It's been over 10 years since my first seizure, and I'm just now starting to get comfortable talking about it. Saying the words "seizure" and "epilepsy" in relation to myself still sound weird. That first day back to school after being taken out of my home in an ambulance at age 17 were weird for everyone. Just like Chandler Bing, I handled it with jokes. To explain it to people, I told them my grand mal seizure was the type where you "flopped around on the floor," which was not at all what happened--it was a grand mal, but it happened in bed, which is where every single one has happened since.
I should have explained it then, but I felt like no one wanted to know, and I was a little embarassed. Since tomorrow is Purple Day for Epilepsy Awareness, I'm going to break it down for you here. I'm also wearing purple, and inviting you too as well. If you're on twitter or instagram, I'd LOVE it if you took a picture of your purple and used the hashtag #purpleformel so I can put them in another post.
What's a Typical Day Like for me?
Because I'm in the process of titrating (tapering) up to a new medication and finding the right dosage, I have to be sure never to miss a dose. As soon as we figure out what the right dose is of my new medication (Lamictal ER) is, I can start titrating down and finally quit taking Topamax.
When my husband travels, we have a deal that we start every day with a text message that I am awake and safe by 7:30. On the rare day that I sleep in, things like this happen, and I accidentally scare him.
|No worries, everything was okay!|
To be honest, I don't know. When I switched doctors last year, Brandon had to write down a long description of what they looked like, how long they lasted, etc. for me to give to her. According to him, they are 60-90 seconds long. I have no recollection. Ever. I always wake up with a swollen tongue from biting it, and red and purple spots all around my eyes from busted blood vessels. This almost always causes me to lose the entire day due to severe muscle aches, headache, and overall fatigue.
When was your last seizure?
October, when I was still getting used to my new medication regimen.
Have you had to change much about your life?
I can still drive. I can participate in strenuous exercise if I want. Flashing lights and rollercoasters don't affect me, but stress and extreme fatigue do--if anything I've realized I need to take much better care of myself.
I have two healthy kids, but I paid for it during my pregnancies. I made the decision to get my tubes tied at the age of 24 because I felt anymore high risk, high stress pregnancies would be irresponsible. That's not my choice to make for anyone else, but it's the choice I made for myself.
I am extremely lucky. For having a "chronic disease," I feel like the healthiest person out there.