That's what I am doing right now.
I have been admitted into the hospital for a week of testing. "Testing" is what I am calling it. It's actually, called a video EEG. It's been planned about three months in advance, and I was quite tempted to cancel it.
...I'm fine. I will be fine. I need to be at work. I probably don't even have epilepsy... That's what I was telling myself.
False. I have learned that I am not "fine". lululemon will survive with my short absence, and as much as I have enjoyed denial, my very well respected neurologist insists that I do indeed have Epilepsy and it needs to be taken more seriously. With more recent seizures, and a growing fear of what those seizures might indicate, I am pretty happy I kept my appointment.
What's happening now is that I have (what feels like) a million electrodes glued to my head, I have an iv stuck in my arm, a doo dad on my finger, and half dozen wires stuck around my torso. Oh, and I also have two cameras filming me with specialists watching the film on a live feed. Ugh. Just watching. Watching, and waiting, and hoping that I have a seizure sooner rather than later so they can capture it all on various types of film, analyze it, compare it with my prior eeg's, my ekg's, my blood tests, mri's, etc and figure out why my meds aren't working. From there, they'll come up with a new solution, one that is effective and can even possibly grant me some freedoms- driving would be lovely.
It could be worse, absolutely. I have a tv and wifi (neither of which we have at home), and I am allowed all the caffeine I can drink with possibilities of champagne in the days coming... If it means it might bring the seizures on sooner rather than later, I say pop the bubbly!
It could also be better, for sure. I wouldn't have a barrage of beeping everytime I unplug my heart thing to go pee. I wouldn't be sore from the digging needles, I wouldn't have to be on sleep deprivation, and I wouldn't be scared of what's gonna happen tomorrow when my meds are cut off. Am I going to feel it coming? Will I have a huge chunk of my tongue bit off after? Is Lucas going to have to see me in my full convulsions? Are the doctors going to find the answers they're looking for? And the biggest question- do I want to know those answers?
All these thoughts are flying through my head right now. In addition, I feel incredibly, painfully vulnerable talking about it. It's uncomfortable. I don't know what to say. No one knows what to say. There is nothing to be said. I don't like sympathy and I refuse pity. I am strong. I am able. I am confident. (I keep telling myself). I dare to share this because it is my way of bringing awareness. November is epilepsy awareness month and if I can't share it now, when can I?
So I share. Little by little, I will keep the postings coming, and I will do what I can.
I can breathe, smile, and trust. I will keep drinking my coffee. I will also keep kissing and loving this incredible partner that I have who is willing to cram into this bed next to me and be my partner through it all. More than the fear, the worry, the uncertainty, I feel gratitude. I trust.
