Monday Reflections: Lingering Monster

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

Let’s Walk to END EPILEPSY!

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

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.

 

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! 

 

 

Monday Reflections: The Beast Within

How do you live with a monster in your head?
How do you continue when it tries to knock you dead?

I’ve found myself caught between two worlds.
There’s the easygoing Dr. Jekyll.
And there’s the frightening Mrs. Hyde.

Jekyll and Hyde.
Which one really am I?

I can’t control the latter.
I want to hold onto the former.

When there is no solution, there are two things you can do.
You can succumb to the maddening sadness and let it take its toll.
Or you can make the best of the situation with all your heart and soul.


My Monday Reflections:
We never know what cards we will be dealt with, but it’s fruitless spending our energy trying to alter the things we cannot change. Life must go on. Why not make the most of it with the ones we love?

 

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

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!

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!