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This place is NOT a supportive place.

Tue, 08/29/2006 - 12:25
I tried to email this to the Moderator so it would not be placed in plubic, but it came back as unable to deliver, so then I tried to send it to the webmaster and it came back too. So I will post it here. Dear Moderator, First let me say hello and good morning 0(*_*)0 I am sadden by what I do not see at your website and felt the need to verbalize it. I joined Epilepsy.com a few days ago in the hope of gaining in-site as well as maybe a few new friends. I first found a tread that I felt I may be able to give a small input to, so I reply to it. I was not only the first to reply but as of this morning, the only one to. I even went to one of your treads you have for new people and open a tread myself, just to say hello I'm new here. As of this morning I have yet to get a reply from anyone saying "Welcome". Not even a staff member has said hello on it. It saddens me to see how little if any caring people are at your site. I noticed others who had done as I had and started a "hello I'm new tread" and like myself had no one reply. I have been a member of the epilepsyfoundation.org for many of years and it has some of the greatest members you will ever come across at it. We all (most of us) will always welcome and even give a hug to any and all new members. Years ago when I was having 30 plus seizures a month, and had lost my Lic. to drive due to my seizures, thank goodness I had loving and caring friends at epilepsyfoundation.org to turn to. People who lifted my spirits up and said things on the lines of "Sending you hugs Tonya". I haven't open/started a tread there in a few years but I try to reply to any and all if not to say anymore than "My heart goes out to you" or "I'll keep you in my prayers". You see I had a RTL 1/13/98 and have remained seizure free/drug free so I am "living well with epilepsy" so to speak. But I'm not alone for many like myself will always take a few min. to give a reply or a hug where needed. I guess I'm rambling on a little to much here, but what it all comes to is kinda like this. Your site is not a warm, caring and welcoming place to be, it is cold and uncaring. Thâñkš ƒô® Ÿóú® †ím€!! Dovie aka Tonya (¯`'·.¸¸.•Dovie••(¯°¤• •¤°¯)••Hug§•.¸¸.·'´¯)

Comments

Re: This place is NOT a supportive place.

Submitted by EKlairsmom on Tue, 2006-08-29 - 13:16
I am so sorry that this web site has not helped you or has not been warm and welcoming. I hate that. I myself have had some threads not answered but for the ones I have, I have found great friends and other mothers dealing with the same stuff as me. I really am sorry that ths was not your experience. I think that all of us needs the feeling of being welcomed.Please give this web site a little while longer and maybe you too will find it warm and open. Please know that I welcome you and wish you the best...hugs from me to you!! Emily Klair's mom....Kari

Re: Re: This place is NOT a supportive place.

Submitted by Dovie on Tue, 2006-08-29 - 13:40
thank you and how very nice of you. I do hope you cont. to get surport here. Dovie Had a RTL 1/13/98 I am now seizure and Med free. "For daily need there is daily grace; for sudden need, sudden grace, and for overwhelming need, overwhelming grace." ô¿ô 0(*_*)0 0(Q _ Q)0 ( ^ . ^ )

If you are a mother of 2

Submitted by solis on Tue, 2006-08-29 - 14:34
If you are a mother of 2 grown kids, chances are good we are similar in age. I had my surgery last January, after I lost my 10 years of control (and had begun driven, for the first time in my life, @ over 40years old). Having had epilepsy since I was three (simple and complex partial seizures)I was uncontrolled for just under 39 years. I had my surgery last January; so, I'm hopeful (if all continues as it has so far) that this is my final year on AEDs. According to my epileptologist, that's the intent. Your first post was just made yesterday. Dovie. I'm sorry but few people roam these posts to the same degree on weekends. IMO, you could be a positive influence to many still coping with E, and I assure you no one was purposely ignoring your post so I don't believe the hurt you feel was intended by anyone. laters, ~sol

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