Kevin,
I am a mom...my daughter has had seizures since the age of 4
months when we found out that she had a brain tumor and Aicardi
Syndrome. Julia has daily seizures and I long for the day that we can
say that her seizures are almost gone so, I am so glad to hear that
you are doing so well seizure wise. I have always looked at the glass
as half full instead of half empty...yes I am an optimist so, in
regards to being almost seizure free I am so happy for you. In
regards to your life goals I would say....your life has just begun and
you have the world at your fingertips..
Wendy
On Tue, Jun 16, 2009 at 7:32 PM, Kevin<kevluvskats@
>
>
> 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)
> 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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