Your hope, your life, your dreams

finalpoet

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Anytime I hear somebody talk about epilepsy it's extremely negative. On a different forum a person said "epilepsy ruined my hope, my life, my dreams." Don't get me wrong I see very little positive about our condition. I have to make shit up when I post in the Lemonade Stand. But do you really see it as that bad? I mean now I can't get a well paying job and my dream job, I'm hoping to get my second favorite job. I've been in a wheelchair for over three years and I hope to walk with a cane by the end of it all. Often times I'm certain I'm out of a relationship because of my lengthy recovery caused by epilepsy. I have a number of other problems I won't get into, but do you really see it as that bad? I don't feel like epilepsy ruined my life. I don't know maybe I'm just an extremely positive person, but I don't see it as good but not that bad.
 

Porkette

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Hi finalpoet,

I will admit when I first started having seizures it was hard to adjust to and a lot of my family didn't want to accept the facts that I had seizures so they sent me to a boarding school out of state for 3 yrs. but in the long run I can see how having epilepsy has made me stronger emotionally along with realizing it's no big deal if a person has seizures because they only last for a short time it's not like someone whose suffering with MS or cancer each and every moment like my aunt did. I've also made it a point to teach adults as well as kids about epilepsy and what to do if a person has a seizure. Epilepsy is one of the oldest medical conditions but it's seldom ever spoken about so a lot of people may not understand it. I look at all the professional singers, sports players (NFL) along with actors and actresses and see how they still put on their shows and movies so why should I let my seizures stop me from working. If anyone gives me a hard time I just speak up and so far 3 employees have been fired for putting me down on the job. Here's wishing you the best of luck and May God Bless You!

Sue
 

Nakamova

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I don't feel like epilepsy ruined my life. I don't know maybe I'm just an extremely positive person, but I don't see it as good but not that bad.
I am in the same camp, though this is in part because I've been very fortunate: My seizures didn't start until I was 35, I was already self-employed at the time, I have a lot of family support, and, most crucially, the seizures are well-controlled by meds. So I have next to nothing to complain about.

I look at folks who have had or are having more frustrating and painful experiences with epilepsy and I wonder if I would be as optimistic under the same circumstances. I have a cousin who was diagnosed with Parkinsons when he was in his 40s, and I am reminded that epilepsy -- at least in my case -- is a disorder, not a disease, and is not degenerative. I count my blessings.
 

Cint

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I look at folks who have had or are having more frustrating and painful experiences with epilepsy and I wonder if I would be as optimistic under the same circumstances. I have a cousin who was diagnosed with Parkinsons when he was in his 40s, and I am reminded that epilepsy -- at least in my case -- is a disorder, not a disease, and is not degenerative. I count my blessings.
My seizures started when I was 22 years of age, and initially, I did have a good outlook. But, the seizures increased and nothing has worked as far as controlling my seizures 100%, including brain surgery and the VNS. So, I am still trying to stay positive as much as possible when I can. I count by blessings when I think of two cousins that passed away back in the 1980's with muscular dystrophy. That was SO SAD to watch them slowly pass.....
or when I think of my sister's niece who was killed last year by a driver high on marijuana....she lived for 8 days in a coma....the "loaded" driver will only spend a year or two in prison for killing someone. Her parents are forever sad. That was NOT their dream for their daughter. NO, life is NOT fair!!
 

Cint

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no big deal if a person has seizures because they only last for a short time it's not like someone whose suffering with MS or cancer each and every moment like my aunt did.
Excuse me! Suffering from a T/C seizure IS a BIG deal! People have died from them if they last more than 5 MINUTES. I nearly did! One woman I know lost her daughter from SUDEP. Get the FACTS!

Porkette said:
I've also made it a point to teach adults as well as kids about epilepsy and what to do if a person has a seizure. Epilepsy is one of the oldest medical conditions but it's seldom ever spoken about so a lot of people may not understand it. I look at all the professional singers, sports players (NFL) along with actors and actresses and see how they still put on their shows and movies so why should I let my seizures stop me from working. If anyone gives me a hard time I just speak up and so far 3 employees have been fired for putting me down on the job
Sue
I've also made it a point to teach my kids and all adults around me what to do when they see a seizure. My two kids grew up seeing their mom seizing several times, calling 911 and thinking their momma was dying. So, I would go to the schools and educate teachers and kids about Epilepsy, and the different types of seizures, too.
 

resaebiunne

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Yeah, seizures can lead to death. That and the lingering cognitive after effects of a tonic clonic last for weeks in my case. It is very noticeable and not fun, and one of the reasons why you're supposed to not drive for 3-6 months after a seizure.
 

Ksanchez

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I personally am having a hard time seeing many thing positive right now. My life came to a stop literally over night. I had my dream job and a great life. I was actually out with my daughter at a tourist place I'd wanted to go to for a couple years. I woke up the next morning and within a few hours I was in the hospital. I was at that point not allowed to drive, work, or even go out alone. I've been trying to find positive, but it's a struggle for sure and impossible some days.
 

C0urt

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I could always be worse, i see some of stories listed other places like reddit, and honestly I cant help but feel like i have it fairly easily.
 
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