Dear Epilepsy…

It’s been two years since we had our last fight. Although it wasn’t one of the most violent ones, it also wasn’t the least. The fear you swept right through me that night I’ll never forget.

Panic. Terror. Dread. Those are the things I remember the most. You were very determined to ruin the tranquility I’d gained in your absence. 

Long before I heard my Apple Watch alert me that my heart rate had spiked, I knew you were here. You’re almost like a sixth sense now, and I know when you want to take the driver’s seat. 

Your aura always feels like a scene from a nightmare. You want to run, but your legs won’t move. It’s slow and fast. It’s still and moving. It’s a painful slow motion picture and time-lapse all rolled into one.

Luckily, the meds made sure you didn’t stay for long, and I was able to regain some composure. 

Two years have come and gone, and you’ve kept quiet. It feels strange and surreal. And it feels SO good! 

These past twelve years have been a crazy ride, and I’m sure there will be many more bumps along the road. But I’ve learned so much in this journey, and I’m ready to take anything head on. So buckle up and stay in the backseat my annoying friend because the driver’s seat is all mine!

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I’ve climbed and soared. I’ve stumbled and fallen. I’ve gained hope. I’ve lost some. I’ve smiled. I’ve cried. I’ve gone through all the motions, but I’ve never given up. Because of persevering through that struggle, I am finally two years seizure free!

The happiness this milestone brings is overwhelming, and I can’t wait for the next one to get here! As I move forward, I know what comes next will not be easy. Let’s face it. When will it ever be?

But whatever comes my way, I know I can handle it because I have all of you. Your support has fueled me and kept me going. These two years were a success because of you. THANK YOU!

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?

 

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. 

Monday Reflections: Silver Linings

When your thoughts become overcrowded,
remember there is a silver lining behind each dark cloud.

When the hefty storms leave you feeling like a weeping willow,
remember the tempest will leave behind a beautiful rainbow.

At times, the world will seem overwhelming.
At times, everything will be overbearing.

But when you feel like you’re at your weakest,
remember you are not alone.

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My Monday reflections: Life isn’t perfect, and we all have different obstacles we face. Your problem might be different from mine, but we all go through the same motions. Knowing this, lets me realize we share the same experiences so we aren’t going through life alone.

Let’s all talk about it and raise awareness for National Epilepsy Awareness Month!

National Epilepsy Awareness Month Banner

November is epilepsy awareness month. And as the month rolls on, I look at my disorder and see how it has come, gone, returned and evolved in the process.

Epilepsy monster, medicines upon medicines never calmed you.
After years of toil, I thought surgery would do the trick.
For three years, you laid dormant and silent.
I thought I was free of you for good.

Now, you’ve come back with so much anger.
You are no longer the small bursts of blank stares I faced daily.
You announce yourself with a sense of impending doom.
And present yourself with a giant convulsive charge.

You’ve stricken fear in those around me.
You’ve even shaken me who knows you best.
Epilepsy monster, you can play with my mind.
But you will never have my soul.

Epilepsy is a seizure disorder that affects 65 million people in the world. Share your epilepsy story, and let’s help raise awareness about this neurological disorder because we are not alone!