The Perfect Patient

There are many things I can say I’m good at. There aren’t many things I can say I am great at, but there is definitely one thing I can say I am perfect at!

I’m a perfect patient! And I don’t mean the “patience is a virtue” kind of thing. I have yet to meet someone who truly has patience for every single little thing.

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Epilepsy and Me

My body rattles. My body shakes.
The tongue is bitten. The tooth breaks.

Unconscious monster has awoken.
And I am here left broken.

Were the last three years lost?
Was surgery worth the cost?

While there is hurt in my soul,
I have not lost my goal.

There is beauty in tears,
And no reason for fears.

I have my purple support system
to guide me with their wisdom.

With them, the impossible is possible.
With them, I’m unstoppable.

My epilepsy battle might not be over, but neither are my spirits. This girl is going to kick Epilepsy’s butt again!

A relapse into hell’s kitchen

How did a three-year streak turn into three-days? How did the renewed independence and freedom disappear with just the change in time? These and so many more questions swirl in my mind, but will I ever find real answers to any of them? Most people never find the underlying cause of their epilepsy. I know I never did, but I at least thought I found the end to that journey.

Boy was I wrong!

I was just waiting for the clock to strike midnight so I could send my twin sister a happy birthday message, but I never saw the time change.

I awoke to confusion. Saliva spilled across my pillows and cheeks. “Vero, do you know what just happened?” my husband asked.

“What year is it? Who’s the president of the United States?” he continued asking.

I’ve heard these questions asked several times before, but these questions were only ever asked to me when I had a seizure.

“Why are you asking me this?” I asked him.

“You just had a seizure. Please answer me.”

“Don’t say that! Please don’t say that!” I screamed.

But he had to say it because it was true.

I woke up in hell’s kitchen again. Epilepsy came back full force to wish me a happy birthday this year, and I spent the better part of the morning making calls to my neurologist and dentist so we can come up with a new plan.

Am I disappointment because of all the progress I made these past three years? It would be a lie for me to say it wasn’t. Yet, as I stare at epilepsy face to face again, I’m not angry, just a little a sad. I’m not back at square one. I beat you once my strange friend, and I’m willing to do it all over again.

#MyEpilepsyHero

I wouldn’t have made it through my epilepsy journey, if it hadn’t been for all the love and support I received from my amazing family and friends. It was because of my wonderful purple support system that I was strong enough to make it out of those toughest storms.

I owe them plenty. They are all and will always be the greatest epilepsy soldiers and heroes I know!

Yet, there is a BIG thank you deserved to a man who is responsible for the “C” shaped scar on my head.

Dr. Bruce Mickey is a man with the bravery of Bruce Wayne, in order to put up with the likes of me as a patient. He is a great doctor who wears the kindest smile, just like the happiest mouse in the world. He is #MyEpilepsyHero.

Dr. Mickey is a wonderful neurosurgeon who not only left me with a cool haircut, but left me seizure free! Thank you for my seizure freedom, and thank you for your continued care!

And as promised, here is my MyEpilepsyHero shout out.

 

Happy Three Year Brainaversary!

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It’s hard to believe that 1,095 days of seizure freedom have passed! The time where a couple of weeks without a seizure felt like a victory is now a distant memory.

I am so happy and thankful for my family and friends who’ve helped me along the way. I can never repay them for all the love and support they have given me, but I hope this small brainaversary entry will show them how grateful I truly am.

Children have monsters living under their bed.
My hidden monster lived inside my head.
Covering myself in blankets would not help a single thing.

Although the doctors tried to put the puzzle together,
I always felt like a broken porcelain doll forever.
Hiding and crying, you were there to put me back together again.

Thank you my purple support system for giving me a listen.
Thank you for your pep talks and words of wisdom.
Thank you for all the times you made me see reason.

I know I wasn’t the most patient of girls,
especially when that monster gave me a swirl.

Even with all my fits and tantrums,
you helped me fight my phantoms.

Thank you my purple system for all that you continue to do.
It is because of you that I am whole and new!

To everyone out there with a hole inside their head, I want to wish you a Happy Brainaversary!

November is National Epilepsy Awareness Month!

National Epilepsy Awareness Month Banner

It’s time to paint the town purple again! November is epilepsy awareness month, and what better way to celebrate than by recognizing those who’ve made a difference in our epilepsy journey?

In honor of National Epilepsy Awareness Month, Sunovion Pharmaceuticals and actor Greg Grunberg are teaming up to recognize those that have made a positive impact and have provided support to the epilepsy community.

Starting November 1 through December 16, post a video or photo of your epilepsy hero using the hashtag #MyEpilepsyHero on Facebook or Twitter. When 500 posts have been reached, Sunovion will donate $10,000 to the Epilepsy Foundation.

I’ll be creating my own video later this month so keep an eye out for it on the blog!

So who’s your #MyEpilepsyHero?

I could have had it worse…

MRI Scan

I remember the kicking and the screaming I did so long ago.

Why me? What did I do wrong? It’s not fair! I was a repeating record.

Now, I sit here almost three years later, massaging the small dip in my skull.

I know now that I could have had it much, much worse.

An occasional strong, spiking headache is what’s left of my seizure disorder.

The empty bottles I won’t have to refill anymore lay abandoned in my night stand.

Almost a decade ago, the kiddy tantrums felt necessary, and I did get more that just bumps and bruises from those futile scenes. I learned something, too.

Instead of being angry at the entire world, I learned that my energy was put to better use in fighting my battle against epilepsy. After all, it wasn’t anyone’s fault, and throwing a fit wouldn’t solve anything.

Looking back, I know I could have had it so much worse.

I could have had over 100 seizures a day. I could have been unable to finish college and find a job.

I could have gone through those painful months of recovery just to find out surgery didn’t work.

I could have, but I didn’t. I survived.

So I sit here hoping that this electrifying storm passes by soon, but if it doesn’t that’s okay.

It’s okay because my epilepsy battle is coming to an end, and I’m going to come out so much stronger.

A Pay it Forward Breakfast

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In the news or on social media, there are always stories where someone unexpectedly pays for someone else’s bill or groceries. Those acts of kindness are indeed very nice, but do they really happen often?

Yesterday, I wouldn’t know what to answer. Personally, I don’t know anyone who has had that happen to them, with the exception of a college friend who got free dessert from a waiter who was trying to hit on him. But, I’m guessing that doesn’t count? 🙂

This morning, my husband and I went to get some breakfast at McDonald’s. We noticed that the person in the car in front of us handed the cashier his card twice, but we didn’t think much of it. When we pulled up to the window, the cashier told us the man had paid for our breakfast.

I don’t know who the man in the black Altima is, and I know I never will, but I’m very thankful for his kindness. I really needed a yummy biscuit and a warm cup of joe today. It makes working with a stuffy-cold feel not so terrible.

So I guess pay it forward stories do happen. Now, it’s my turn to return the favor!

Monday Reflections: Not Again

They say with age you get wiser, and through those years, you’ll learn from your mistakes. I guess I haven’t.

When I was seven, my parents were expanding the house. I should have known that construction and nails come hand in hand, but I was a kid; and it was summer.  It was just 85 degrees, which is very good weather considering hot Texas summers.

Eager to do who knows what outside, I ran out of the house without my shoes on. I wasn’t much more than a few feet out the door when I felt something pierce the bottom of my right foot.

Instantly, I remembered what my parents told me time and time again. “Don’t go outside without your shoes on!”

As I lifted my leg, I saw blood dripping down. Oops, I thought. I knew my parents wouldn’t be so happy about this.

I hopped all the way inside, leaving behind a red trail. They found it funny seeing me hop around. Their happy expression soon faded, as their glance fell on my foot. My mom being a mom started to cry. Giving me a disapproving look, my dad took a look to see the damage I’d made.

The thing I should have learned from this is to never go out barefoot when nails could be near by. Now, let’s flash forward two decades later.

Summer, 85 degrees, barefoot, water gun fight…nails…blood

Yes, I did it again! I managed to get stabbed by a nail on my right foot.

No one told me to run toward the guest house being constructed in the back of my parent’s house. No one told me to, but I just needed to get away so I could load up on some more water ammo.

I’m an adult now so it would look very ridiculous to see me hopping around. Instead, I just hold the pain in, as I try to walk as normal as possible.

So what do I reflect on today, then? Should I reflect on the things children do that they shouldn’t, or do I reflect on the fact that adults do the same things too?