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epilepsy has ruined my life.

Wed, 11/20/2013 - 17:14
epilepsy has ruined my life. and it pisses me off how people think nothing of the diagnosis. it doesn't get the attention it needs for sure. when i was a kid, i didn't plan to NOT get a drivers license. i didn't plan on spending money on medicine for the rest of my life. i didn't plan that in the future it would be life-threatning to cross the road, cuz what if i have a seizure there? i hate this shit, and pardon my french, but this shit is too much, and it needs to get way more attention.

Comments

Re: epilepsy has ruined my life.

Submitted by just_joe on Fri, 2013-11-22 - 20:21

Sesat

My father would have loved having epilepsy rather then having cancer.

You see he had surgery for cancer and had check up every month for a year then thos check ups were every 3 months. Yhen they were every 6 months. well those went find and he had yearly check ups for a couple of years he then had 5 year check ups, He was a great man and did a lot for the people around him. I watched him take a grear out of a transmission a old farmer has in his tractor. a lot of teech had been broken off and the transmission was not available. Watching my Dad hook up he arc welder and lay beads down then grind them off and lay more beads down was something to watch. When he was finished the farmer had basically new rears for his transmission. But he had another check up and in that check up they saw something they thought was cancer in the lung. Surgery was set up and they opened him up then closed him. The cancer was not in his lung but wrapped around his heart. He was given 3 months to live. He died 2 days after getting home due to a blood clot hitting his heart making it explode.

He would much rather have had epilepsy because we could have been out fishing or watching the waves rol up on the beach. Or working on the old 56 chevy. You see I am well aware of issues due to having epilepsy since I have been living and dealing with epilepsy for 50+ years. Dad was one of the people in my life that made me look at other things and see the beauty in them..

Seizures are not fun and never have been but helping others with issues can be good. People may see beauty in that.

I do this for me knowing what I went thru. I do this because it was how my Dad worked things in his life. There is beauty in almost everything you just have to be looking for it or you will see nothing other then what will eat you up.

As for the awwwws. Check out the history Breast cancer has been national for about 25 years. National epilepsy awareness has only been national about 4 years.

Have you gone to the trouble of checking with your local paper or city counsel and let them know this month is epilepsy awareness month? If you haven't why not since you want it to be covered by people like cancer is. Have you even checked to find out where your local chapter of EFA is?

Stop feeling sorry for yourself and start living and dealing with epilepsy. Promote it yourself by talking to people and telling them what epilepsy is. Let them know that there have been many people with epilepsy go fr in their lives. Research ans study find out the types of seizures educate the masses, Go to schools and give speaches. When I was diagnosed I didn't know chit about what epilepsy was but I did want to know what was causing my seizures. I wrote an essay in 8th grade which was given to the entire student body. The same essay was being used by the school 5 years later. It informed people about the types of seizures what causes the seizures and what needs to be done if they see someone in a seizure. Have you done any of thoose things regarding why you have seizures what type of seizures you have and what should be done if people see you in one?

If not try starting there.

Sesat

My father would have loved having epilepsy rather then having cancer.

You see he had surgery for cancer and had check up every month for a year then thos check ups were every 3 months. Yhen they were every 6 months. well those went find and he had yearly check ups for a couple of years he then had 5 year check ups, He was a great man and did a lot for the people around him. I watched him take a grear out of a transmission a old farmer has in his tractor. a lot of teech had been broken off and the transmission was not available. Watching my Dad hook up he arc welder and lay beads down then grind them off and lay more beads down was something to watch. When he was finished the farmer had basically new rears for his transmission. But he had another check up and in that check up they saw something they thought was cancer in the lung. Surgery was set up and they opened him up then closed him. The cancer was not in his lung but wrapped around his heart. He was given 3 months to live. He died 2 days after getting home due to a blood clot hitting his heart making it explode.

He would much rather have had epilepsy because we could have been out fishing or watching the waves rol up on the beach. Or working on the old 56 chevy. You see I am well aware of issues due to having epilepsy since I have been living and dealing with epilepsy for 50+ years. Dad was one of the people in my life that made me look at other things and see the beauty in them..

Seizures are not fun and never have been but helping others with issues can be good. People may see beauty in that.

I do this for me knowing what I went thru. I do this because it was how my Dad worked things in his life. There is beauty in almost everything you just have to be looking for it or you will see nothing other then what will eat you up.

As for the awwwws. Check out the history Breast cancer has been national for about 25 years. National epilepsy awareness has only been national about 4 years.

Have you gone to the trouble of checking with your local paper or city counsel and let them know this month is epilepsy awareness month? If you haven't why not since you want it to be covered by people like cancer is. Have you even checked to find out where your local chapter of EFA is?

Stop feeling sorry for yourself and start living and dealing with epilepsy. Promote it yourself by talking to people and telling them what epilepsy is. Let them know that there have been many people with epilepsy go fr in their lives. Research ans study find out the types of seizures educate the masses, Go to schools and give speaches. When I was diagnosed I didn't know chit about what epilepsy was but I did want to know what was causing my seizures. I wrote an essay in 8th grade which was given to the entire student body. The same essay was being used by the school 5 years later. It informed people about the types of seizures what causes the seizures and what needs to be done if they see someone in a seizure. Have you done any of thoose things regarding why you have seizures what type of seizures you have and what should be done if people see you in one?

If not try starting there.

Re: epilepsy has ruined my life.

Submitted by 3Hours2Live on Fri, 2013-11-22 - 23:27
Hi Just_Joe, Epilepsy is socially worse than cancer, as epilepsy is still stigmatized AND regarded as illegitimate (with (Cell 4*) social consequences), while cancer is sometimes stigmatized (such as with prejudice to regarded causal & chosen "unhealthy lifestyle") BUT regarded as unconditionally legitimate (Cell 6*): *Preview of "Profession of Medicine: A Study of the Sociology of Applied Knowledge" by Eliot Freidson (1988), page 239, Table 2: http://books.google.com/books?id=G7vhOk_bYlsC&pg=PA235&dq=Friedson++%22analytically+peculiar%22&hl=en&sa=X&ei=Y6-PUq7mM6HK2gWY5oDwBw&ved=0CDMQ6AEwAQ#v=onepage&q=epilepsy&f=false The work of literature I cited previously that posed by character "epilepsy" as a "good choice" for a plethora of excuses and hoped for benefits, was a work of literature often regarded with many instances of satire ("The Mangy Parrot", unabridged has more): http://books.google.com/books?id=l4biFTzD3p0C&printsec=frontcover&dq=mangy+parrot&hl=en&sa=X&ei=xA6QUtDPCMeR2QXB-4CwBA&ved=0CDoQ6AEwAA#v=onepage&q=epilepsy&f=false While some studies conclude that the social stigma of chronic migraines is worse than that of epilepsy*, I have never been told to leave a school, university, hospital, nursing facility, etc., because I revealed my migraines, but when I reveal my epilepsy, I've been ordered to leave under threat of arrest otherwise (many people with epilepsy dogs encounter this, too!!!). * http://www.sciencedaily.com/releases/2013/01/130117084641.htm Then, some epileptic seizures could easily meet the criteria of being "fun". Some individuals can purposely trigger ecstatic seizures, and they will refuse most any attempts at prevention, despite typically unpleasant after effects. I can't trigger mine, but many are divine, being better than opium and/or orgasm, and while Keppra prevents secondarily generalized tonic-clonics during unpleasant clusters of periodic seizures, my daily seizures are unresponsive to such control, and it is as if happiness cannot be tolerated in this society without certified prerequisite pain of a socially acceptable type. The phrase "Father, why have you forsaken Me", does not indicate an entity necessarily "feeling sorry for themselves". Tadzio P.S.: What is the person with the worst to say???: http://www.nytimes.com/2010/07/28/arts/design/28callahan.html?_r=0 after being told again "People like you are a real inspiration to me!" http://www.nytimes.com/imagepages/2010/07/28/arts/28callhanimgC.html

Re: epilepsy has ruined my life.

Submitted by just_joe on Mon, 2013-11-25 - 09:27

I understand where the stigma is and I have lived with this for 50+ years. I have family members who do not ask about my epilepsy because they were not around me when I had the seizures. I know what was done and by whom.

The stigma is there YES but how do you fight the stigma other then talking about it. Is it wrong to try and get people to discuss and think? I know the stigma. I also know that many things are or have been in the national head light for far more years then Epilepsy has.

I know that there were people with epilepsy being put in homes away from the public in the 1960's. I also know that in the 70"s some states were keeping people with epilepsy from getting marriage licenses.

I saw my PCP during the first wek of this month andI asked him if he knew what this month was. His answer was november and thanksgiving. Which is when I told him what this month was for people with epilepsy. I will be seeing him next week to see if his nurses and the office have replaced the pink ribbons to purple.

Am I wrong in trying to get people out and in the public to tell the people around them about epilepsy?

How do you get rid of the stigma?

How do you change the way people are dealing with epilepsy other then teaching them we can do anything they can as well if not better then others do?

I understand where the stigma is and I have lived with this for 50+ years. I have family members who do not ask about my epilepsy because they were not around me when I had the seizures. I know what was done and by whom.

The stigma is there YES but how do you fight the stigma other then talking about it. Is it wrong to try and get people to discuss and think? I know the stigma. I also know that many things are or have been in the national head light for far more years then Epilepsy has.

I know that there were people with epilepsy being put in homes away from the public in the 1960's. I also know that in the 70"s some states were keeping people with epilepsy from getting marriage licenses.

I saw my PCP during the first wek of this month andI asked him if he knew what this month was. His answer was november and thanksgiving. Which is when I told him what this month was for people with epilepsy. I will be seeing him next week to see if his nurses and the office have replaced the pink ribbons to purple.

Am I wrong in trying to get people out and in the public to tell the people around them about epilepsy?

How do you get rid of the stigma?

How do you change the way people are dealing with epilepsy other then teaching them we can do anything they can as well if not better then others do?

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