Lynn,
In reading your letter over again, I see you asked me some questions or I thought of some other things to say.
I did not have seizures often --maybe a few a year-- I don't remember and like an idiot -- I didn't it down when I had them. But one thing I wouldn't be doing is driving. Didn't the Dr. tell you not to? No, I don't drive -- but it isn't because of EP. My car was out in the snow( I live in Indiana). They do a good job of clearing the snow behind the cars but not between them or take the snow off the cars. So my daughters would come by on the days I worked and clear the space between the cars and take the snow off the car for me one year. They were afraid I would fall and nobody would see me. I decided I didn't want them to do it again-- so I sold my car and quit working. I was a Home Health Aid for 25 years. I've been divorced for 38 years. (Not my choice)
I live in a HUD building in a Retirement Center of about 1,200 people. I live in a 3 room with bath independent apt . We have 2 Independent apt, buildings, 2 HUD buildings, 4 groups of condominiums, Assisted Living, and Health care. There are 150 apts in my building.
I have never had auras. Somebody has to tell me that I am not acting my usual self. I had migraine headaches every 2 weeks when I was married but don't have any now. They were not at the same time as the szs. I never had headaches connected with the szs.
I was on a few different meds thru the years -- but like the szs-- I didn't record them. I wish I had. When I was diagnosed (DX) my license was taken away for a year. I then had 3 daughters, 2,4, and 6. They are all in their 50's now.
My ex had been an orderly in a hospital so he knew how to take of me. My daughters would call him and he came immediately. I would wake up in bed -- crying -- because I knew I had another sz. I always felt supported by him and he taught my girls what to do. He and I decided we were going to talk about having EP but the only thing I ever heard his folks say was that they didn't think it was necessary to talk about it. They were always there to help with the girls. My folks lived in Ohio. My dad was an organic farmer and of course was against drugs. But he never said anything. But because of how I had been taught -- it took me a while to rap my head around the idea that I would be on drugs the rest of my life. I have never felt ostracized because of having EP.
In fact I moved here because I knew I acted different before a sz. Last month I was in charge of the birthday party in my building and I told the group of about 80 about my last sz. I did this for a couple reasons. I wanted them to know that if you aren't where you usually go-- someone will check on you; there were rumors I heard and they were not all the same and I had papers made with my daughter 's phone numbers who live here in Goshen for them to take home. Their numbers are also in my ID bracelet that I wear on my right arm and behind my apt door.
Our decision to talk about EP is a decision I have never regretted. I have had a lot of compliments that I was willing to talk about it.
Millie
----- Original Message -----
From: armyde31@ymail.com
To: epilepsy@yahoogroups.com
Sent: Saturday, October 06, 2012 9:11 PM
Subject: [epilepsy] Re: Hello, new group member-seizure questions/Hello Millie *:)///
Thanks so much Millie for getting back to me. :)
Wow! I am beyond words to hear you have been suffering from seizures for over 50 years. That is terrible! Have you had various types of seizures through out those years?
Yes, tonic-clonic seizures although some doctors still use the word: grand mal. I don't specifically black out so to speak but don't remember parts of the seizure. Lately I haven't been getting much if any auras-warnings. I do notice I get behavioral changes rapidly or the typical head pressure or head ache. I try to nap when I feel things coming on.
I haven't had any luck with various types of medications and since having a pre-existing condition already most meds made me feel ten times worse or my seizures were getting to be more frequent. I see two different groups-neurologist specialists. They contribute my severe Idiopathic Gastroparesis with causing my seizures. Two bouts and recent of reoccuring viral meningitis sure doesn't help either.
I don't drive when having a bad head day or not feeling well. I am hoping to still be able to drive but do fear I might have a seizure without warning one day behind the wheel. Do you also still drive?
How was support from your family and friends when dealing with your seizures?
Thank you so much for your warm welcome into the group and praying you have many, many seizure-free days.
Many Blessings,
Lynn :)
[Non-text portions of this message have been removed]
No comments:
Post a Comment