Hi! My name is Lori, and I have epilepsy. Since 2019, I have suffered from this disorder. I have struggled with frequent, severe seizures that drastically impact daily life and safety. Not many people know that I have epilepsy because it is something that I have been embarrassed to talk about.
I have three daughters and a 7-year-old granddaughter who have had to watch me go through these awful episodes. They have expressed how they experience fear, anxiety, and guilt. My Mom is my biggest supporter. Without her, I don’t know how I would of made it this far. They all wish they could do more for me, but I always let them know that their support and love help me in a way that I can’t even describe.
After thorough evaluations, the doctors at Shands recommended that I have a Stereotactic electroencephalography (SEEG). It uses electrodes placed directly in the brain to identify where epileptic seizures start. I will have to stay in the ICU for at least 2 weeks and have a two-week recovery at home. This will give me a chance at a seizure-free life. If they can find where the seizures start, they will do a second surgery where they take out the piece of my brain where the seizures are coming from.
Living with epilepsy has taken a huge toll on my life. I’ve lost my independence and the ability to do many of the things I once took for granted—like driving, being social with family and friends, or even being alone without fear. Every day brings uncertainty. I feel anxious, sad, and often hopeless, not knowing when the next seizure will strike or how it might affect me. This has also taken a toll on my family.
This condition has made even simple tasks feel overwhelming. I’m doing everything I can to stay strong and manage my health, but I can’t do it alone. I will be out of work for 4 weeks for my first surgery, and hopefully, I will be able to have the second surgery, which will put me out of work for up to three weeks. Unfortunately, I will not be getting paid for most of the time that I am out of work. I am going to have over $20,000 in copays just for the first surgery plus my household expenses.
Your support means more than words can express—whether it’s through a donation or simply sharing this page, it truly makes a difference. Thank you so much for taking the time to read about my story.
