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. 

Searching for Shades of Purple

It’s hard not to fall back on this color this month. March 26 is Purple Day: Epilepsy Awareness Day! It’s a day meant to educate people about this neurological disorder and support those who live with it everyday.

Purple is a beautiful color. It falls between red and blue on a color spectrum. It’s right in the middle of the warmest and coolest colors.

Epilepsy is a brain disorder that involves spontaneous, recurring seizures. A seizure occurs when electrical activity in the brain is disturbed and excited parts of the brain are not able to perform their normal tasks. During a seizure, there can be alterations in sensations, movements, awareness or behavior. There are several types of seizures so no two cases can be considered identical.

There is no cure for epilepsy, but there are treatments that can help eliminate or reduce the occurrence of seizures. Several types of medications can be taken to keep seizures under control. Different types of surgical procedures can be performed to remove the seizure focus or brain lesion, such as tumors and scars, which may be the cause for the seizures. There are also therapies like the Ketogenic diet and Vagus nerve stimulations that can be used help get rid of seizures. The specifics of treatments will be given at a later time. This month is a journey toward purple after all.

I’ve come to learn that there is a delicate balance between the right combination of medications used and precise dosages needed to keep my seizures under control. Medications have failed to succeed for me so I sought out brain surgery. I’m nearing the end of my seizure disorder and at the beginning of my post-operative recovery.

I’ve been caught up in each extreme of a color spectrum. I’ve felt the blues just to turn around and see red. Purple is right in the middle between the brightest and darkest days I’ve faced. In that stable intermediate, I’ve found composure. It may take time to get to your right shade of purple, but together I believe we can get there. One day, we will all end up right in between the good and bad. I wear purple not just because I’m a person living with epilepsy. I wear purple because I am part of something worth fighting for. Purple Day is for you and I! It’s a reminder for us to fight a little harder for the battle we will both win!

Will you wear purple with me on March 26?