Hi there, I am a newbie

[greathoneybear]

I was in a car accident 13 years ago. I have seizures often, partials, complex partials, drop seizures and sometimes grand mals. I tend to fall often. What upsets me the most are the seizures where I can hear people, but I cannot move or talk and I so want to scream, "I am here," but I cannot until the seizure passes. I am frustrated by the lack of medical personnel, especially the ER doctors who do not take the time to understand seizures. I just wish more people would understand you. I have unfortunately lost friends to my seizures because I have scared them. I take 4 meds to control my seizures. I think one of the hardest parts for me is being so dependent on other people.

[Bernard]

Hi ghb, welcome to the forum.

There are a lot of people working to help spread epilepsy awareness. It's not an easy task. Most people don't care unless they someone they love has it.

Sorry you lost some friends over it. I lost friends when I was younger simply because I chose to eat a vegetarian diet (and I wasn't one of those militant animal rights types either). Some people just aren't very mature. It says more about them than it does you.

Make yourself at home here.

[RobinN]

Hi there - welcome to CWE
Glad that you decided to join us.
My daughter has lost friends too, because of her seizures. Seems they just are fearful of the unknown. Most of them are just too "into themselves".
Hope you find some new friends here.

[drarvindr]

Hi and welcome.
Sorry to hear how epilepsy has turned out for you. Hope things get better.

[josieb]

Hi greathoneybear - I wanted to welcome you to the group and let you know that you're not alone. It is very common to deal with others who don't understand and to also feel how you do because of being dependent on others.
Sincerely, Josie

[sixpack]

welcome honey bear

I, too, am sorry that you've lost friends. Like Bernard says, people make stupid judgments about others mostly out of ignorance.

[ziggidypoo]

Welcome, Greathoneybear, glad to have you join us. Many people do not understand and I read recently "Don't worry about those who walk out of your life - there was a reason they didn't stay" or something like that - still hurts. Don't worry - Epilepsy isn't a plague. Don't you just hate that sternum rub the EMT's do to "Wake you up" when you are totally alert inside, feeling everything, just can't move or talk. It's the pits. Then when you can talk, the EMT's say "you gotta let us know someway that you are in there" - like, duh, I'd like to. You are in great hands here. And, yes, there are terrific EMT's who are fully aware. Just like there are good police and so on and so forth. Have fun, learning and checking everything out and making yourself at home here, ask questions. We don't bite.

[skillefer]

Hi greathoneybear! Welcome to CWE. You are going to find that this is a great group of people. Many of us have gone through the emotional roller coster of E. We know what it's like to lose friends and have ignorant medical personnel. So you are definitely not alone. Feel free to ask questions, vent in the padded room, or just chime in. Welcome to the club.

[greathoneybear]

Thank you all so much for welcoming me. I am glad to be here. I was so disappointed recently when I joined a church and was part of a womans' group and everything was going great until I had a seizure. There were even 3 nurses who were part of the group. We had planned on having a childrens' bible camp and one person called me and told me I really shouldn't come or if I did I should bring my mother and only stay for one hour or so. I have not been back to that church since. Doesn't it say in the bible, "We should not judge others?"

[justPassing]

Have a good time with us.

[greathoneybear]

Thanks Just Passing. I think I will.

[sixpack]

Thank you all so much for welcoming me. I am glad to be here. I was so disappointed recently when I joined a church and was part of a womans' group and everything was going great until I had a seizure. There were even 3 nurses who were part of the group. We had planned on having a childrens' bible camp and one person called me and told me I really shouldn't come or if I did I should bring my mother and only stay for one hour or so. I have not been back to that church since. Doesn't it say in the bible, "We should not judge others?"

that's so sad.

[brain]

HoneyBear

Welcome to CWE! Sad, but true, the need
for awareness does not just arise within
the Medical Personnel, but also with the
Law Enforcement agencies, School Systems,
the General Public, and so much more - the
Advocacy begins with you! Helping spreading
out the awareness. Finding the local Epilepsy
Chapter in your area would be a good place
to begin, for they train many members and
do have the need for more volunteers.

Frustrations do mount with the lack of under-
standing which abounds all around. Nonetheless,
slowly, but it IS a progress, more and more are
becoming aware, but the expansion for aware-
ness is even greater as it is so great and the
horizon is endless!

[greathoneybear]

I agree, and thank you about telling me to find my chapter in my own state. When I did work, the people I worked with were great. They understood that I would be the same person I am once I came out of the seizure. So I had some great friends at work. Now, I am on disability and it is harder to make friends, but I am trying. One day at a time.

[paradise survivor]

Welcome Honeybear- You haven't lost any friends, just off loaded some shallow aquaintences! Friends don't dash off. Ok, they might dash at first, but they get their act together and remain friends. We all can give examples of the 'leper syndrome' (no disrespect to the lepers) however, there are more heros than flakes. Hang in there, you have a lot to adjust to, just don't be too hard on yourself and give some adjustment time to those around you. I can only imagine what my family/friends feel when they see me seize-personnally, I am out cold and haven't a clue.

[greathoneybear]

Thank you Paradise. Love the name. It is hard on me trying to make friends and keep them, but you are right, the good ones stay. I just need to find them. I can imagine from their point of view how difficult it is to see us like that. I know recently I had a pretty bad seizure walking home by myself and my family had to find me along the street. That kind of thing would tend to be scary to people. So I can see it from both points of view. Like you said though, the good ones stay around. Our seizures do not define us. Thanks for the good advice.

[paradise survivor]

Aloha Honeybear- I too had a side of the road experiance...A couple of years ago I was walking our humane society rescue dog. I mention this because he was a tortured dog who had some issues with humanity but took to me. I collapsed at night on the sidewalk. Apparently he stood over me and barked like crazy till a driver noticed and called 911. The paramedics arrived but could not get near me because 'Harry' was still protecting me. I remember 'hearing' someone saying they needed to call the humane society to get this dog off of me. He was 30 pounds of determination. My husband finally realized I wasn't back yet and heard the sirens...put 2 and 2 together and came running. The dog finnally relented after he yelled at him, "I'm here!!" That dog saved me from who knows what! He also had the ability to know ahead of time when I had a seizure coming. I was the one who had to learn his signals and pay attention...I caught on quickly after that incident. Sadly, Harry was mauled by a pit bull and had to be put down. I still cry over that one. We have another 'rescue dog' who stays with me when I have seizures even though he is my hubby's dog (by choice) he does a good job and will lay with me all day if need be. I will continue to rely on their 'senses' and their loyalty. I did promise my hubby he would never be bored...just never realized how accurate I would be!

[greathoneybear]

How funny you say that. I too have a rescue dog that has picked up on my seizures. Her name is Honeybear. One time I was making a baked potato in the microwave and she pushed me to the chair and wouldn't let me get the potato out, it was then I had the seizure. She has stood over me, pulled me back to the house when I have had one outside, she has barked for people to come. One day she even (and this is no joke) put her paws on me to "wake me" up. My daughter thought I was dying and screamed at the dog to help. Now that is one for the books. She is a very special dog. If my head is drooping, she will put her head under mine to lift it up. She will only do that for me, no one else in the family. She always lays beside me when I am sick and calls for help when I need it. She is an amazing dog. I would recommend a golden retreiver to anyone.

[paradise survivor]

I too love the 'Golden'! So far I have had multiple positive experiances with dogs-some are my own and once it was a group effort with a stray dog and a horse...why yes, there is a story there! Note to those who read this post: people with seizures should probably avoid galloping on horseback...the ride is great but the dismount leaves a bit to be desired!

[greathoneybear]

I won't even ask. LOL. I can tell you though that a horse did not like me one bit, so it took a bath with me still on him.