Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Dear , Most of what you said was " greek to me " except your offer of help. We seem to be the largest e mailing list on the entire WWW- now 105 members actively using it. Currently there are two other people who help moderate - reading and approving the messages and passing them on through the list. Of course, once summer starts and we all begin to take vacations, another moderator would be helpful. I do not understand how to set up a web page- I tried learning HTML, but had no luck. It would be great to have a web page strictly for PA with up to date info on the medications and treatments, all the diagnostic criteria, the five types, doctors who come highly recommended, the list goes on and on. If you could assist that, I believe it would be a worthwhile project for our entire group to contribute to. Let me know what you think. By the way- my husband of 20 years was born and bred in Margate New Jersey! Had you heard about the get away weekend up in Bridgton Maine - 35 miles outside of Portland put on by an RA sufferer? They are having it at a lakeside resort owned by an RA'er (they had it last year too), beginning June 11 for a week. I am going for Friday-Sunday, and am hoping to meet some of you others- especially East Coasters and Canadians - no Excuses!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 --- CTNATIVE@... wrote: > From: CTNATIVE@... > > Dear , > > Most of what you said was " greek to me " except your > offer of help. Hmm -- sorry about that. This is what it comes out to: 1. I have worked on listservs and webpages professionally for over a decade (on the SGML before there was HTML). 2. I like the list and like what you have done with it and would be happy to help in any way. I'll help " vet " (edit, or forward) messages for you when you can't, do database maintenance, etc. 3. I run the webpages at the university I work at and can put up a PA-L webpage. There are other sites that include PA information, some of them good and others somewhat misleading. I think it would be wonderful if *we* put up a site. I'll create a mockup and post the URL (address) to this list. Then people can write me with suggestions, edits, etc. When people on the list are satisfied we can put it up and I'll maintain it from here. As noted in the excerpt below I think it important that this not be " my " thing but a group project. If this listserv has proved anything it is that we are stronger together than as individuals! People can feel free to respond to me on list or off. My two addresses are listed below, as is my office phone. Professor Alan Instructional Technology, IRT The Paterson University of New Jersey, Wayne Ph. 973.720.2659; raharris@... raharris@... >It would be > great to have a web page strictly for PA with up to > date info on the > medications and treatments, all the diagnostic > criteria, the five types, > doctors who come highly recommended, the list goes > on and on. If you could > assist that, I believe it would be a worthwhile > project for our entire group > to contribute to. _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2000 Report Share Posted September 8, 2000 I am not the most active " poster " but I credit this list with allowing me to be able to work with and understand this disease enough to be able to CHOOSE not to medicate and attempt to start my family. I could never have done that without the support of a large resource of people who have experience with the disease, the medications and the side effects. I have not met a doctor yet with much experience with PA so I was able to turn vague replies from her into actual information from all of you. Is this a list for people with PA? You bet. It would help certain people to remember that this disease affects much more than our physical health. You all have brought me out of depression the likes of I had not known. Medical advice is available anywhere but a large group who knows firsthand about the effects of PA in our lives is a blessing we are lucky to have. Of course I want to know about your doctor trips, field trips, kids report cards, dog bites, your thumb that hurts, your bad day, your good day...... I don't think I need to go on!! If you want only medical advice, go somewhere else. This family of PAers has life experiences to share. Gillian-don't go, we really NEED/LOVE you! You make us laugh out loud while sitting alone and thats the most potent medicine of all!!!! Sarendra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Hello everyone, To Roy and ; Amen. I enjoyed the list more before it got so long. I do scroll past the ones I am not interested in but it was getting to be a real chore. I've been with the list since there were less than 40 PA'ers and I hated to drop it. Today's list was a nice change. One thing that really makes the list long is when people responding to a particular email attach the entire original message to the end of theirs. I find this tedious to scroll through. It's not necessary and I wonder if people know they can select to not quote the original message when replying. I read the entire list today. Thanks to Patty for posting that information about rheumatologists' evaluations of drug effectiveness. Take care, Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 goldmatrix wrote: > ... I enjoyed the list more before it got so long. > <snip> Today's list was a nice change. , Perhaps you'll help me by explaining just what it is that you, Roy and are expecting from the list? It looks like it's OK for some people to share some OT things like the kitty image but not for others to share their OT writings. I'm getting confused regarding what all that criticism was about. > One thing that > really makes the list long is when people responding to a particular email > attach the entire original message to the end of theirs. I find this > tedious to scroll through. It's not necessary and I wonder if people know > they can select to not quote the original message when replying. That's true, but some of these people truly don't know all the nice functions on their computers yet. If I hadn't had two sons who keep me set up and patiently teaching me, this grandmother wouldn't know either. Surely that shouldn't test our patience *that* much. When I don't feel well enough to subscribe to the individual e-mails, I un-sub for awhile rather than criticize the individual writers. Part of " support " is patience with each other. That's my personal opinion, of course. Patty B in the Pineywoods of East Texas where the leaves have blanketed the ground. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Patience...I whole-heartedly agree with you on the patience thing...actually at the moment I'm a little scared about one thing... Memory...my lack of...is really scaring me...is this the PA, the combination of medications or what? An example, for a couple days in a row now I have written and SENT emails to friends & family members and later in the day or week...they mention my email and I am drawing a complete BLANK. An example, my son injured his knee in his football game & I sent an " update " out this morning which was kind of long & detailed...and TONIGHT when my friend called to ask me about him, I did NOT remember that I had done that. This may be " OT " , but I hope someone who has the patience to read it can tell me...is this happening to anyone else? I guess the GOOD thing is that when I read this tomorrow it will be totally new to me...LOL!! Thanks for listening... shelley, Monroe, MI Quote Link to comment Share on other sites More sharing options...
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