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Posted by pinksharkmark ( on May 23, 2000 at 02:31:43:

Did the title grab your attention? Good!

It's been a year, more or less, since I looked at this wonderful website. I noticed some changes right away, some good, and some that are kind of puzzling to me.

The most apparent change was the vastly increased number of daily posts. Great!, thinks I, the more people that have discovered this board, the better! After a couple of days of plowing through the recent archives, I am not so sure anymore.

There are a quite a number of people I have referred to this site in the past, either for help with their headaches or just to try to give them a feel for why I really can't come out and play (or work) right now. I thought that rather than try to describe my plight, I would let the more eloquent posts and links at the site make my point for me. Some people have a way with words... others... oh, not have way, I suppose. I am one who is not particularly good at expressing myself on paper.

Anyway... I now wonder what they might have thought of some of the more.... ummmm.... "flamboyant" posts that seem to be proliferating these days.

Don't get me wrong, I know that we all try to handle the beast in whatever way we can, and I can vent with the best of 'em, but to me it just seems some of these posts are a bit much. The language in the titles is kinda extreme, for one. I can handle cuss words pretty well, but some others might get offended and miss some valuable info. If you really MUST get crude in order to feel better, in my opinion it is probably better to do so in the BODY of your post, not in the TITLES.

I have been trying to get ANYONE with the least bit of interest in our condition to visit this board, including my neurologist, who lives in Canada, (I live in the Dominican Republic) and some international journalists I have met here. (I figure the more exposure this horrible disease gets, the better.)

I'm not sure what their impressions might have been. I will keep visiting, because I will put up with the crap in order to glean anything helpful that might appear, but why would anyone who wasn't a clusterhead wade through it all?

It is also quite apparent that there are several cliques who enjoy each others company, and are delighted to send multiple posts on a daily basis on any subject under the sun. While I don't think that there is necessarily anything really wrong with that, it does sometimes tend to make the forest hard to see for the trees :)

Perhaps a lot of those more personal posts might be better handled through e-mail rather than in such a public forum. For example, I belong to a group of backgammon players, and we set up for ourselves a kind of group e-mail service at It might be of interest to some who post here... it is really quite easy to set up, and it is free. I am sure there are other services like onelist.... is another that springs to mind. Maybe the chat room might help too, although for some reason it crashes my Mac every time I try to get in there, so I don't know how often it is in use.

I also notice that some frequent posters who were here a year ago are no longer posting. While I hope that they are in remission and just taking a break (like I did) I can't help but wonder if they just got disturbed at the direction the board was taking and gave up. I know that some of them had a lower tolerance for endless flaming and bad language than I do. Whatever happened to Barbara D, for example? My search of the archives shows her as last posting in October (although I admit that I haven't scrutinized EVERY single archive yet). Barbara D was a warm, supportive person with tons of info and experience.

I have deliberately left my e-mail address here, so I fully expect I will get mass quantities of flames and abuse for bringing these points up, but please accept them in the spirit I intend them... I think this is a TREMENDOUS resource for clusterheads, in fact the BEST resource by far that I have encountered in my almost two decades of living with the beast, and I want to see it remain as effective as possible for as long as possible. I feel that with just a little bit of self-restraint and courtesy to others, the board can be as good or better than it was this time last year.

I can't believe I am the only one who feels this way.

Oh, ratz! There's one on the way now... sigh. Guess I'll post this, pop a Zomig, and go roll around on the floor for a while before the meds kick in.

Please, anyone who feels that this post is meant as a slam against you personally, read it carefully, re-read it even more carefully, and reflect on what I'm trying to say for at least half an hour before you rip my hide off, okay?

Pain-free nights and days to you all!

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