epilepsy awareness

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! 

 

 

2018 Stroll for Epilepsy here we come!

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With trying to get my seizures under control and adjusting to my new meds, unfortunately, I won’t be making it to the National Walk for Epilepsy in Washington this year.

However, this doesn’t mean I can’t walk here in Texas!

If you’re in the area and would like to walk for a good cause, please join me in strolling at the 2018 Stroll for Epilepsy in Dallas, Texas.

My team, Game of Temporal Lobe, will be raising awareness and funds for the Epilepsy Foundation of Texas, and we’d love for you to be part of our team!

 

Friends, let me introduce you to my annoying neighbor “E”

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Faces smiling and eyes half rolling at my quirky, silly manners
stare back at me with a hint of sadness and worried expression.

The laughter and “you’re so funny” occurrences have forever vanished.
Their ending brought on by my most recent tonic-clonic seizure.

After much needed rest, I went back in with my usual witty self,
but the frightful scene from the day before had already left damage.

They’ve seen the monster within, and I don’t blame them for their caution.
But I promise, I’m feeling better today, and this monster will never win!

After dealing with this disorder for almost a decade, you forget how frightful it can be, not just for yourself, but for those looking in and trying their best to help. For those old friends that have stuck through it and for the new ones I’ve made along the way, thanks for everything you do! I’m sorry I scared you, but, really, I am fine.

This past year has been a relearning of my epilepsy in its new form. It has been difficult. Trust me. I got a lot of bruises and cuts to prove it! It was tough, but I survived because of all of you. Come on, put that sad face aside, I’m still smiling and so should you!

A National Walk for Epilepsy Thank You

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This past weekend was the National Walk for Epilepsy in Washington, D.C., and it was a great one!

It’s wonderful being surrounded by people who fight for a better tomorrow for those living with epilepsy. Being an epilepsy survivor, this event means so much to me.

This eFight is a difficult one, and, at times, it seems impossible to go on. But, this doesn’t have to be the case.  In this walk, we help make each other stronger, as we work toward the same goal.

We walk to find a cure for epilepsy!

I am so thankful for all the donors and my teammates who supported me along the way. The walk was a success because of them!

To everyone who participated in the National Walk for Epilepsy, I want to thank you from the bottom of my purple heart!

Unite and Wear Purple

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Go Purple Epilepsy Logo

For the past couple of months, I’ve been preparing myself for the National Walk for Epilepsy in DC. As I made my daily walk the other day, I realized the amount of progress I’ve made since surgery.

Fifteen months ago, brain surgery had left my body weak. It was impossible to make it from my bedroom to the living room alone. After a couple of months, although with difficulty,  I was finally able to walk from my doorstep to the mailbox. Today, I can walk, jog or run for as long as my not so athletic self can handle.

I’m proud of my accomplishments, but I can’t say it was easy getting there. Along my path to recovery, there have been many hurdles. I’ve felt like giving up more times than I can count, but I didn’t.

If there is anything epilepsy has taught me it’s this:

When you think you’ve taken one step forward just to take two steps back, don’t fret because it isn’t over. Life is a sea filled with mild and dangerous tides. Sometimes we need to be pulled back to come back so much stronger. The rough patch will pass, as long as we keep treading on. When all is over, we’ll realize the hurdles are nothing more than a nuisance because we are capable of walking through it all.

Today is Purple Day – Epilepsy Awareness Day!

It is a day I look forward to each year because it is a symbol that epilepsy doesn’t have to be a lonesome battle. When we come together on Purple Day, we take a step forward in finding an end to epilepsy.

So let’s talk about our seizing struggles and what we’ve done to hold strong. Educating others about epilepsy is important. We want others to be there for us just as much as they want to be there for us too. By raising awareness about this neurological disorder, we can do that.

This fight cannot be won alone, but I know we can all win. Let’s paint the world purple and spread awareness about epilepsy all around the world! 

Here are some links to help get you started.

Purple Day: http://www.purpleday.org/aboutepilepsy
Epilepsy Foundation: http://www.epilepsy.com
National Walk for Epilepsy: http://walkforepilepsy.org