Sharing a Connection to Others with Epilepsy
My name is Sabrina Foust and I was diagnosed with Epilepsy in 2nd grade at years of age. I found out about Epilepsy Alliance Florida a long time ago. Through a Vocational Rehab social worker and got assistance finding a job. When I first reached out to Epilepsy Alliance Florida my seizures changed to Atonic and complex partial. I used to have auras, but now things have gotten much worse and I am now out of a job. I have memory issues and can’t even keep thoughts clear, I feel useless, and have a hard time getting out. My mom said it right, “Epilepsy is a disease of isolation.” Epilepsy Alliance Florida gave me a way and a reason to get out. Even if it that doesn’t seem like much to most, it really is important to me a way of not feeling so isolated.
I have participated in Monthly meetings – Luncheon Activity & Christal Davie (my CM)– were good ways in meeting others who had epilepsy. They share the same issues. Some more than others. I was able to connect to two of them. The others I do not know as well. Christal helped me find resources. As much as she was able to. The most significant change since joining AND participating in Epilepsy Alliance Florida activities – connection to others. I am not as good at it as the others and forget or close in myself. The meetings have helped with this.
My current challenges and I imagine my future challenges very much look the same. I cannot go out without fear of falling. I use my wheelchair if I do go out and often I end up sitting in the car. Not much of an existence. That’s why I need the handicap tag for my parents’ car. I am still having seizures and my lack of retaining information scares me. I am not sure I would be able to hold down a job or even use the equipment I had been using before having to leave work.
It is hard to remember what I initially felt and went through when I was first diagnosed. I know I was emotional. Whoever gave me my first meds – I overdosed on the medication. I was on 1200 mg of Tegretol from the get go. My seizures are still not under control. I am on four medications at the moment: Fycompa, Carbatrol, clonozopam, Levetiracetam. I am afraid of getting the VNS, but I have looked into it. There is a program with my insurance Ontrak that has services to apply in modules. Health, psycological, nutrition, I plan to utilize those programs in the future. My goals in the future are to focus on my health, lose weight, and hopefully be able to reduce the amount of medications I am required to take.