Get Fit Texas Volunteer Shares Her Story of Living with Epilepsy

epilepsy stories, overcoming epilepsy, living with epilepsy, get fit texas, fitness program for people with disabilities in texas,

Meet Isaure, one of our Get FIT Texas volunteers. Learn her inspiring story of living with epilepsy and how fitness and nutrition have made a difference in her life.

 

epilepsy stories, overcoming epilepsy, living with epilepsy, get fit texas, fitness program for people with disabilities in texas,

 

What’s your connection to epilepsy?

I was diagnosed with epilepsy freshman year of college. I remember the specific night that I decided I needed to see a doctor. It was around finals time…the end of my very first semester of college. I was sitting on the futon with my roommate watching TV, when suddenly I hit her extremely hard across her chest. Let me paint the picture a little more clearly: I lost control of the left side of my body. It was like someone took my arm and slung it violently at her. The look on her face was priceless. And she immediately looks at me and says, “You really need to check that out.” I was so embarrassed I called my father the same night and told him I needed to see a doctor as soon as I returned home.

December of 2006, I had my appointment. So many questions raced through my head: What was wrong with me? How did this normal girl become, well, the weird one? After a few tests it was clear. I was diagnosed with temporal lobe epilepsy. I returned back to school taking 10+ pills a day. I was constantly sick. I was always vomiting or shaking. I continuously dropped things… I was “weird.” But I was also blessed – I made friends that first semester who helped me along the way. They would hold drinks for me. They would opt to miss parties if I wasn’t feeling well (which is a much bigger deal than it sounds). I became the “sick friend” and I HATED it.

I graduated from Purdue in December of 2009 and moved to Chicago to work for an advertising agency. Once again, this meant new friends and a completely new environment. As the years went on, my health steadily declined. I was surrounded by young, vibrant, and creative people whose creative juices flowed most abundantly when alcohol was involved. I became one of those creative people, and with the alcohol, came the food. I was the complete opposite of what I used to be. My epilepsy became more of a problem, with hard to control seizures. I didn’t like being the sick girl. I let epilepsy become who I was, my identity.

After three years in Chicago, I decided to return to Houston because I no longer felt safe living by myself. What used to just be “twitches”, some shaking – petit mal seizures, here and there, started to turn into grand mal/tonic clonic seizures. I had one at school. I had them when out with friends. I had them when I was by myself. I even had one at the pharmacy while picking up my epilepsy medicine.

I had become depressed and scared. I put in my two weeks’ notice in at work and returned to Houston. My epilepsy began controlling my life, rather than me controlling my epilepsy.

Flash forward two years, I have now taken control of my epilepsy. I am no longer vulnerable and dependent. I am strong – not just physically, but mentally and emotionally. Yes, I still have “bad days”  – but they are tolerable. Stress is the only thing that hangs around sometimes. But at my age, if you aren’t stressed every now and again you aren’t working hard enough!

 

What have you done with fitness and nutrition following your diagnosis and how has it impacted you?

Living with my parents for a few months forced me to drink considerably less alcohol; so I used the gym as my escape. Though I had always worked out, (including all the years in Chicago), I had lost focus. Feeling forced to leave Chicago opened my eyes to what my life had become.

After several doctor appointments, I started to really take his recommendations to heart. I got more sleep I cut out alcohol. I tried to worry less about things that I had no control over and I decided to become active again… much more active.

I have continued on my fitness journey, or should I say, my health journey. I contacted the same trainer that I dreaded seeing when I was in high school and asked him to work with me again. My trainer asked me to consider participating in fitness competitions but the person with epilepsy in me was terrified. With the encouragement of my trainer, I have been competing since November 2014. And as a result, progress! With my new exercise and fitness routine and diet, my epilepsy is under control. I have been able to lower my medication from 8 pills to 6 pills.

 

What have you learned from your journey so far?

After all is said and done, I am currently working on receiving a Personal Trainer Certification because what I have learned along this journey is that you can’t do it alone. Or even if you can, it is extremely difficult. If I didn’t have experienced athletes, trainers, physicians, and my family around me I may have never been able to truly gain control over my seizure disorder. I have gone from normal, to weird, to strong all in a matter of 9 years. I couldn’t feel anymore blessed than I am right now. If I can help just one person get their life back, to feel a sense of control, then I have done my job. I have accomplished something for the day.

 

What motivates you?

My health motivates me! I am not a bodybuilder. I am not truly concerned about my appearance. But I strive to be healthy. I am fortunate that my love for fitness and nutrition is what ultimately saved me from, well… myself.

 

What advice do you have for others living with epilepsy?

I tell people, “Love yourself, all of yourself.” Love yourself so much that no one would ever dare to say they love you more. And when that person does come around, use their love to enhance your own. Never let anyone dictate your self-worth or control your amount of confidence.” I also tell people, “Normal is boring. Be weird. Embrace it. Why would you want to be normal anyway?”

I used to be afraid to tell people I had epilepsy. I was embarrassed. But, you can take control of your life. It may take some time and it may be hard to do. But once you figure it out, you will never go back. It’s not the fact that I am seizure free that brings me joy; it’s the fact that I am not bound by my disorder. It’s the fact that I don’t feel like I have a disorder at all. I have a life. Just like everyone else. I have a life that may require a little more attention, a little more planning, a tad bit of monitoring; but it is MY life. I am doing more than surviving, I am thriving. Never simply live, but be alive.

Smile when you are upset. Girls, dress up. Feel good about yourself. If that means wear make-up, go on and paint your face. The days I feel the worst, I try to look my best. It’s all mental for me.

I also tell people that in order to control your life, you need to control your kitchen. Nutrition is half the battle. Make cooking fun. Plan ahead and become your own master chef. Learning the value of nutrition is imperative.

 

Get FIT (Fitness, Integration, Training) Texas is a program funded by the Texas Council for Developmental Disabilities.

get fit texas, fitness program for disabled people in texas, fitness for people with disabilities, government fitness program for people with disabilitiesIt is a grant project funded up to five years in which the goal of the project is to establish fitness and a healthy lifestyle program for individuals with developmental disabilities (DD) and epilepsy and their caregivers in rural communities of Texas.

Participants will be working with a certified fitness trainer during the 12 week session with a pre-assessment and a post-assessment. Each participant will receive an individualized fitness/exercise plan, in-home private coaching, nutrition guidance, ongoing motivation and support, weekly health tips and monthly newsletters, along with a Get FIT Texas pedometer.

For more information or to register for the Get FIT Texas Program, please contact Ryan Stoick at 888-548-9716 or at rstoick@eftx.org.

  • Share