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Old 07-06-2004, 06:59 PM   #1
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julie ann HB User
Unhappy this is hard to live w/

hey im 24/female and i have had these seizers all my life. and i cant drive, i cant be by myself and im scared to be alone. i have to have somebody take me somewhere if i want to go. i cant work cause what if i have one at work and hurt someone. Im takin trileptal 300mg 3xs a day. i get the mostly around my period time about 4 or 5 of them. i just hate not being able to do things for my self. i have no friends cause it is hard to make them if u cant do anything. so i thought i could talk to ppl on here and make somefriends.

 
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Old 07-06-2004, 09:47 PM   #2
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Lisa T HB User
Smile Re: this is hard to live w/

Well first off... Welcome, welcome, welcome.. you will find lots of buddies here. And feel free to ask any questions you have, generally someone has experienced something similiar!

I have learned many things about myself since my first seizure almost three years ago...(bare with me) ... and one of the most important things is not to let this rule your life. Maybe I'm mistaken, but just from the paragragh you typed it sounded like you let E rule it. Am I correct? How frequent are your seizures?

I do not mean to lecture... its just... yes E is a challenge, but life is worth that challenge!! Hang in there sweetie and welcome to the board yet again!!

Lisa
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Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!

 
Old 07-06-2004, 11:09 PM   #3
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tkdmom96 HB User
Re: this is hard to live w/

Hi Julie Ann & Welcome!

Lisa T is a wonderful board member to look up to! Our daughter is 16 and has had E since she was diagnosed at the age of 9 months.

One thing I have always taught her is to keep her head up and we'll do the best that we can to take care of her. Sure, we had our ups and downs, but she never looked at E as being the end of a "normal" life. Everyone's "normal" is different. She has also had exposure to other children over the years, in our neuro clinic, that had more serious issues to deal with. People with Cerebral Palsey, dibilitating migraines, Muscular Distrophy, Craniofacial, etc. That always helped her keep things in perspective and not have a distorted view of life.

We never allowed Katie to be treated any differently either. She took swim lessons, was on a swim team, is working on her 2nd Degree Black Belt in Tae Twon Do (had her Black Belt at the age of 12), played softball from 3rd grade through 8th grade (and was a very good pitcher and second baseperson), has ridden roller coasters at Six Flags (ones that I must say I didn't care for, but she went on them with dad, and they are coaster freaks) and Disney World, been to water parks, has driven a ton of go-carts, and even went on a class trip to Rome for 13 days in 2003...talk about letting go, alot of meds to send for that long! The first trip couldn't have been to Florida or something! Never any different than anyone else. Many people didn't even realize she had E until we were in a situation where we had to share the info, which is the right thing to do. And at some of these times she was taking meds three times a day as well.

I'm just making the point that life is what you make it. You are a young woman with a lot of life to live yet. Are you able to volunteer? Many places can send someone to pick you up. Or are you near a bus stop? Bus drivers are trained to deal with these type of situations because many people with disabilities or the lack of being able to have a license, have to use the public transportation. You may find great satisfaction in doing volunteer work. At a hospital, nursing home, animal shelter, medical clinic, library, Red Cross, Blood Center etc. Just make some calls, they would love your help!

Do you exercise or get out for a walk in the sunshine? Fresh air and sunshine do wonders. Listen to relaxing music, not music that is full of garbage. That only adds more stress. Music that is uplifting to you.

What type of seizures do you have? Have you looked into asking about the Depro Provera shots that some women on the boards here are taking, with great success. Read some of the info on the last few pages of the thread titled "Seizures Around Your Period...", it is showing now on this first page.

Come back anytime and keep your chin up,

Vicki
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Old 07-07-2004, 02:35 PM   #4
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Art_930 HB User
Re: this is hard to live w/

Welcome to the board, Julie Ann. Call me Polyanna, but I'm thinking that if you have 4-5 seizures a month, and they're around your period, how about the other 3 weeks of your life every month? Please don't let something like this define you.

 
Old 07-08-2004, 02:45 PM   #5
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heavenangel24 HB User
Talking Re: this is hard to live w/

Living with seizures is hard. Taking medicine every day is hard. I take topomax and tegretol xr. My seizures are controlled thank goodness.
You just have to live your life the best you can.

 
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