I have several different types of seizures: focal complex partial epilepsy intractable with status epilepticus and dysplasia cortical. I have a portion on left side of my brain that literally doesn’t work so my right side is much weaker. I’m unable to work so am on disability which was never my plan in life. I wanted to follow in my mom’s footsteps and be a social worker. But even though I live on my own, pay my bills, I can’t drive. I take 4 different seizure meds, almost 20 pills a day, and have been told by best of best at Mayo clinic neurology that the chances of me ever being completely seizure free is unlikely. Surgery to remove the part of my brain that is nonfunctional is nearly impossible and too risky. I do have the VNS implant but doesn’t seem to do much. It’s so frustrating. I have an amazing fiance who stands by me through it all. We are now just moving in together on Dec 1st, plus trying to plan a wedding. There’s days I think he deserves better and we should go our separate ways. I hate having to ask him to do stand by and assist when I’m showering. And, my seizures are getting worse.
Age Diagnosed: 18
Hobbies: Not a lot puzzles