simple partial, does anyone else in the whole world have it?!?!?!?!?

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i'm 12 1/2, diagnosed w/ epilepsy about 2 1/2 years ago, and i can't stand it!!! when i was in 4th and 5th grade, i was o.k. i didn't care. but now that i want to do riskier things (surfing, scuba diving) it's a LOT harder. whenever i read about epilepsy, it's about people who have 200 absent seizures a day, grand mal seizures, and all of these operations. i know it's hard on them, REALLY hard, but it can be hard on me, too. i have NEVER heard of someone who has simple partial, and so i feel so different and set apart. i was sobbing this morning because i thought i might not be able to go to surf camp (i was really looking forward to it!) because of my condition, but my mom called my doctor and he said it was o.k., but i should wear a life-vest! i would be the only 1!!!! i don't want to be different! i want to fit in! it's already hard enough when people ask me why i take pills (trileptal, 300mg twice a day). i want to know if there is some one out there like me, waiting for someone who understands. my friends CLAIM they understand, and so does my mom, but they don't, they just DON'T!!! i need to know!!and if you have it, please reply! and just to help, you can still do fun stuff! i got to go tandom paragliding, so life will get better.

Comments

RE: simple partial, does anyone else in the whole world have it?

Submitted by maggie on Fri, 2005-07-01 - 21:16

Hi, Just read your post and I felt so sorry for you.It must be hard to go through this and be so young.I'm 51 and was just diagnosed with epilepsy.I have about 4-6 seizures a day.Doc put me on Tegretol 300mg 2x day.It seems to be working for me.I DO know where you are coming from.I'm on leave from my job,can't drive,can't swim etc. You are no different than anyone else. This will get better for you.You have to have faith that God will see you through each day...it will happen.He will not let you down.Keep doing research and learn as much as you can.You'll find that there are others that have it alot worse than us.Thank God you can go to surf camp so what if you have to wear a life jacket,some kids are not even able to go.I also cry sometimes,that's normal and so are you.No-one REALLY understands unless you have it.I will pray for you.Try going to this web site,it's great and it might just make you feel better. www.inspirationallivingonline.com good luck and I hope you have a great time at camp!!!!Lol

RE: RE: simple partial, does anyone else in the whole world have

Submitted by pineapplebeach9 on Sat, 2005-07-02 - 11:16

thank you for the support! i feel better when i can hear from someone who can write from their heart and experiance. and my medication is working fantasticly for me! since i started in 4th grade, i haven't had a single seizure, so i can start discontinueing my pills half a pill a month until i'm pill and seizure free! i hope that eventually the same will happen to you! i'm pretty lucky i can do most things, like surfing, and my mom even let me go tandom paragliding when we were in germany a couple of weeks ago!! and i hope you will be able to enjoy life as much as it seems you do, and keep posting, so other people can have support!T H A N K Y O U ! ! ! ! ! ! :-)

RE: RE: RE: simple partial, does anyone else in the whole world

Submitted by dayna on Sat, 2005-07-02 - 12:10

You have already won half the battle. You have a great spirit, and that will help you get through the rough times.

I remember the summer before jr high we moved to a new City and I had to leave all of my friends. I met a couple girls in the new neighborhood, but they were not in any of my classes. Talk about scary! I am happy to say I met a great group of girls that are still my friends.

I am glad to hear you get to reduce your meds, that is fantastic. I hope you have a terrific time at camp. Please remember to get as much sleep as you can. LOL Like anyone really sleeps much at camp. It is important though to keep the seizures from triggering. Be Safe and Have Fun!