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Old 12-11-2002, 02:45 PM   #1
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Join Date: Dec 2002
Location: Rhoadesville Virginia, USA
Posts: 7
Rhonda Mann HB User
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I found this board while desperatly searching for some understanding of what is happening to me. I have learned a lot from the people here and plan to stick around.But as I have read past post I admit to feeling a little out of place. I am already 100% disabled so I don't have to worry about a job or change of income. My disability is service connected so I never have to worry about the cost of medical care. I don't even have copays. After reading about Ray and thinking about all the years I was in his possition of not being able to work because of a disability and not being able to get assistance because I had not received a proper diagnosis I am greatful that this is happening now and not seven years ago.
I can not imagine the terror and sense of impotence that would come from watching your child go through this. I think it is easier for me to deal with it in myself than it would have been to watch it in my stepson who is my heart.
I won't get the most up to date treatment and I won't get it very fast. But I don't have to worry about what an HMO will approve. My doctors never have to justify my treatment or test to insurance companies. They don't have to think about what they spend on me. The buarcracy of the veterans hospitol keeps them five to ten years behind, but they are totally unrestricted in other ways.
I am scared and confused and loosing my drivres license will make life a nightmare because I live in the country 20 miles from town and 80 miles from the hospitol I am treated at.
I don't live alone but my room mate works days and goes to school at night so that I am here alone with the dogs 80% of my waking time.
I can't call an ambulance because if they rule it none life threating I have to pay and my disability income leaves nothing to budget for that. After falling asleep behind the whell last week drivung to the VA I am afraid to drive in the aura again. I have to wait until it is over, which is the next day, then there doesn't seem to be much point in going to the er. I just keep thinking maybe it won't happen again for a while.
Mostly I wanted to say that the people who post here have my respect and gratitude.It is beautiful people that reach out to help and be helped.

 
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Old 12-11-2002, 05:12 PM   #2
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Join Date: Apr 2002
Location: VT USA
Posts: 450
Krazykcio HB User
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Wow!
I think that, as each of us goes through this list, we find something we can personally be grateful for, and our hearts break for many of our fellow seizure sufferers. That is what I love about this board. We are lucky to have each other.

Your predicament is similar to mine, in that I live pretty far from my Doc and the hospital. But, it just so happens that my son has been very active in our local volunteer ambulance corps., and the attendants couldn't be kinder or more professionally trained when I have been forced to call them. In fact, one time I was "in-stat", seizing away while in the ambulance. My husband was out of town, but, lucky for me the crew that was transporting me knew my son's work #. They called him for medical information on me, which helped with my treatment. My insurance has never questioned me calling either, so I feel pretty lucky. I feel so bad for you....to have to drive yourself to the hospital...and SO FAR!!! You going through all this, but my sense was that you were more concerned about what some of the "board friends" are facing. I guess it just goes to show you that we really are all in it together. I feel so blessed by the members on this board. Be well friend....we're here for each other. Kathy
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When Mamma ain't happy ain't noone happy!

 
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