Category Archives: Epilepsy

Epilepsy

A better frame of mind…

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I find myself in a better frame of mind.

My doc seems to see no problem whatsoever in me having more children, though I will absolutely not be taken off the meds at all, period, ever. Apparently the risk of birth defect caused by seizure is significantly higher than the risk caused by medication. Hmm. I guess we have some thinking to do.

I also have had a chance to slow down my ramp up and adjust a little bit to my medication, even though slowing down has resulted in two straight days of seizures in my left hand. They are very minute now, and feel rather like a muscle spasm, so I can handle them much better than I used to, though they are currently accompanied by that fluttering facial twitching which wears my face muscles out and freaks my soul out a bit. Ok, a lot. Still, I am less tired, and other than today have been generally feeling better.

The best news, I rediscovered a friend. I went to a drum circle on Saturday with a long time friend and while I was hiding on the fringe of the circle with her, wondering if I should stay there in the rain or hide near the bonfire and warm up, I saw the silhouette of a friend from long ago. I snuck up behind him and placed my hands over his eyes, like I had done a million times before in a prior life. When he spun around and recognized me it was like a homecoming. Best of all, he has Epilepsy, has dealt with it for thirty-three years, and has already spent hours this weekend talking me through this diagnosis. I feel as though my feet have found solid ground to stand on again. He has promised that I can call him anytime with concerns and questions. I feel so much better just having someone I know and trust to talk to about all this, someone who actually knows what the fuck it feels like, and someone who knows me well enough to ask me embarassing questions and answer the same with complete honesty and aplomb.

So this weekend has been a good one, and ends with me in a better frame of mind. I have a new strong hand guiding mine as I find my way through this maze, and am feeling blessed.

Epilepsy, Just me

Dragging Ass…

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My medication’s most prominent side effect this week is an overwhelming need to sleep. This has been compounded by the mini-dictator’s sudden need to arise and begin conquering the world between 5:30 and 6:00 a.m. Sometimes, life and parenthood do not mix well, like high heels and tapered jeans. (Sorry y’all, this look will never not be tacky.)

I saw my doctor on Wednesday and she seems to think I am likely to adjust out of the “semi-comatose” phase I am currently in, get less distracted, and regain my appetite. However, my intense, sudden, and continued weight loss has gotten her to slow down my medicine ramp up, so I am still only half way to my expected dose. I will remain here until the sense of needing to sleep all fucking day goes away and I can start adding more pills again.

While waiting for my appointment I found a pamphlet from the Epilepsy Foundation on the table by my chair. I picked it up and was instantly struck by it’s heading. “You are not an Epileptic! You are a person with Epilepsy.” It shouted at me, clearly attempting to reassure me that my life was not about to completely change now that I had this … well… life changing diagnosis. (All righty Mr. cheerfully bright yellow pamphlet… I’ve got some time to kill… let’s see what you’ve got to say.)

Intrigued, I opened the pamphlet and began to read. The first two thirds were a very informative discussion about the wide range of variances between epileptic diagnoses, the differing treatments for them, and a fairly comprehensive examination of the Americans with Disabilities Act and the Family Medical Leave Act. The overall theme remained clear though, as a Person with Epilepsy, I can still work, play, run, lead a healthy, normal life, etc. I just have to make a few minor adjustments to my new, state shall we say, and I will be off and running again.

Then, just when I was feeling cheered and starting to relax a little, I got to the safety portion of the pamphlet. Not too surprisingly, here there wasn’t any header about being a person with Epilepsy instead of being an Epileptic, no here there was a lot of emphasis about having your floors carpeted in extra deep pile with added padding and “looking for rounded corners when shopping for furniture”. There was even a section on what to do if you need to wear a helmet at work.

After spending two thirds of the pamphlet assuring me that the my life would change only minimally as a result of my diagnosis, this cheerful bright yellow pamphlet was now urging me to replace my brand new, first ever set of designer ceramic dinnerware, (You know, my fucking post college, adult dishes that I finally bought last year and picked out all by myself) with plastic plates and cups to minimize cuts in the event of a seizure. Technically, I am not even supposed to be cooking with the stove, as the safest route for me would be to cook solely in the microwave.

It went further to suggest I use a cart to take dinner from the kitchen to the dining room, to insure that I avoid any dangerous episodes a “person with epilepsy” might have while transferring hot food to and from the kitchen. A cart, as in, at the Dim Sum restaurant cart, or the middle school cafeteria cart!

I won’t even go into the bathroom safety, except to say we will be rehanging the doors, so they open outward.

I have a small chance of having the kind of seizure these precautions are meant to protect against, but not such a small chance that my doctor has cleared me for bath taking alone. She even lectured me on how dangerous bathrooms are for Epileptics. Apparently this is my new life, I take these medications, hope they prevent these types of seizures, and then carpet my house in really deep pile. Suddenly I am looking at my house the same way I did when Otter and Monkey started crawling and walking.

If I ever develop petit and grand mal seizures, will I fall and bump my head on that? Could that hurt or kill me? Should I get rid of it and replace it with something less potentially harmful? Do I need to gate off the fireplace?

Am I, at 33, seriously babyproofing my house for myself?!