Epilepsy Doesn’t Just Affect Me

October 11, 2020

Epilepsy Doesn’t Just Affect Me

I was diagnosed with epilepsy at around 18 years old. It was right after a car accident. During the car accident and got whiplash and my brain “jiggled” against my skull causing my seizures to start. I remember that first seizure. I was at PT and remember yelling at my son for jumping over the chairs in the office then I just dropped into the seizure. My son was around 2 years old at the time, it was really hard to deal with. I remember thinking “this isn’t going to work, I can’t have this right now, I have a two-year-old I have to take care of.” Then there is so much that changes when you get diagnosed, no driving, no cooking, no baths and there is all the medication. My son really took everything in stride even at two years old.

When I first joined Epilepsy Alliance Florida, it was because my neurologist, Dr. Maquera recommended EAF to me. I had just lost my insurance and didn’t have anywhere to turn. Everything scared me, because I didn’t think I could do anything on my own. Since my diagnosis someone was always doing things for me, that understood insurance/health info/technology better than I did.

 EAF has helped me gain more confidence in myself and my capabilities. My Case Manager has taught me to how to do things for myself. She has walked me through filling out paperwork and explained how to do it without making me feel insecure about not knowing how. EAF has helped me by finding savings and free programs for my medications. Without access to affordable medications I was having to pay the equivalent of a car in medications. Saving that money has made a big difference. With the help of EAF I also make sure I get those medications on time.

This makes me want to do more. To at least try, even if I can’t do something at least I tried, and if it doesn’t work, I now know how to ask for help.

A major challenge I am currently facing is that my father is getting older and I am having to switch gears from being cared for to caring for others. The stress of this is really taking a toll and I am worried depression and the stress will take a toll on my body. Also, in the near future I am going to be having my VNS battery replaced.

My seizures are primarily under control, I did have a few breakthroughs, but my neuro discovered it was because my VNS battery needs to be replaced. When the VNS battery is at full strength with the addition of medications. My seizures are controlled.

My goal for the future is getting a part time job and being able to work. Finding out what else I am capable of.

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