BlueSkies2220
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Greetings!
I'm new here - but not new to Epilepsy. Its a condition that I have dealt with all my life. Many people who know me do not know that I suffer with this condition, but the ones in my life who do accept me as a close friend and confidant. I'm sure that you all know how prejudiced people can be at times, treating us like we were totally diseased. Yep. Im that girl with epilepsy.
For me this journey started out in grade school. I would sit in class...and feel 'funny' - i would excuse myself and go to the bathroom while I felt that I was on a roller coaster! I told my mother that I had feelings of 'deja vu' - and she told me 'its growing pains, youll grow out of it' - yeah right. Maybe she didnt want to spend the money for medicine or she didn't want to believe that her daughter had this condition. When I was a baby I had a seizure, tonic clonic.
Time passed on and there were years when it didn't bother me at all...and then sometimes there were years where it would happen to me often. So it was unpredictable.
When in my late teens, it progressed into complex partials. I would pass out or feel very tired after my aura. It would make me want to throw up. I never got help for my condition until I had my first grand-mal seizure - when my head hit the pavement outside of my house and I didn't even remember walking outside or falling down.
That year, I had several grand mal seizures. I became a regular at the hospital, they knew me by name. They tested me the last time that I was there - even doing a spinal tap on me. Perhaps, suspecting that I was using drugs.
I felt that stress was a huge contributing factor. I was in a bad relationship where the person that I was with was very emotionally abusive. When I left that relationship and went out on my own, things got better for me. But it wasn't until I got on the computer and found out that all my life, those feelings of deja vu were actually seizures.
I couldn't afford a doctor. life was hard for me, and I ended up having seizures at work. My boss wanted to fire me - i know. but he couldnt' fearing the 'disability act' -
I worked as a dancer for many years. Its what helped me to escape that bad relationship and to build my new life but as time went on, i became 'that girl with seizures' - so it was hard to make money with all the whispers around me. It's hard enough being in an industry where you don't make a regular paycheck and your entire income is based on how happy you can portray yourself to be, how fun you are and how you can talk your customers into spending money. Dancing is 99% sales and 1% dancing!
So anyway, I eventually married and settled down. My husband is very caring and kind - and I gave up my license for two years after a frightening incident where I couldn't even remember my husband's name when the paramedics showed up at work.
Not being able to afford medical care - i went online and found the right medicine to treat my condition. I fought long and hard to not take it, since I didn't want to accept that Epilepsy would be my life from then on.. but I found the right medicine, ordered it, and started taking it, and six years later, I am seizure free. I had went from having a seizure per week to none at all, and it feels great. I get my medicine online and I take the lowest possible dose with little side effects [dilantin that they gave me in the ER gave me a horrible rash! and i told them this and they said 'well its the only thing we can give you' - YEAH RIGHT!]
After two years, I went and renewed my license. It feels great to not have these attacks anymore...but I know that a breakthrough is possible at any time if I don't take my medicine. I know that self medicating is probably not a good idea but what can you do when you are jobless, no insurance, no income to see a doctor weekly...these things are expensive. My husband is dealing with diabetic neuropathy and is seeking disability so he can't afford to pay for my medicine either. His insurance would refuse my care if they knew that I have epilepsy.
Please don't berate me for not being able to afford my medical care and for researching my own condition and self-medicating. I can't afford the nearly 400$ a month for doctors and medication, they wont give me medicaid and local clinics won't treat my condition since i've never been 'diagnosed' officially. Like i could afford to stay in an ep. treatment center anyway..who's got thousands of dollars to throw away? I certainly don't - I owe over 70,000$ to the local hospitals, anyway for ambulance rides and stays in the ER from years ago all for them to test me there and tell me that its 'idiopathic'.
I'll just be glad for every day that I'm alive. And I will continue on. And, i dont mind being here sharing my story with others who also have to deal with this condition.
After all of this the most crippling thing to me is my low tolerance to noise and stress, and my forgetful nature. I have to write things down just to remember them, even the simplest things. I will forget what I wanted to do five minutes ago or forget the name of someone that I have known for years. Its embarrassing but thats how it goes.
Glad to have a place where we can have support.
I'm new here - but not new to Epilepsy. Its a condition that I have dealt with all my life. Many people who know me do not know that I suffer with this condition, but the ones in my life who do accept me as a close friend and confidant. I'm sure that you all know how prejudiced people can be at times, treating us like we were totally diseased. Yep. Im that girl with epilepsy.
For me this journey started out in grade school. I would sit in class...and feel 'funny' - i would excuse myself and go to the bathroom while I felt that I was on a roller coaster! I told my mother that I had feelings of 'deja vu' - and she told me 'its growing pains, youll grow out of it' - yeah right. Maybe she didnt want to spend the money for medicine or she didn't want to believe that her daughter had this condition. When I was a baby I had a seizure, tonic clonic.
Time passed on and there were years when it didn't bother me at all...and then sometimes there were years where it would happen to me often. So it was unpredictable.
When in my late teens, it progressed into complex partials. I would pass out or feel very tired after my aura. It would make me want to throw up. I never got help for my condition until I had my first grand-mal seizure - when my head hit the pavement outside of my house and I didn't even remember walking outside or falling down.
That year, I had several grand mal seizures. I became a regular at the hospital, they knew me by name. They tested me the last time that I was there - even doing a spinal tap on me. Perhaps, suspecting that I was using drugs.
I felt that stress was a huge contributing factor. I was in a bad relationship where the person that I was with was very emotionally abusive. When I left that relationship and went out on my own, things got better for me. But it wasn't until I got on the computer and found out that all my life, those feelings of deja vu were actually seizures.
I couldn't afford a doctor. life was hard for me, and I ended up having seizures at work. My boss wanted to fire me - i know. but he couldnt' fearing the 'disability act' -
I worked as a dancer for many years. Its what helped me to escape that bad relationship and to build my new life but as time went on, i became 'that girl with seizures' - so it was hard to make money with all the whispers around me. It's hard enough being in an industry where you don't make a regular paycheck and your entire income is based on how happy you can portray yourself to be, how fun you are and how you can talk your customers into spending money. Dancing is 99% sales and 1% dancing!
So anyway, I eventually married and settled down. My husband is very caring and kind - and I gave up my license for two years after a frightening incident where I couldn't even remember my husband's name when the paramedics showed up at work.
Not being able to afford medical care - i went online and found the right medicine to treat my condition. I fought long and hard to not take it, since I didn't want to accept that Epilepsy would be my life from then on.. but I found the right medicine, ordered it, and started taking it, and six years later, I am seizure free. I had went from having a seizure per week to none at all, and it feels great. I get my medicine online and I take the lowest possible dose with little side effects [dilantin that they gave me in the ER gave me a horrible rash! and i told them this and they said 'well its the only thing we can give you' - YEAH RIGHT!]
After two years, I went and renewed my license. It feels great to not have these attacks anymore...but I know that a breakthrough is possible at any time if I don't take my medicine. I know that self medicating is probably not a good idea but what can you do when you are jobless, no insurance, no income to see a doctor weekly...these things are expensive. My husband is dealing with diabetic neuropathy and is seeking disability so he can't afford to pay for my medicine either. His insurance would refuse my care if they knew that I have epilepsy.
Please don't berate me for not being able to afford my medical care and for researching my own condition and self-medicating. I can't afford the nearly 400$ a month for doctors and medication, they wont give me medicaid and local clinics won't treat my condition since i've never been 'diagnosed' officially. Like i could afford to stay in an ep. treatment center anyway..who's got thousands of dollars to throw away? I certainly don't - I owe over 70,000$ to the local hospitals, anyway for ambulance rides and stays in the ER from years ago all for them to test me there and tell me that its 'idiopathic'.
I'll just be glad for every day that I'm alive. And I will continue on. And, i dont mind being here sharing my story with others who also have to deal with this condition.
After all of this the most crippling thing to me is my low tolerance to noise and stress, and my forgetful nature. I have to write things down just to remember them, even the simplest things. I will forget what I wanted to do five minutes ago or forget the name of someone that I have known for years. Its embarrassing but thats how it goes.
Glad to have a place where we can have support.
onder: