Hi Kevin,
Welcome to our group.I became very sad as I read your letter.
I thought --"What a waste of a human being"
Have you had any counseling? I don't know where I would be if
I hadn't counseled with different people. I still have some one
I can go to where I am -- church, the retirement center where I
live, family counseling, etc.
You need someone to tell you "You are OK". Try taking an assertive
course.
What kind of szs do you have? How often? What meds are you on?
Millie
> My life has sometimes been called Unstable, and it seems like this:
> Back in 1956 when I was born with Epilepsy no one knew much about it. So
> in school, where most teachers and the board of education were lacking the
> knowledge of it this is what happened to me.
> Kindergarten PS 37, then shifted to St Catherine of Sienna Catholic
> School grade 1-4. The 4th grade teacher was a bit scared and she couldn't
> handle it so I was shifted to PS 30 to do grade 5. Then JHS 72 was where
> grades 6-8 were spent. Bayside HS kept me for grades 9 and 10. Hillcrest
> Annex HS where GEDs were given took me at grade 11 and 12. I got my GED.
> Then the Vocational Rehabilitation at North Shore University Hospital had
> me, and next the Flushing Office of Vocational Rehabilitation. That was
> the school or learning life.
>
> This is the working world:
> I applied at 29 Temporary agencies and through the course of 1973 to 1986
> I had done 96 Temporary jobs which were (Asst Bkkpr, Mail Clerk, File
> Clerk, Figure Clerk, Stock Clerk, US Postal mail clerk and midnight, Dept
> store Warehouse jobs, cleaning up offices, and an accounting clerk which
> to me was the same as the bookkeeping)
> point of 70 wpm at one point, but it could never reach that high again. I
> really wasn't cut out for office work. My seizures were coming mostly at
> night, and in a weeks time from 3-9 per week. One day in 1986 while in the
> office doing bookkeeping, for some reason I was at work then awakened in
> the Hospital. I asked the nurse what was wrong, she said "You had 4 big
> seizures at your job back to back." That never happened before. So the Dr
> there had suggested "Do not return to work. It was because of the working
> too fast and too hard that I went past my stress limit and the Tension and
> Stress provoked those big seizures. After that in that year I was put on
> Soc Sec Disability, given Medicare and Medicaid, and began to live as if I
> were an Elderly person. Waking up and watching others go to school in the
> morning. One of the biggest hurts was watching my nephew go from Diapers
> to PhD. In all that time I haven't accomplished anything.
>
> the Medical journey:
> These are the Hospitals that were not of much help in NYC.
> Jamaica Hospital, Queens General Hospital, Mary Immaculate Hospital,
> St Johns Hospital, North Shore University Hospital, Montefiore
> Hospital, Columbian Presbyterian Hospital, Long Island Jewish Hospital,
> and a few others.
> In Atlanta where I stayed for 4 years, Emory University Hospital realized
> that two of the medicines I was given by the NY Drs was not right.
> Mysoline and Tegretol were not supposed to be taken together because one
> cancells out the action of the other. So thats why seizures kept coming.
> That Dr replaced Mysolie with Keppra and changed Tegretol to Trileptal and
> I noticed a great big decrease of having seizured down to 1 per month.
> Then I moved to a disability apt building in Connersville Indiana for 6
> months, then went to Omaha Nebraska where miraculously one good
> Epileptologist did what all the others never thought about. Dr Sanjay
> Singh University of Nebraska Medical Centers Epiletologist, had nurses,
> himself and a Video EEG monitoring done. He then had an MRI, EKG, EEG, and
> Cat scan done. and had me off my meds for 3 days while in the hospital so
> that he could see face to face with the nurses and the video as a witness
> exactly what was happening, where the seizures started and where they
> spread. He said the diagnosis of the NY Drs was not accurate. They have
> always told me I had Right Temporal Lobe seizures. Dr Singh found out
> thats where they start but they spread to the Frontal Lobe as well. He
> increased my Keppra from 500mg per tablet to 1000 mgs per tablet two in
> the morn and two in the evening along with 300 mg of Trileptal 2 in the
> morn and 2 in the evening. Seizures have decreased to 1 per 6-8 weeks now.
> So glad I met him. I moved to Hawaii and had a roommate who has
> Fibromyalgia, Diabetes, Broken ankles, Depression, and Chronic pain and
> chronic Fatigue syndrome. Stayed with her 3 years total, now I'm back in
> NYC with my family.
>
> When I was younger My Drs and family had said to me, and this is where my
> biggest problems are, not so much from the epilepsy but from how I was
> treated growing up because of them. the Psychological Damage is deeply
> serious. What do you think you'd do and how would you feel if for more
> than 40 years you were told
> 1 you have a learning problme
> 2 you shouldn't and don't drive
> 3 you shouldn't go to college its much too stressful and that would truly
> trigger plenty seizures
> 4 you are not marriage material, no woman would want to marry a
> handicapped man.
> 5 having epilepsy means your demon possessed. One scripture says Jesus
> heals a demon possessed boy, in another translation it says Jesus heals a
> boy with seizures, and in another translation it says
> Jesus heals an Epileptic (thats how people see epilepsy as demon
> possessed.
> Upon growing up hearing all these negative things, did go through
> extrememe Depressive bouts and had to have Elavil, Triavil, Haldol,Valium
> and Celexa to deal with those. I got to the point where in 1988 I was
> just convinced that life for me was just going to be different. I have 5
> older brothers and sisters who just went through school like normal, went
> to college graduated got married and have children. It hurts like crazy
> to even be around the family knowing that I just don't have the same
> options available, my life won't be the same and can't be the same. I
> have come to accept, I'm different, and it makes no sense to dream of
> wish or hope of anything because I just so different, I'm not normal, and
> it is truly hard when it comes to relationships because most women do,
> want a man who works, can drive, and has an income other than just a
> small disability check. I have been on more than 70 Dating sites to no
> avail. Recently though, another handicapped woman in TX who wants a
> companion and not a husband is willing to accept me and have me move in
> with her. She needs someone with her just as I do.
>
> In many Epilepsy Support Groups they talk about Education, Work,
> Treatment, etc... yet most of my problems are based on the Psychological
> Damage done by the way I was treated growing up. This may seem unusual but
> never have I had a male friend in my life. Why? They were the ones that
> teased, mocked, didn't want to be near me or didn't want to play with me
> so I made up my mind long ago that I will be a pet person, and no boys,
> men, or males were going to be a part of my life at all. Never. So just
> Cats, and other depressed and handicapped girls or women. I also got used
> to doing things that didn't require a second person. Reading, Drawing,
> gardening, and being creative. I grew up to be a Loner, Reclusive,
> Nonchalant, Content, calm, collected, not a group person at all. I didn't
> want to be with my family on Holidays at all. Spent most holidays in my
> room. Even at the age of 53 presently, while I'm glad the seizures have
> almost gone away, my problems stem from not knowing what to do with my
> life at present. I have no Goals, Dreams to pursue or anything. At 52
> being so close to what soon would be elderly or senior citizen what is
> there left for me to do?
>
> Has anyone had a similar experience? Please tell me and if you want Call
> me and we can speak about it.
> (718) 978-1455 > Kevin Knight
>
>
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