Question about this site

About nine years ago, I used to frequent a message board related to Meniere's. It was owned by a gentleman called Ray Hines . The format was very different than this site is. There was a moderator (who became controversial and was relieved of his/her duties) and as far as I can remember , there was only one "room".

I came across this site a couple of days ago and while lying awake last night it occurred to me that this forum could be a reincarnation of the site I used to go to. There were posters named Gregg and Judy ( I think they may have gotten together) They had a mock wedding one night in chat. Gary and Sandy got married. I remember a "DizzyVickie "who started her own site, there was a "SweetSue" from Saskatoon, a Jill from Wpg who called herself "yarightj". I also remember a "sportyjeff", a "mel" and I think "doc". There were more but, it was 9 years ago and I've had a lot going on since then!

Are there any posters here now who were at that board or do you know about any of them? Maybe I am in the wrong place . If so, just ignore and please forgive me for the intrusion.

I hope I have chosen the correct room to post this in. In my day there was only one room.

Hope all who read this have a spin free day.
Regards,
old timer

 

..this is probably the correct site but dizzy vickie is the only name I recognize but that's because I vist her site every so often. I think I've only been around about 6 years. Send Ray an email.
Rick

 

Yes, this site belongs to Ray Hines and has undergone several face lifts. Many of the people you name are gone, but some of the names are familiar.

We moderate ourselves and Ray (Solari) jumps in if there's a problem.

Welcome back!!

 

Thanks Linda and Rick. The place sure has changed over the years. Good thing I haven't!

 

This will date me, but I can remember two people hitting it off and maybe even got married. This may very well have been Gregg and Judy or Gary and Sandy. I certainly remember DizzyVickie, SweetSue, Jeff, Mel, and Doc.

OT, you've come home!!

Joe

 

DK Vampire and Deedy also met in the chat room and eventually got married.

 

Gary and Sandy got married. Gary had his own site for awhile but that has been gone a couple years.
Sweet Sue and I e-mail occasionally. Her life changed drastically. Email me if you want details Old timer.

 

doc posts occasionally, but not often. Mel is long gone. I often wonder what becomes of folks. Maybe they get tired of posting. Who knows?
Paul

 

I can't believe people met here and married each other!!!!! That is so awesome!!!!
Makes me love this site even more....

 

OT...The forum just recently crashed...it happens about twice a year! Its just getting rebuilt now, and I haven't seen SweetSue back yet or Doc.

Was your name OT back then too? Just curious!

Welcome Back!!
Bergie

 

Welcome Back OT:
I remember the old room - was enough to make me leave... but that is thankfully past.

Ray is working on getting our chatroom back up - it too was a victim of an upgrade/crash.

I don't remember my nick from there - might have been "Bill." Like Bergie, I'm curious what your old nick was??

rev

 

I have to ask. What name did you use then?? Who are you? Do you remember when I first joined? I was still working and could not believe I could be disabled fromthe disease. Foolish me! ???

I have been here since June of 2000. At the time Pat and Nikko were moderators. There were two rooms when I joined - one for newbies and one for oldies. Newbies couldn't post in main room till after ten times. Members were strictly monitored and we were bumped off at the arbitrary and capricious whim of those monitoring. SERC couldn't be mentioned and NO CAPS - remember?? If you posted something and it was held in reserve for a day or so before it could be seen by others. You could never mention any information sources without approval of Pat.

Pat still has an information site (quite good, but complicated to follow). http://www.menieresinfo.com/ If you remember Thom - he has a part in helping pat with his information - or did for a while.

Sweet Sue from Saskatoon pops in here once in a blue moon. Gary and Sandy not only married but adopted two children from Russia. Remember Roblens - (Bob n Fumi) - I miss him and his site. Remember Rebel Jill??

I went with LesnKC for several years and helped monitor that site where many went for a while - it was disbanded last year. I also stayed here when invited back by Ray when he did away with monitors and after getting ousted from chat my first time in. ??? That is where I met a lot of folks who once were here - Bobbie, Karen, OzGreg, Ed, Babs, jackie and a few others. I still keep in contact with some of them.

Cindy, and Doc still pop in on occasion but not seen them since the last crash and redo here.

So do I know you?? I have had the same nickname all these years. You may have been one of those who listened to me whine and cry and beg for help when I first came. I was pathetic. ???
dizzjo

 

well, i've been here on & off since 2001....and like dizzjo, i've always had the same name... so, old timer...who are you? inquiring minds wanna know...

 

Dizzjo,

I was thrown off chat by Pat the first time I tried it out. Pat decided that I was a cyber stalker because I had asked someone where he lived. I was immediately banished, leaving me in a state of mortification for having asked a forbidden question. I had to steel myself to return to site and hoped there were no cyber fingers pointing at me. In fact, I almost never returned. But I realized that there were good people posting, such as yourself and Stefanie from Texas.

But if you were thrown off as well, I can only say that I ended up in good company. Now, I feel better. Somehow my banishment still gnawed at me. But your post has healed my memory. Thanks!

Joe

 

Thanks again for those of you who answered. I'm afraid I was a non entity on the board at that time. I used the name "paisley" and posted very infrequently. I used a different username this time as I was sure no one would remember paisley!

I was in a real bad place with meniere's as well as other issues nine years ago. I was in no position to help people at that time, I was badly in need of help. I recall so many wonderful people. But I also was banned (and devastated by it) because I asked about SERC. I'm Canadian and was under the mistaken impression that because it was legal and widely used here, it was ok to mention it. Pat thought other wise and banned me. You're in good comapny wobbles!
I just didn't have the emotional strength to re register and try again so I lurked for awhile and then circumstances kept me away from the internet for a long time.
I don't want to intrude on any of those folks, especially if they have decided to move on. I was merely curious and a bit hopeful to see if they were still here. I have had a major turn around for the better and wanted to give back some of the help that was given to me back then so I went searching a couple of weeks ago and came across this site.

Dizzjo, thatnks for adding a few more names. LesinKC was one that was so kind to me. I wish I could say I remember you, but I think I may have gotten the boot before you joined in 2000. I joined in 1998 and probably lasted less than a year. You say you were pathetic--- don't beat yourself up. I was in such a terrible state I couldn't handle being banned. I wish I could have a wee chat with Pat now!!

Gotta go. Thanks all for the trip down memory lane. Take good care of yourselves.

 

Oh my goodness - I don't really remember you but Les and I are quite good friends (cyber speaking) and she is wonderful. I also had my first big attack in 1997 that finally got attention. I lurked a long time before I got brave enough to join and that was when I was facing disability that I finally joined.

Remember Dannygoodaswine? He is the one who wrote me about several people to talk to. I think we could see everyone's e-mail addy then - or at least I could see a few that I felt like I trusted enough to write to and other not so much. Gary (flyboy) was a really good friend and help for me then as were several others.

Yep, my first time in the chat room and I was banished from even posting on the forum Had I not already had a few to e-mail with I would have given up entirely. I am glad Joe and you both were booted off - I am indeed in good company. When it happened to me is how I met so many other really nice people who were banished. I was one of the banished that accepted the invitation to come back when Ray sent out the invite and I have been here ever since.

How funny to recall that Joe and I were banned during chat. I had never used chat before and I had no idea what I was doing or what I was supposed to do and I was poking buttons making noises and doing weird things with all the toys there. No one gave me any help about how to use chat. I had absolutely no idea how to use chat. I was not only banned from chat but from the forum for a few weeks. I kept writing Ray begging him to let me back and he did once he "fixed" things.

In the mean time I had joined with Les and her site and she had Ed and someone else helping in chat and the forum and later I helped her. She returned to work after the shunt and was doing so well she didn't have time for the forum and activity was down so we all quit. That was the coping forum. I made a lot of friends there.

Doc was Bud, foto and several other morhps because he also had been banned several times from chat and the forum but kept coming back. Bless his little heart. There for a long time just Doc, Cindy and I were in chat.

Welcome back anyhow, even if I don't remember you. There were several there (here) who were such big helps for me.

Joe If you see this - I had no idea that a great guy like you also got kicked out from chat. I would have fessed up years ago had I known I wasn't alone in that. LOL I am glad you feel better now about being banned too.

I still have Stephanies e-mail and bayoubabes e-mail and I write to dizzydolly and Bobbie and several others whose nicknames are just a memory. I have a few addresses but we have fallen out of touch. Do you remember globug? she has changed e-mails now and I have lost touch with her. She would come back infrequently.

One reason I stick around here is because I was so desperate and sick all the time when I first came. I got so much help and felt so comforted when I found out that I was not alone and after I finally accepted the disease and found there really could be a remission, I wanted to give others hope too. So that is why I stayed - I hoped to be able to give others some information, support and hope.

I had (in the past) so many days when I just literally prayed that I could die with this and be done with it. Fortunately - I survived, was allowed to keep living and still have the big fat dumb disease but been in remission of attacks for over 4 years.

I hope you will stick around and tell us more about your own journey. The newbies here really need those of us who have survived it and currently in a better place, have something to hang their hat on.

Ray has been great through the years and has taken good care of us. Everything is better without monitors, for the most part. I wish more of the old times would come back and visit.

 

So very true Dizzjo - thank you to everyone who has stuck around (or come back) over the years....I'm so thankful for every one of you.



Amethyst

 

Hi dizzjo,
I suppose I was in my computer hiatus when Ray invited people back. Either that or I was so bad I didn't get the invitation. I do remember globug. I chuckle at doc and his various nics. I wish I could have done what he did.

After being booted by Pat I decided to go it alone as the experience was not conducive to healing.

I went through a period of pure fear of having attacks in public. I had been taken home from work so many times that I wanted to quit my job. It was so humiliating. A very supportive family kept me sane. The dr gave me Paxil for agoraphobia. I hated the side effects so I gave myself a pep talk, went off the Paxil, went back to work.

After three years of hell, the SERC dosage was increased by a caring ENT who would not let me give up and my whole world changed. The vertigo went into remission, I learned to cope with the hearing loss, learned to ignore the tinnitus. A very good friend of mine became extremely ill with breast cancer and I got a whole new perspective on my affliction.

I don't mean to minimize the suffering and hell we Menierians go through. I don't believe in comparing pain, but my friend's cancer just gave me a much needed attitude shift.

Now my crappy days are few and far between and I just accept them as part of who I am now. I also accept that I have poor eyesight, short legs, and I can't carry a tune in a bucket. It's all part of my charm!

Life became much more enjoyable once I realized that it is what it is and I can rail against it ineffectually, or I can roll with the punches. I believe that a positive attitude goes a long way in coping with Meniere's. However, I acknowledge that we are all different and that some suffer with these symptoms more than others. There are so many variables that it is difficult to come up with a forumla for coping that will work for all.

I plan to stick around and give hope to others. I can't imagine people being more down and out than I was and if I can crawl out of the black hole, then so can others.

Keep on keeping on!

 

Hi Old Timer!

Joyce that is why you will always be special to me!

Old Timer (I have visions of Walter Brennan hobbling around - LOL) That is why I'd love you to add your input and positive influence to (or back to) this forum. It is wonderful to hear the good things as well as the bad and you can remember bad but are doing good. Yes I ramble! LOL I appreciate all!

 

Hey oldtimer - I am glad you are going to stay.

I think many of us came here at the worse time of our lives. Your own trip sounds all so similar to my own. You are so right about putting things into perspective. I had a friend and neighbor die of cancer a couple of years ago. Here she felt bad for me with what I had and I could not get over how she was in such a worse place than me, yet feeling empathy for me.

I am glad you shared your story - you made it short, but effective. I am sorry you ended u going it alone but at least with supportive family and that is important. Like you, I was being driven home from work quite often, and soemtimes shortly after I got there, when all things that started out seeming good, turned on me.

I think summing things up by saying we all learned to cope is very good.
I love your own attitude - you have accepted things and redefined what your normal is, much like the rest of us. Life is still good. we still have a contribution to make.

Carol - You are too kind. Look how far you have come. I think it is amazing how we all really are supportive of one another. That alone keeps me coming here.