What its like to be me

[mia3769]

Where do I begin? ..... I grew up in Coal City, a small town about an hour south of Chicago. I had a normal childhood at least what I thought was normal. When I was six the man next door started a sexual relationship with me, this went on until I was 12 when I finally broke down and told a friend, who told her mom. A year later my dad was diagnosed with lung cancer. He suffered for six months and then he was gone.
I have one older brother and one younger brother, Aaron and Andy we were then left to fend for ourselves while mom went out looking for a new husband. She had many live in boyfriends after that. We did a lot of screwing around while my Mom was away. One night Aaron and I were riding around with Aaron's girlfriend when she apparently fell asleep and drove us off a bridge while we were on the interstate. I was thrown through the hatchback of her camaro. Luckily, we missed the river; the car was launched off the guardrail that it hit head on and flipped at least four times in mid-air. I remember everything seemed to be going in slow motion. When I woke up I was next to a tree not knowing what the heck happened. I crawled to the car that was upside down, with my brother and his girl still inside. I pulled and pulled on the door to try and get Teresa out her leg was sticking out of the door and the door was curled around it. I gave it one last pull with all my might and the door just popped open releasing her. Amazing what adrenaline can do.
It took a long time to wake Aaron. He hit his head just as hard as I did but he wouldn't wake up. When he finally did get up he handed me his little, I mean "dinky" pocket knife and pointed me towards a house across the corn field. I was 14 bleeding from the head, neck and back and scared out of my wits. After I jumped the barb wire fence and am maneuvering through the pasture in the pitch darkness I heard a deep scary grunting sound. I swung my "dinky" pocket knife and took off running. I got to the farmhouse and they called an ambulance. The paramedics later told me I had tried to stab the farmers cow.
I started to date the 24 year old son of one of my Mom's boyfriends when I was 14. Steve was a beautiful blonde, with sky blue eyes. I never understood why he wanted me, but I didn't care. We moved in together when I was 15. Steve was a baker and we started a bakery business together in Streator, Illinois. The business turned out to be a great success. Too bad I was too young to understand that everything was in his name and would get nothing if I ever left him. After Mom broke up with Steve's Dad my Mom wanted me to return home?? Which I did only after Steve and I started having problems.
Mom returned to the singles clubs where she met Vernon. At first I thought he was the greatest thing that walked the earth. He treated my brothers and I good and seemed to love my Mom. They decided to get married when I was 16. But about 3 months before this was to happen Vern started to make sexual advances towards me. I kept pushing him away but he kept it up. I couldn't tell my Mom, she was finally so happy. So I moved in with my Grandmother who I confided in and still do to this day. I finally told my Mom but she, as I suspected, didn't believe me.
While I was living with my Grandma I was introduced to Jay a good looking dark haired boy who drove a motorcycle. I ended up pregnant and had a son, Jeremy when I was 17. Jay and I started having problems when Jeremy was about 2. Jay liked to see other women and started seeing my cousin Connie. Connie who had been more of a sister to me than a cousin fell for Jay. I pretended to want Jay back to break them up NOT because I wanted Jay but, because I missed hanging out with Connie.
Soon after this Mom started to see Vern's true ways when he did the same thing to other female members of the family including Connie. You could say that it devastated me that she didn't believe me when I told her the first time, my feelings for mom have not been the same since. Don't misunderstand me, I love my Mother!! But, I am just not sure if she feels the same???
Soon after all this I decided I wasn't going to depend on anyone but myself from then on. I went to college in Cedar Rapids, Iowa for welding. I worked many places, finding out the hard way that a lot of the guys didn't like the fact that a girl could do the same work as them. This fact only fueled me. I have been a great welder/fabricator since 1994.
In June of 2006, I remember this only because it was the night before father's day, I had my first grand mal seizure. I was working in the yard all day and that evening I just collapsed and started convulsing. My girlfriend, Kasey who I was living with at the time witnessed it and told me about it the next morning. At first I didn't believe her but after they started occurring everyday sometimes 2-3 times a day I started to believe.

I was arrested for attacking a police officer a month later. The officer thought I was on drugs or drunk he said, because I was acting erratic and slurring my words. But I had just had a bad seizure minutes before and so I only remember bits and pieces of the event, my friends filled me in later with the rest of the gory details.

I lost my cousin Connie in 2007 she had a love for driving fast and it took her from me when she was on 36. I miss her every day and everything still reminds me of her. I cant wait to see if she opens the gates for me!!!!

I went back to work for a company called Flexco. This company respected the fact that I was a woman welder and treated me very well. One year with the company and they made me supervisor and trainer of the weld shop. I was respected by most of the guys,( there was always a couple of guys who thought I should be home baking cookies), but it made me feel good about myself to be in a position to help the new guys and I looked forward to going to work every day. In 2009 it became apparent to my bosses that I was sick when I had a seizure at work. My Doctor and my boss both decided it was no longer safe for me to work anymore.
For a year I stayed in my bedroom, depressed and afraid to leave the house alone. It's 2011 now, not as depressed but still very afraid to be left alone. I used to be able to tell when a seizure was coming but not anymore. I can't drive anymore, So I can't leave and I don't want my friend to leave me alone, in case another bad seizure like the one that left me in this wheelchair happens.
I guess what I miss the most is the freedom I used to have. One of my favorite things to do was go fishing and hiking. Just walking down the trails in the state park all alone was so peaceful. I also used to love to work in the garden but now I feel as if I need an escort. My friend needs to be able to work and I am so afraid I'll have to be put in a nursing home at the age of 42.

Any Advice for me

[Nakamova]

Hi mia3769, welcome to CWE!

You've had many ups and downs, to say the very least. I'm sorry that you're struggling with loss of independence and mobility, and the anxiety that can come with less-than-perfect seizure control. Those are big issues for many CWE members, so you've come to the right place for understanding, support, and advice.

A few questions...

Any chance a change in meds or dosages might help with seizure control? That would be a first step to feeling more confident out in the world. Are there any social service groups that could provide transportation and/or social activities? Have you contacted any local epilepsy support groups? They might point you in the right direction. And maybe you could get a pet -- either just for companionship, or a service dog for seizure protection.

I'm sure others will chime in soon. In the meantime feel free to make yourself at home, check out all the forums, help yourselves to snacks, but stay away from the coffee until they make a fresh pot...

Best,
Nakamova

[mia3769]

Thanx for replying I was beginning to wonder if anyone would. The doc just changed my meds again added the lamactil so im on day 3 of that now. im considering trying aroma therapy have u heard anything about this???

[Nakamova]

There's info about alternative/complementary therapies here:
http://www.coping-with-epilepsy.com/...ive-treatments

and aromatherapy in particular here:
http://www.coping-with-epilepsy.com/...p=aromatherapy

I've read of a few cases where jasmine has helped, especially if there's enough warning time.

A great book to read if you haven't already is "Epilepsy: A New Approach". It's co-written by an epilepsy-patient-turned-researcher, and a neurologist. It suggests medical and self-help techniques that can potentially help with seizure control -- biofeedback, psychotherapy, nutrition, relaxation, exercise, stress reduction, and journal keeping.

[mia3769]

I have been keeping a jornal for a while now i do best in the morning thinking wise so i write everyday at 5 am. i havent been able to concentrate or focus on anything sine i had a bad seizure a couple months ago doing physical therapy twice a week trying to recover. looking for anything to help theres not nuch out here in this area as far as help groups as far as i know

[Nakamova]

A journal can sometimes help in identifying specific seizure triggers -- just jotting down stuff like how you slept, or what you ate, where you went can sometimes be revealing. But yes, it can take energy and focus, not always available to folks with E...

These groups may be worth checking out, at least as a starting point:
http://www.epilepsychicago.org/progr...upport-groups/

And here's contact info for a support group in Evanston:
Beyond Epilepsy
Mailing Address: 930 Chicago Ave., Apt 3, Evanston, IL 60202
Contact: Patrick Onuscheck
E-mail: beyond.epilepsy@gmail.com
Phone: 847-859-2362
Description: The Beyond Epilepsy Support Group meets on the 2nd Thursday of each month at 7 p.m. at Evanston Hospital, 2650 Ridge Ave., Evanston.

[mel239]

keep a journal i kept saying I would start and after 3 years I never did but it would have helped.Im pretty controlled on 2 meds-I have left temporal lobe E and all the great crap with it.Ive lost alot and had a crappy time-i like to garden and things do get better and are looking up--they may not seem like it now--but time does make it better.I have had a crappy abusive past also but mostly in my last marriage.I come from a military family which was not a normal childhood at least not in mine but we all have crosses to bear and it sounds like a bit of therapy might help out. i dont hold much for the psycho sciences myself but when it comes to brain disorders there is such a fine line that some sessions were a bit helpful-plus they made my epileptologist happy.And it never hurts to have a little reassurance that my hallucinations and personality issues are from E and arent coming from a mental disorder

[SevenC]

I totally understand the attacking and not remembering. My first seizure was very very bad and when I came out of it, I didn't recognize anyone. My husband was trying to hold me up, and I was hitting him. I didn't know who he was, I was just defending myself. Luckily he was ok.

I'm sorry you're having such a hard time and I wish you luck as well.

[mia3769]

Thanx,

Yea I get this alot I never recognize anyone and always come out swinging. I'm
sure ur husband understood, at least I hope so!!!!