright! My recent MRI shows no abnormalities. I’m close to re-reaching my one year milestone. Yes, the fight isn’t over, but I’m going to be fine. I still have a lot to do. I need to show the world that even people with holes in their head can do anything they set their mind to.

 

International Epilepsy Day

 

Just in case the title didn’t give it away, today is International Epilepsy Day!

What is International Epilepsy Day you might ask?

In 2015, the International Bureau for Epilepsy and the International League Against Epilepsy came together to provide a platform for people living with epilepsy to share their stories around the world. Now, the second Monday in February is designated to do just that.

Today, 120 countries advocate to spread awareness about this neurological disorder and fight to get legislative rights for people living with epilepsy. The goal is to educate, eliminate the public fear and stigma that comes with this disorder and encourage those living with epilepsy to live their life to the fullest.

Join the Epilepsy Community by helping us get #EpilepsyDay to trend on social media. Make Epilepsy Day successful so we can get better care, improved treatments and greater funds for much needed medical research.

Don’t know where to start? You can visit the International Epilepsy Day website to get some ideas.

Will you join me?

 

Dear Mom,

Mom,
I could tell you that you’re the best friend any girl could ever ask for.
I could tell you that you’re the kindest person in the entire world.
I could tell you that you’re the strongest and loveliest person I know.

I could tell you all these things, but I’d only be saying what you already know.
Instead, I’ll tell you all the non-mushy things I’ve never said before.

Mom,
You’re the most stubborn person I know. You simply won’t stop to rest.
You’re beyond scary. Those “What did you say?” eyes will always haunt me.
You’re a master lie detector. You’re the reason why I’m such a bad liar.

You’re crazy, weird and funny. You’re simply one of a kind.
You’re the wonderful woman I’ll always aspire to be.
Mom, I love you, and I hope you have a great birthday!
 

Monday Reflections: One in twenty-six

Twenty-six people living ordinary lives.
Some learning to walk for the very first time.
Others with wrinkles around their eyes.
All filled with dreams waiting to be realized.

Then, one of those twenty-six is caught off guard.
Their greens turned red. Their ups turned upside down.
Their life taken away by a silent, electrical terrorist.

One in twenty-six people will hear three life changing words.

You have epilepsy.

I’m the one in 26.

I will always be tired.
I will always have a foggy memory.
I will always be a tiny bit moody.
I will always wonder why.

But I will never give up.
I will fight for the next one in twenty-six.
I will be there to offer a helping hand.

 

Living with epilepsy isn’t easy, but it hasn’t been all bad. I’ve learned how strong I can truly be, and how I can make a difference. This past month, I was able to offer some advice to a girl who had just been diagnosed. Being able to help her make sense of everything and guide her through this difficult time has made every painful moment worthwhile. If I had decided not to get back up all those times I thought I couldn’t, I wouldn’t be able to offer her solace today. Sticking it out is difficult, but never impossible. Today I reflect on that. 

November is National Epilepsy Awareness Month: Ready to spread awareness?

purple ribbon

We’re a third of the way into the month so this post comes a little late, but late is better than never. November is National Epilepsy Awareness month, and this is our chance to share our story and educate others about seizures.

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In the winter of 2009, I awoke to confusion as paremedics held an oxygen mask to my mouth. My vision was blurred, and I could barely make out the faces of the people standing around me. Unable to see clearly and hearing unfamiliar voices, I panicked. I attempted to push and pull away, but my body would not obey. If I had the strength, I would have given those paramedics a good fight, but the seizure had left me completely fatigued. Instead, I demanded explanations and screamed why. And that is how my epilepsy journey began.

Almost a decade later, I’ve faced epilepsy in several forms. I faced weekly complex partial seizures that took the energy out of me and made me lose sense of time. I had brain surgery to try and remove the seizure focus. For three years, I was seizure free and regained the independence I’d lost. In 2016, the convulsive seizures began. After several attempts, I got my seizures under control. Today, I’ve finally gone eight months seizure free once again! This journey has been a long one, and it’s far from over, but I’m okay. I’ve survived and become so much stronger along the way. And this is thanks to all those people living with epilepsy who have shared their story with me. My hat goes off to them!

Epilepsy is the fourth most common neurological disorder. If a person has two or more unprovoked seizures that have occurred without having a known or reversible medical condition, they are diagnosed with epilepsy.

Epilepsy is a spectrum of seizure disorders that varies from person-to-person. Brain injuries and other medical conditions can be a cause for epilepsy, but most people never learn the underlying cause for their seizures.

Even if you don’t have or know anyone who has seizures, it’s important to get educated. Will you help me educate others?

It’s National Epilepsy Awareness Month. Let’s LEARN! 

 

 

Tuesday Ramblings

Everyday we learn new things. Our surroundings make us look at things in a different way. What we hear shapes our thoughts and opinions. Whether we learn something good or bad, everything we perceive is processed. Visual, acoustic and tactile perceptions are encoded and become part of our short-term and even long-term memories.

Last week, I learned something VERY important. Okay, maybe it’s not that important, but something worth mentioning. It’s the last piece of solid advice my old boss passed down to me. So what is this great piece of wisdom he bestowed on me? Well, here it goes.

Everyone hates Mondays. They are terrible because the fun has come to an end, and we must carry on with our adult responsibilities. Plus, who can possibly love a day that marks the conclusion of happy times?

On Tuesday, everyone has just survived Monday, but the long week is still ahead. Friday can’t even be seen in the distance.

On Wednesday, everyone is like “Yass, it’s humpday!” We’re almost there, and the worst is far behind us.

On Thursday, you can see the finish line! Friday Jr is here, and freedom is just around the corner.

On Friday, everyone is FRIYAY! We have those Friday feelings, and the finish line to happy hour is finally here.

In conclusion, there is no point to Tuesday. It is by far the worst day of the week, and it simply sucks!

Monday Reflections: Monday Blues

I hold my breath and close my eyes hoping the pain will come and go. I try to go on as if it was just another day. There is no denying that the sunset has left and the sunrise has followed. It is another day, but it’s another day without you here. When I read the text message last night, disbelief is all I could feel. I didn’t cry. I didn’t get angry or ask why. I replied to my sister saying to let me know when the funeral arrangements would take place. I said goodnight and went to bed.

Today, I sit at my desk trying to hold back the tears. It’s not like I didn’t see it coming. You weren’t doing well, and the doctors said it would be a matter of days, but I wish they hadn’t been right.

I think about the last time I saw you and how now I never will. You grew up with my family. You were one of us kids. You were my brother’s best friend and a big brother to my sister and I. You made us laugh and helped us beat up our brother because he was too big. You were there to pick us up when we needed a ride from school. I still remember the white mustang waiting for us outside of school. Out of that small, two door car, two big, bald guys would get off to let us in the back seat. It was hilarious to see you both get out of such a small car.

As we grew up, you were there for all the milestones. My sweet fifteen, high school graduation, college graduation and wedding. Even through the difficult times, when my grandparents and great-aunt passed away, you never failed to pay your respects and give us a warm embrace.

Life is funny and has a way of bringing the smallest memory back to light. Each of those memories will make me laugh because of all the dumb things you and my brother would say. Those memories will also make me cry because your life was cut way too short, and we won’t be able to make new ones.

I’m not sure why things happen the way they do, but I do know you were a wonderful person and a great friend. Others might have thought you were a rough, tough guy, but those who knew you well, will remember the big teddy bear inside.