epilepsy

Monday Reflections: Lingering Monster

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A fun-filled night out with friends.
A few good smiles and laughs.

Some heartbreaking news.
Some sorrow-filled tears.

Whatever the reason.
Whatever the cause.

The memories still haunt.
The monster still lingers.

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I’ve been seizure free for 15 months now. It’s a length of time that I thought I would never see again, but I finally did! As the distance of when my last seizure occurred increases, you’d think the fear would have slowly faded away by now. This is not the case.

There is no certainty that the monster will never strike again. There isn’t a lifetime guarantee, and there is a lot of fine print to read.

The decisions I make everyday are not made lightly. If I want to stay up late and have fun with my friends, I need to carefully consider the consequences and take steps to minimize them.

When things become overwhelming and the heartache is very strong, I need to remind myself to focus, cope, cry and move on.

Whether the moment is created by extreme happiness or sad misfortune, the monster can still be triggered. That cloud of fear won’t ever be gone, but I need to step back and just breathe.

Neither of us chose this, but neither of us need to go through this alone. One can’t always be strong, and I’ve stumbled a lot more times than I’ve let on. But I’ve found a place where I can listen and be heard, and you should find yours, too.

Finding your place can make a world of difference, and today I reflect on that.

Epilepsy Foundation of Texas: Support Groups

To my Game of Temporal Lobe Fam

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Epilepsy is much like the weather. It’s unpredictable and always changing. A sunny, 85 degree morning can quickly turn into a 58 degree with scattered thunderstorms afternoon.

With epilepsy, you can never predict what will happen next. You prepare for a picnic. Lightning strikes, and you have to watch the latest documentary on Netflix.

The weather is very unfavorable when we really don’t need it to. But through sunshine and rain, each of you have been right beside me.

Whether you were there at the beginning or met me along the way, I want to thank you for supporting me.

Thanks for putting up with my nonsense. Thanks for listening to my randomness and laughing, even when my jokes weren’t funny.

You gals and guys are the best! It’s because of you that my Walk to END Epilepsy this past weekend was such a success.

From the bottom of my purple heart, thank you, my ever-growing epilepsy fam!

 

 

Let’s Walk to END EPILEPSY!

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I’m participating in the Walk to END EPILEPSY, and I want to invite you to support me in helping raise funds for the Epilepsy Foundation of Texas.

As a person living with epilepsy, this is a cause that is close to my heart.

Epilepsy is the third most common neurological condition, and it affects more than three million people in the US alone.

There is a lot of stigma surrounding this disorder. By increasing awareness, we can spread important and accurate information about epilepsy. We can educate others about seizure first aid and end the stigma surrounding epilepsy.

The Epilepsy Foundation provides many needed services to the over 15,000 people living with epilepsy and seizure disorders in north and east Texas.

Join me in helping raise funds for an important organization that creates life changing opportunities for people living with seizure disorders.

Please consider making a donation on my fundraising page at the link below. No donation is too big or small.

Walk to END EPILEPSY

If you are around the area and would like to take a walk with me,  join my team Game of Temporal Lobe.

The Epilepsy Foundation Texas – Houston/Dallas/Fort Worth is a recognized 501c3 non-profit organization and all donations are completely tax deductible.

Thanks!
Vero

Seizure free for one year!!!

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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…

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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

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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

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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?

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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!