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The intentions of the original post

Posted by Robin on 4/29/99 at 00:00 (006376)

I have been on this board since November. Frankly, I find myself missing some of the older 'veterans' who were posting when I first found the board. Becky was on a lot, and Jude too, and Debbie and Alex and DaNita -- and there was a temperance and compassion and patience in those days that doesn't always seem as prevalent now as we would all like.

I truly do not believe that Fred posted with the intention of being rude or sharp or nasty. Personally, I didn't sense any of that. Forgive me if I'm wrong -- but I believe his intention was to help people to research on their own, and to invest time in themselves and finding their own approaches -- Scott certainly provides a fertile field, and I have referred many people to his site.

Personally, I find myself generally not responding to people who post right away with general questions that are addressed throughout Scott's site.. I think Fred's premise is that these folks may not receive nearly as much response and help and advice as they would like -- simply because their questions ARE answered in various other places, archived and current. And because new people find this site every day.

When I first found Scott's main document and this message board, I was just astonished that there were so many other people like me. I had no idea. I remember spending hours reading and searching and learning. It was a comfort to know I wasn't alone, and I considered the main site a great 'find' in terms of information and ideas, ammunition I could use as I would weave my way throughout the medical world in search of relief. In the first few weeks, the message board took on incredible importance in my life. Maybe my family and friends didn't understand -- but people on the board understood.

As I have learned to manage (and live with) PF, I rely on this board less for daily sustenance. I do, however, rely on it as a place where people understand what I mean when I say 'my feet hurt.' We're not talking about a toe cramp here. We're talking about unmitigated agony in some cases, and sometimes people who genuinely wish they were dead. I've said in the past, and I continue to say: For something that's not a life-threatening disease, PF is the worst thing that's ever happened to me. It affects 99% of my life, every day of my life. And it has changed my life entirely, in ways I don't like. And I'm often afraid that it will never change back.

Can we not PRESUME each other's best intentions, even if they don't always come across the way we want? The world is so full of people who don't understand that PF can rob you of the best parts of life. The world is already so full of people who make wrong judgments of us, who whisper unkind things and think we're lazy or sluggish or aloof or anti-social -- when all the time, we're in pain. We're simply not able to do what we would like to do, and used to do. And sometimes we are thought poorly of for that reason. Can we not treat each other with exceptional kindness and unparalleled compassion, giving each other the benefit of the doubt at every turn? Can we not trust that everyone MEANS well, even if we don't all say it well all the time?

I read this board a lot -- but I post seldom these days. I hope this board remains a source of understanding and patience for all who find it and read it, and for everyone who posts, whether or not we all agree with what's said or how it's said. That's what makes this place different from the world I come here to escape.


Re: The intentions of the original post

Bea on 4/29/99 at 00:00 (006380)

Beautifully said Robin. I find myself getting irritated as I read questions about subjects that have been dealt with time & time again. If I read one more question aout why Cortisone is bad I could scream. I too am very thankful to have found this site & to have it filled with the same questions by people who are too lazy to read the site is very aggravating. I'm am not as subtle as you are and as always a gentle touch is really better but after suffering with this condition for so long my nerves are shot. Thank you for such a nice letter explaining how we old times feel and in such a nice way.

Re: The intentions of the original post (Bea)

kelus on 4/30/99 at 00:00 (006388)

So this site is really just for the old timers?

I can't be sure, but I bet you probably duplicated some questions when you first found this site.

You are right, nerves do make you edgy, but maybe we could hit a punching bag or something instead of make others feel unwelcomed.

kelus


Re: The intentions of the original post (Kelus)

Bea on 4/30/99 at 00:00 (006398)

I didn't say just for the old timers. I said the in order for the site to be useful to old timers messages should for the most part be new info that is not available in other places on site or in previous messages. Maybe the new people don't realize the wealth of info available if they just look. When I found this site I read everything, I was so happy to find some info. All I am saying is 'Give the site a Chance' Sorry I offended you.

Re: The intentions of the original post

Bea on 4/29/99 at 00:00 (006380)

Beautifully said Robin. I find myself getting irritated as I read questions about subjects that have been dealt with time & time again. If I read one more question aout why Cortisone is bad I could scream. I too am very thankful to have found this site & to have it filled with the same questions by people who are too lazy to read the site is very aggravating. I'm am not as subtle as you are and as always a gentle touch is really better but after suffering with this condition for so long my nerves are shot. Thank you for such a nice letter explaining how we old times feel and in such a nice way.

Re: The intentions of the original post (Bea)

kelus on 4/30/99 at 00:00 (006388)

So this site is really just for the old timers?

I can't be sure, but I bet you probably duplicated some questions when you first found this site.

You are right, nerves do make you edgy, but maybe we could hit a punching bag or something instead of make others feel unwelcomed.

kelus


Re: The intentions of the original post (Kelus)

Bea on 4/30/99 at 00:00 (006398)

I didn't say just for the old timers. I said the in order for the site to be useful to old timers messages should for the most part be new info that is not available in other places on site or in previous messages. Maybe the new people don't realize the wealth of info available if they just look. When I found this site I read everything, I was so happy to find some info. All I am saying is 'Give the site a Chance' Sorry I offended you.