Involved ?

[Kaitybugsmom]

There are times that I really wish our daughter Kait would get involved with CWE. I think it would really help her understand what is going on and to be honest the severity of it all. There are days that I think in her mind its like she had the flu. You know, just a bad couple of days but alls ok now and will be. Maybe she has the right mindset and I'm the one over reacting. Then there are times that I read things on here and I cringe and am glad that she is not involved with CWE simply because I dont want her to get worried and depressed. My question is....

If you are the parent/grandparent/husband/wife of somebody with E is that somebody also a part of CWE?

If you are the one with E, are your parents/grandparents/husband/wife a part of CWE?

 

[qtowngirl]

Hi no not that I know of, I think everyone has to have their own profile. Unless two people start a profile together; husband and wife, mom and daughter, etc., then you'd be on here as a team.
However, someone like Nakamova would be the one to ask to be sure sure.

 

[Kaitybugsmom]

I think everyone has to have their own profile.

Thats what I mean. Kait having her own profile and being active on CWE.

 

[PackerFan12]

I am one with epilepsy.

I think that the parents thoughts and the actual one WITH the Epilepsy are so totally different. Having lived with this for 13 years, I was at a young enough, tender enough age to watch and understand how it effected my parents. Being the one who HAS E, I feel like there is nothing I can do about it. . .so, forget about it and get on with my life. I have this 'it is what it is' idea about it. My parents, on the other hand, have had to WATCH me go through this (as you are having to with Kait)

I think it has almost been harder on them, then it has been on me. To have to sit back and watch your daughter go through this knowing there is nothing you can do to stop it has to be completly brutal thing for the mind and soul. You are doing EVERYTHING you can, but its not enough.

Now, being the one with E, I don't think this. I am who I am. It is what it is. Epilepsy has effected my live in MANY ways. But, as depressing as it is...I prefer not to think about it and it hasn't been untill about now (I'm 28) that I have become more involved in online communities.

However, that being said...I think it is important to be involved and hear others stories. Looking back, if I had known about these online communities I would have been more involved before now. How many times did I go to the doctor and look around wondering if the person sitting next to me had E? What would it be like to have a conversation with someone in MY shoes? On the other hand, I understand your thoughts and worries about this. . .I think the reason I never found these sites as I young adult is because my parents shelterd me from it. Like you, they didn't want me feeling more pain when reading stories much worse then mine.

The best of luck to you and your daughter. I hope my opinions can help you a bit!
Katie

 

[Kaitybugsmom]

PackerFan - Everybody's opinion helps me in some way...sometimes right away, sometimes down the road. We all know that 15 is that age where children tend to be in their own little world, and us parents dont know what we are talking about. They become more independant and in alot of ways think they can handle everything on their own. It really helps me understand what might be potentially going on in her head when I hear other people with E tell their story. What has worked for them, what hasnt, how they feel etc. It is very painful to watch, and the hardest part of it is just like you said...I cant control it, I cant stop it, I cant do anything but watch and hope that it wont happen again. For me, its the hardest thing to do.

 

[Nakamova]

We've had a few instances where both the person with epilepsy AND a concerned friend/family member are using CWE. More often, caregivers and people with E have different concerns, and are drawn to CWE for different reasons.

As far as CWE potentially causing worry or depression -- I can't speak for everyone, but I've found the overwhelming support and variety of experiences here negates any "fear factor" reading those experiences might potentially provoke. I haven't felt anxiety, just relief and solidarity at finding people who understand what the E rollercoaster can feel like.

 

[PackerFan12]

Glad I could help a bit! Your right about 15 being that age. . .as I think about it a bit more, I don't think I realized at that time exactly what my parents were going through. . .but now, as an adult, still living at home with them, I understand. They are still just as frustrated as I am. But much more scared.

My Grandpa has always told me I have a very special angel watching over me. . .and I try to think about that in the bad times. I try to think my Grandpa knows best and that Angel is always going to guide me through the rough times... I guess someday we will all know just how hard that angel had to work--not only for me, but for my parents.

I know it has to be Horribly hard for you. Hang in there. There are days now (when I'm thinking)...that I wish I knew then what I know now.
I didn't know my parents we pretty much going broke just trying to afford my medications from month to month. The insurance wouldn't pay for it. . .this is just SOME of what I now know was a struggle for them. I had no idea what they were going through (and still are) But, together, as a family, we always got through it.

 

[momof3boys]

I'm the one with Epilepsy. As far as my family goes, I think if they were to join CWE, I dont think they would be able to relate to what a person with Epilepsy has to share. So for me, Im the only one who logs onto CWE. I have told my family about CWE and they are glad I found such a supportive site that can help me relate to what Im going through. My mom and dad has been by my side since day 1. But for me, my mom is the closest person who has been there for me since this all started. So she can help me in ways that comforts me, but aside from that, she cant relate to what Im feeling, or how things are going when it comes to seizures or symptoms Im having.

 

[valeriedl]

I might be wrong about this, but I think you can get on without an account and do some reading. I don't know if you need an account to post or not.

Maybe try leaving the computer on with the browser open to this web site, not logged in as anyone. She might get on and take a look around. She can see that she can get on here with some made up name and beable to ask questions and give answers without you knowing who she is.