Your hope, your life, your dreams

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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.
 
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
 
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.
 
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!!
 
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.
 
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.
 
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.
 
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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