It's not a myth! Other people ACTUALLY have seizures too!

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Starfish

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This is the first time for me posting on a site like this. I have always know that there are millions of people out there with epilepsy but somehow I"ve only met one. I think it is time to fix that.

My name is Krista, but my friends call me Starfish. I like being called Starfish because somehow EVERYONE manages to mess up my name. I don't know how but it happens. Starfish is much harder to mess up don't you think?

I have photosensitive epilepsy. I'm 15. I'm in high school, and an honors student. I never ask for an extension on anything because of my epilepsy or having seizures, it jsut feels wrong to ask.
I am a member of FFA.
I have pet bunnies.
I play piano.
I can speak Spanish. (much easier to speak in Spanish when you have food in your mouth by the way, just saying.)
I water ski.
I fold origami.
I sometimes do math for fun....

I found out I was epileptic in 4th grade. But I started having seizures in middle school. Middle school was a very bad time for me. I cannot see strobe lights, flash photography, fire, I can't walk into some places at school because they florecent lights flicker too much.

When ever I try to tell people about my epilepsy they think it's so strange really rare phenominom (I think I spelt that wrong) and that I"m probably the only epileptic they'll ever meet. I judge how well I can trust a person with how they deal with my epilepsy. I love it when people ask about my epilepsy because it shows they care. I'm always talking about it because I don't want people to be scared to ask. Most of the seizure's I've ever had have been in school, so I make sure everyone I'm frequently around knows. If they can't deal with it, they can't deal with me. I've lost a lot of "friends" because they just couldn't deal with it, which is very disheartening.

Welcome to my life. :)
 
Hi Krista, welcome to CWE!

I hope you feel free to explore all the forums and threads here. Lots of good stuff to check out, and great members to meet.

Best,
Nakamova
 
I know when I tell people I have epilepsy they think - Oh my god, any minute now I'm going to fall to the floor, shaking like crazy, drooling and screaming like I've been posesed by the devil!!!!! People don't realize it's not like that.

Yes we do lead normal lives, some times have to watch out when doing things like strobe lights and some of the other things like that you've mentioned. But otherwise we're normal people too. I'll tell people some of the things that I do in my spare time and they can't believe that I'm able to do that with having epilepsy. I don't know if people think that we are just locked up in a room all the time waiting for the next seizure to come on.

I've lost a good bit of friends too. I don't know if it's because I can't drive and it's hard for us to get together or if they are afraid of the seizures. In the end you find out who your real friends are, they aren't afraid of you, they know you.

This is a great site. You'll get alot of questions answered because there are alot of people that deal with alot of the same things that are going on with you. You'll beable to answer alot of questions too.

Glad to have you around!
 
Welcome to the forum!
My name is Krista, too. :oD Is it becoming a more popular name now? When I was growing up I knew one Crista, and that was it. But recently I see it a little more often (I'm 30, so I'm twice your age. lol).
I think I know what you mean about everyone messing up your name. People always want to call me Christine, or Kristin, or Christina. I'll introduce myself, and they'll be like,
"Christine?"
"No, KristA."
"Huh? Kristin?"
"No. K-r-i-s-t-A"
"Oh, Krista!"
"Yeah."
Anyway, when I was in high school I tried to hide my epilepsy from everyone. I don't think I even told my best friends. One time I was limping in the hallway at school because I was having a simple-partial seizure and my right leg was shaking/twitching, and my teacher saw me and asked me why I was limping, and I was like, "Well, umm.. It's like, this thing I get sometimes..." LOL he was like, "Okayyy...?"
So that's really great that you talk about it in school. A lot of people have misconceptions about Epilepsy (I know I did before I knew I had it!), so you're being open about it helps get rid of some of those misconceptions.
I like that you do math for fun. hehe. I like algebra, but anything more advanced... ack.
Well, welcome again! I hope you enjoy yourself here at CWE!
 
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Starfish said:
If they can't deal with it, they can't deal with me.
Click to expand...

:agree:

Good attitude girl!! I couldn't agree more, it definately indicates who's worth keeping around. WELCOME to the forum, you'll love making friends here.
 
valeriedl said:
I don't know if people think that we are just locked up in a room all the time waiting for the next seizure to come on.
Click to expand...

My school pulls me out of the fire drills becasue they have strobe lights on them. So they always call me down. Last year there was a rumor going around that they would lock me in a closet durring fire drills so I wouldn't hurt myself. I quickly went about talking to people and making sure if they wanted to know ANYTHING to just ask me. If something REALLY happened I would not want to be locked in a closet durring a seizure.
 
Hi Starfish,

Welcome to our party,

I hope you find everyone her as friendly as I did.
 
Welcome Starfish. Given the fact that 3 percent of the population has epilepsy, that leaves a VAST majority of 97% w/out seizures. So, it does make each of us unique in our own right as well as within the boundaries of each type of epilepsy itself.
It's great that you are reaching out to other people so they understand photogenic epilepsy. They are accommodating it which does offer some support system for you.
Funny...I have a lot of the same interests as you ('cept I cannot speak Spanish at all!)
 
I speak spanish at home because it's my mother's first language. but in school they make me take oregin language even though I already know it. It needs documentation but It's an easy A and all my friends are in the class so.
 
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