I’m still here…I know that I haven’t posted in months. Here’s why:
Having a seizure disorder sucks. I never know when I may drop from a Grand Mal, and I have daily aura seizures that I have to function through as though nothing is happening. Over the past 20 years I’ve gotten really good at continuing whatever activity I’m doing when an aura hits – I regulate my breathing and no one but close family knows when I’m having an aura. If I’ve ever spoken with you and seemed a little weird for a few moments then I was having an aura seizure and concentrating on appearing normal.
In stressful moments auras hit fast and hard, and they’re painful. Usually my left arm and hand burn from the inside – like an adrenaline rush combined with a chemical burn. Sometimes the seizure is in my throat and then I can’t speak until it’s finished or I’ll sound like I have bubbles in my throat. The worst ones are those that affect my left jaw and make me feel like I have stabbing pain radiating from my left temple.
Now that I live in a new smaller city – Vernon, and not the big city – Vancouver, I thought that maybe I should start taking meds so eventually I can drive…which I’ve never done. I’ve avoided meds entirely because I don’t want to put anything into my body that isn’t natural. My thought now is that perhaps I can sleep deeper if my seizures are halted by meds, and my daughters’ minds can be put at ease if the potential for Mom to seize in public can be prevented.
I’ve given up my UBC Neurologist and now have a local Neurologist who is helping me to find the med that works best for me – I need to function at my usual level without the fogginess and lethargy that some of the meds induce. So now after a few months I’ve tried 2 different meds with a whole pile of side affects that I refuse to live with…. My question to myself is, “Do I try a third?” My Neurologist told me months ago that a person is considered immune to anti-seizure medication if 2 medications don’t work. Maybe I’m superhuman….
In the first days of March I had an MRI so my new Neurologist could compare the current scan with my previous one from 15 years ago. When I was in the MRI machine the nurses pulled me out and said that the doctor overseeing the MRI saw a lump on my brain. They injected something into my arm and put me back in. Then I went home to ponder that for two weeks while my Neurologist was away. My 39th birthday came and went during that time and I didn’t know what to think so I mentally prepared for whatever the doctor was going to tell me.
So I decided that whether or not I had a brain tumor I was going to make some changes. Here’s my list:
* I’ll speak up when I may normally remain quiet
* I’ll blast music when I feel like it instead of listening to it quietly when everyone goes to bed
* I’ll sit back for a bit before jumping in as a parent
* I’ll take time to read books and tell the kids that it’s my time to relax
* I’ll say “no” to doing things that I really don’t want to do (unless someone needs my help)
My Neurologist called me and said that the lump is nothing to be concerned about and it’s the same spot that has been causing my seizures the whole time. Nothing dramatic. Life continues on as per usual. Except for my list – I’m sticking to it. Currently Stone Temple Pilots are blasting as I write…Interstate Love Song….