What a day. I've always wondered what the cause of my seizures are, and it seemed to always be related to a stressful time, though it can't be medically proven. Today was one of those days.
Yesterday I hit day 10 seizure free. Some people may think, "wow, that's it?" but others more like myself may feel amazed. I went from having at least one a day to going 10 days without one. This to me is a new lifestyle.
However, I do have a goal that my doctors and I have set. My number 1 goal is to be seizure free. My next goal is to be seizure free without the medication that has negative side effects. I've been relying a lot on my great doctors. Sending them my brainwaves twice daily for them to analyze, calling them with numerous questions looking for a direct answer, reporting to them if frequent seizures are occurring, and taking their brilliant advice to get me to the next step towards success. Today there was a change. I need to make a decision on my own. I have heard the ups and downs from my doctors, but the decision is in my hands.
I am a teacher of very young children. Because of my frequent seizures and possibility of surgery, I needed to go on a disability leave starting in mid October. After learning my surgeries were in mid November, I learned that the recovery time is about 4-6 weeks. My thoughts, I'd be back to work come January. Where I got this idea? No clue. Sure my headache was gone week 5 and I was able to walk around and be myself week 6. That's what "recovery time" is. It is not 4-6 weeks and you are seizure free. It takes time to figure things out and for your brain to settle down. Especially with this new RNS technology implant. They are still learning about it.
I went 25 days without a seizure, cut my dose of the bad medicine in half, had a seizure with the change, and just hit 10 days seizure free yesterday. I contacted my doctor asking what my next step is. Can I go back to work? Is it time to drop the medicine? What's my next step? She reminded me of our goal, but we need to play it safe. Knowing this can take more time than I expected is hard to accept. I'm anxious to go back to work, but more importantly I'm anxious to be seizure free. My doctor put the decision of returning to work in my hands and will support me with the choice I make. All I wanted was a straight answer, but she is not me. She doesn't know my work situation. She doesn't know others' reactions to a seizure where I work. The thoughts in my head started brewing. I thanked her for her help and told her I need to take a bit of time to think about this.
I hung up, explained it to my mom and my stress level of making such a big decision started to increase. A minute later, the aura comes on as we are getting out of the car. The next thing I know I am upstairs on my sister's bed.
It's time to make a decision.
Hopes for the Future:
Meet my goal.