Let's start with the history. I'm now 46 years old. I'm a Navy veteran, mother of 2 lovely children. One is now 20 and has Down syndrome and autism. The other is extremely ADHD and gifted. I'm a breast cancer survivor, getting ready to go over 6 years in January. Both my chilren and I are Celiac Disease, meaning we can't eat wheat, oats, barley or rye. I'm married to a 20 year Navy veteran. We met when I was active duty. Twenty-two years ago I held all the statistics for the Russian submarine fleet in my head, plus a few other countries and what they tell us about our submarines. I didn't have a top secret clearance, only a secret no-foreign nationals, so what they tell us, and what is actually the case, may not be the same. Now, because of the meds I'm on, I can't remember where I put my purse, when I paid the mortgage or IF I paid the mortgage. The hard part for my family is that they have always depended on me to remember everything. My husband is constantly coming to me with questions, where is X? When is Y? And now I'm having to say, "I have no idea." He blames me because I didn't write it down. I never had to before. I used to remember every single movie (and we're talking about almost 100) that my son owned so when he wanted to buy one I could say, "no you already have that one."
I have been on Topamax since I was diagnosed about 3 years ago. I have finally gotten tired of the memory deficits. I'm tired of being in the middle of a conversation and suddenly forget a word...searching....and just have to give up and say epilepsy sucks, I can't remember.
I have recently become politically active because I love my country. It's not about party, so anyone who is a Democrat, don't shoot me. I was raised a Democrat. I know Democrats who are extremely patriotic. That's why I have not been upset with any other election in history before. It just meant my dad's party won. How could I be upset? But now the Democratic party has been hi-jacked and it has opened my eyes to see that so has the Republican party. America is infected with Progressives in both parties. But epilepsy undermines my efforts. I can't argue my points live. I have to write them so that I can research, spell check, have time to check my facts and not depend on my memory. I look like an idiot when I speak because I lose words. I'm not bragging, but speaking a fact here: In high school, I tested in the top 3%. In the Navy, if I had been a man, they said they would have put me in the nuclear field. I was active duty in the 80's, when women didn't do a lot of things. I was an Ocean Systems Technician, Analyst. The rate doesn't exist anymore. It's been absorbed by the OS...not sure what that stands for, but it was around when I was in. Mine was OTA. There were OTM's, who maintained the equipment, which is what I wanted to do, but once again, it was test scores. There actually weren't a lot of female OTM's, now that I think about it. At least there was a civilian equivelant with OTM's, because it was electronics, so I suppose the Navy was a bit sexist. The OTM's probably went to sea, and then women didn't go to sea.
Topamax makes me feel like the bottom 3%. But, that said, I married a mechanic. I don't think test scores or level of intelligence say anything about a person's quality of life. My Down Syndrome son has taught me so much. I don't judge a person on their level of intelligence. I have been judged on mine, as if somehow because I use big words I think I'm better than someone else. I think that's only with people who have low self esteem. People who are sure of themselves don't have a problem with me, they see that I don't judge. I'm naive, and don't realize that some people are intimidated. I don't think first. It's like some parents of Down's kids get insulted when you put the diagnosis first...I hate politically correct. It takes a lot more key strokes to type "a child with Down syndrome." If he's my kid, and I'm not insulted, get over it. If I'm used to using big words, and I married a mechanic, and have a Down syndrome kid, obviously I don't judge on intelligence.
Actually, I married my mechanic twice. I divorced him when my oldest was 3, was divorced for 4.5 years, when we remarried. So there. It's a great testimony that I might give at a later time.
The joy of Topamax...makes you ramble. So, yesterday the neurologist decided since I'm uncomfortable with the side effects, he'll change the meds....to Depacote. Yea. Just read the side effects of that med. My husband is going to love the drop in sex drive it's supposed to cause. I'll keep this blog posted on how that goes...
How this all started? Supposedly a head injury contributed when I was 12. I fell off my bike and got a mild concussion. I was also shaken by my baby sitter when I was 5. I remember it. She shook me until my teeth just about rattled in my head. I got my first migraine right after that. Mom probably didn't know it was a migraine. I remember it hurt so bad that I cried and laid down on the couch all day. I never told her that Mary shook me. I didn't know it was wrong. I had called Mary's daughter "Sugar" and she ran and told her mother I called her a stinker. Mary didn't like my mother and constantly bad-mouthed her to me. I didn't realize all the mental abuse Mary gave me until I moved in with my mother-in-law in my 40's. We bought a house together (my family of 4 owning half the house and my mother-in-law and father-in-law owning the other half). I had always known that Mary's son had sexually abused me, but not that Mary had psychologically abused me.
Then one day, my 300 lb mother-in-law called me fat in front of company at the dinner table (when I was a size 12) and threw me into post traumatic stress syndrome. The stress started me having simple partial seizures. We thought I was having heart problems. I knew I was in PTSD, because I had been in it before, with flash backs learning of other abuse that I'm not going into here. I started remembering all sorts of things about Mary, as my MIL started doing things. It took about 5 months to figure out they were seizures. They tried to say they were complex migraines, and did a 48 hour EEG to rule out seizures. The lady came and hooked up the cap, when my MIL wasn't there. She turned on the lap top to test the leads. I saw the connection and the lines were all nice and smooth waves. I was relaxed from her basically playing with my hair to hook them up. I love that. Then I told her that my MIL would be home at any time, and started talking about her. I watched my brain waves turn spikey. Her eyes got real big as she watched my screen. She looked over at me and said, just talking about your MIL did this? I want you to log in whenever she walks in the room, or whenever you talk about her. I only read about one other person who a PERSON set off seizures. They said I was having constant seizures. I said probably because I'm around HER constantly.
We fought constantly about moving out. She said we couldn't leave her in that house because she couldn't afford to live there alone. Tough. She wouldn't be nice to me or pull her weight with the housework and was trying to rework the deal on the bills. She was jealous that we made more money and didn't want us to have more stuff than her. As soon as my son turned 18 and was elligible for SSI, we moved out. We're not paying 2 mortgages because we can't sell the other house. She sabotaged our efforts to sell for a year, until I put my foot down and started using MY realtor. It's hard to battle when stress causes seizures, and she knows it.
I'm beginning to think that all my problems may be complex seizures instead of memory problems, the more I read about them. So maybe this new med route will change that. It could just be the added stress. It's the fact that my MIL is being "nice" now. That's how she controls. If she can't have her way by being mean and nasty, she'll be nice and catch you off guard. Controlling people get to me. Sooner or later, I'll learn to deal with controllers. Prayer hasn't worked, but I guess God doesn't honor those "take your vengence out on her" type prayers...
Lori Ann Smith
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