Pretending to be “Normal”

 

Epilepsy is a funny thing. I can go weeks without an “episode.” I love those times. It’s when I feel most normal, like I can do anything, like I’m just like the woman standing beside me at the grocery store (except that she probably drove herself there – I can’t drive…thanks epilepsy).

And then it only takes a 30 second “episode” to change all that.

My confidence (and my brain) gets shaken, and I suddenly get that apprehensive feeling that hangs over me like a dark cloud. When I was little, before I was diagnosed, I used to tell me mom that it was “going to be a bad day.” Neither one of us knew why I said it, I just had this feeling of doom that hung around.

Fast forward some 35+ years later, and I know exactly what I was getting at: the anxiety that accompanies seizures.

It was so much easier when I was younger and fearless. But as you get older, you get wiser, more cautious…almost to a fault.

Every time I have a seizure, it sets my confidence back a step. And depending on how strong the seizure, it sets my confidence back A LOT of steps.

It makes me question my independence: Should I go places alone? Should I take public transportation alone? Should I even try to cross the street alone?

I will always be the “weird girl in the corner,” I’ve gotten used to that. But I hate that my kids are now old enough to see me as the weird girl in the corner.

It’s hard to portray confidence, and show them that they need to work through their challenges whatever they may be, when some days I don’t even believe it myself.

Life will always through curve balls that you may not be prepared for, you just need to decide if you’re going to swing or duck. Today I feel like ducking.

I just want my confidence back. Tomorrow’s another day. Maybe it will be a good one. It certainly will never be a “normal” one.

Thanks for listening. I wish I had some grand epiphany to share, about how I’ve learned something wonderful from having epilepsy, but today my brain is tired. Today epilepsy sucks.

My Epilepsy Experience and being your own advocate

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First, some history. I’ve had epilepsy (absence seizures) all of my life, we think. I say “we think” because ever since I can remember, I have experienced the Auras that go along with my type of epilepsy. In short, we never knew there was a “problem” because when I was young, I would tell my mom that I felt weird, but I could never really explain what I was feeling, and she never saw any outward symptoms. When I was about 19 years old, I had an episode while I was driving and drove off the road and into the bushes on the side of the road. That’s when the whole adventure to diagnosis started.

The doctors figure that the disorder started when I was only an infant. At 6 months old, I got meningitis, with an extremely high fever, and the doctors have assumed that there is probably some scar tissue on the brain that is causing the seizures, though none has ever shown up on an MRI (the scar tissue, not the brain – LOL).

I’m 47 now, and have been through a slew of neurologists They aren’t my favorite doctors for a myriad of reasons, but mostly because they hand you a pill and don’t listen to your ideas.

But I know my body. I know what makes it tick. And without doing my own research and fighting for what I believe in, I would still be taking exactly what they tell me, and having minimal results.

I used to have seizures every month, like clockwork around ovulation until after my period. And I was told by the neurologist (usually a man) that “everything is worse at that time.” Yeah, but why?! But I listened and stayed away from birth control pills because the neurologist said it could interfere with my medication.

Until recently. I started experiencing symptoms of peri-menopause with off and on periods and heavier than normal flow. So, once I again, I started researching. There’s a type of epilepsy called Catamenial epilepsy in which women’s seizures are exacerbated during their menstrual cycles.

I approached my neurologist who sort of dismissed the idea, so I went to my gynecologist instead. The Nurse Practitioner I saw listened to me and put me on a progesterone birth control pill. The seizures stopped immediately! No kidding! For 4 months I was seizure-free. That was the longest I’d ever been without a seizure since I was diagnosed and started keeping track. I had a few breakthrough seizures when the pharmacy filled a different brand name pill for me. I know there isn’t supposed to be a difference, but I fought to get the same brand I had before, and it worked again.

Also, thanks to Peri-Menopause, I started experiencing night sweats. I read that Magnesium will help with those. And it does, sort of. This last weekend I was sick with some sort of intestinal thing, so I backed off of the Magnesium. Within two days I was having seizures again.

So I started researching, and it turns out that people with epilepsy are sometimes Magnesium deficient. What?! No doctor ever told me that. I went back on the Magnesium and the seizures stopped the next day!

So why am I telling you all of this? Because I want you to know that you HAVE to be your own advocate. YOU HAVE TO!

All this being said, I’m not advocating going off your meds. Don’t be reckless or careless and endanger your well-being. I still take my medication, because I think it probably works a little, though I can’t really prove it. But I’m not willing to go off of it simply because I don’t want to stir up the calm waters that I’ve fought so hard to find. But I seem to have found the right combination of meds and minerals to help my particular situation. And who knows? It may change again.

Talk to your doctor. If he or she won’t listen, find another who will. Be your own advocate, no matter what your situation. Sometimes we have to fight for our healthcare. We shouldn’t, but we do.

We deserve to live the very best life we can. We deserve to be healthy, whatever that means for you. Have you ever had to fight for your healthcare? What did you experience?

 

*I am not in the medical profession. This is my unique experience. I am not dispensing medical advice. The above post should only be taken as my opinion.