Re: Using this list for RA information is getting tedious

[Guest guest]

Apologies. I have probably been a part of this problem. There is a group for

arthritis

sufferers who are pregnant and/or mothers AND there is one for arthritis

sufferers who

have had lap-band surgery. Glad you are trying refocus the group in a kind,

diplomatic

way (i.e. not just griping, but offering suggestions of things we can ALL do to

fix the

problem). Trimming messages is something I tend to forget to do fairly often

and I know I

could do more two-way communication privately. Anyway, I like this list.

Thanks,

wendy from birmingham, AL

[Guest guest]

jack,

You know you are a newbie here...and while I understand you are

seeking info pertianing to your problem...we are a list of

friends...We talk about RA and we also talk about how RA impacts our

lives...that means we talk about other thing other than JUST RA.

If the volume and content of mail is a bother to you may I suggest

going to reading from the ..that way you can decide what

is worth reading and ignorring the rest.

And to suggust that we are posting SPAM....well I am

offended....because one mans trash(SPAM) is another mans treasure.

lastly there are many other RA and autoimmune groups out there maybe

this is NOT the one for you. There is RA-support which is ten times

more active and does have a lady that does research...but again...the

talk about stuff that is not RA related too.

Alan-CD is another group...it is a newsletter group...you do

not have any input...you get send out pertianet info as it comes

out...that maybe more your style...but you can not ask any questions.

Arthritis-Symptom is another group..great group...not always active

though...so maybe the volume of mail there would be for you...of

courese you will not get hardly any research info unless..one of use

that is a member of many of the other groups post it.

Lastly I think you should really take something you posted to heart:

> I've been on other lists including one that had over 1,000 mostly

diagnosed with an illness more serious than RA - the list was

literally life-and-death to many of those on it. I guess that made

those people have a little less ego and a little more tolerance than

most of us can muster.

A little less ego on your part would be nice.

Toni

>

> Hello, RA friends ...

>

> Hope you all are enjoying the holidays!

>

> My subject is about how tedious it has been over the past few

days to try to search this site for pertinent information that may be

helpful to me or watch for questions someone else has that I might

answer.

>

> I get this site in list form, as I'm sure most of you do - that

means I receive a periodic update of all the emails either after a

certain time lapse or some minimum number of messages. I value your

help as a resource.

>

> The last few days there has been so much non-relevant chatter

that it's hard to pick out the things that are important to

management of RA.

>

> I've been on other lists including one that had over 1,000 mostly

diagnosed with an illness more serious than RA - the list was

literally life-and-death to many of those on it. I guess that made

those people have a little less ego and a little more tolerance than

most of us can muster.

>

> I have several suggestions which should help us:

>

> -- keep on-topic or consider whether your email should be

cancelled

>

> -- 2-party extended exchanges are better done directly privately

except where the exchange is about RA and its management

>

> -- When responding to someone else's post - either start a new

email or trim the previous post before just hitting reply. This

keeps us from have to page thru seemingly endless repeats of threads

we've already read.

>

> -- don't kid yourself that what your sending is not spam if it's

pushing some other group or some religion or some political view or

just your own importance - if your sellin', it's SPAM

>

> Thanks to MTX and folic acid, I have a very busy life with many

interests - I hope to stay on this list and learn and contribute for

at least as long as I have RA and I hope it continues to be a lean,

to-the-point, friendly, tolerant, and useful - to myself and all my

new RA friends.

>

> Best wishes for improving health in the coming year.

>

> Jack McGuire, Carlsbad CA

>

>

>

>

>

>

>

>

>

> ---------------------------------

> for Good - Make a difference this year.

>

[Guest guest]

Jack, while you have made some good points I think you go too far with them. As I recall the recent tedious exchange is in a post marked OT to show that it is off topic. Posts like that are easy to ignore if you are only interested in RA information and I encourage use of that flag for things that do not relate to RA. I have no problem with them being posted when this flag is used.

When responding I usually retain the one post to which I respond but delete all others. Also I make my response before the post I retain so it is easy to see what is new. When the responder places their input below or mixed with previous messages I usually ignore the whole thing instead of trying to decipher what is new. I do keep the previous post so the reader can see the reason for t he response if they are interested. Often a response is puzzling if you don't have a way of putting it in context.

Many want to see things other than strictly RA on a message board because they don't want to define themselves by their illness. I have no objection to extraneous posts as long as they are identified as OT.

I agree that this is a message board, and not a chat room and should not be used to chat.

Jack, I hope you will bear with us because there is a lot of good on this (or other) message boards and a message board cannot satisfy everyone. God bless.

----- Original Message -----

From: Jack McGuire

Rheumatoid Arthritis

Sent: Wednesday, December 28, 2005 8:20 AM

Subject: Using this list for RA information is getting tedious

Hello, RA friends ...

Hope you all are enjoying the holidays!

My subject is about how tedious it has been over the past few days to try to search this site for pertinent information that may be helpful to me or watch for questions someone else has that I might answer.

I get this site in list form, as I'm sure most of you do - that means I receive a periodic update of all the emails either after a certain time lapse or some minimum number of messages. I value your help as a resource.

The last few days there has been so much non-relevant chatter that it's hard to pick out the things that are important to management of RA.

I've been on other lists including one that had over 1,000 mostly diagnosed with an illness more serious than RA - the list was lit! erally life-and-death to many of those on it. I guess that made those people have a little less ego and a little more tolerance than most of us can muster.

I have several suggestions which should help us:

-- keep on-topic or consider whether your email should be cancelled

-- 2-party extended exchanges are better done directly privately except where the exchange is about RA and its management

-- When responding to someone else's post - either start a new email or trim the previous post before just hitting reply. This keeps us from have to page thru seemingly endless repeats of threads we've already read.

-- don't kid yourself that what your sending is not spam if it's pushing some other group or some religion or some political view or just your own importance - if your sellin', it's SPAM

Thanks to MTX and folic acid, I have a very busy life with many interests - I hope to stay on this list and learn and contribute for at least as long as I have RA and I hope it continues to be a lean, to-the-point, friendly, tolerant, and useful - to myself and all my new RA friends.

Best wishes for improving health in the coming year.

Jack McGuire, Carlsbad CA

for Good - Make a difference this year.

[Guest guest]

,

I enjoy your posts...imagine before you and I started posting about

lapband I am sure there were members that had no clue about our

choice of weightloss option. I can't tell you how many times I have

searched back because someone has mention something that has helped

them and now I would like to try that. Many times its not directly

RA related.

We are NOT our disease...but we are the sum of all out experiences.

So we are mothers, fathers, we have jobs or not, we celebrate births,

marriages and for some divorces. We are all in different stages of

out lives. We talk about daily life...its RA that has brought use

here as a group...but life is more than just RA talk.

Secondly, this group has been running this way for quite some time

just fine...why should we change for one person with a " snotty

attitude " that they don't have time to weed throught our posts? Keep

in mind he found us...we did not go looking for him. When in Rome do

as the romans do..if you can not..well don't let the door hit you

where the good lord split you on the way out!!

People need to know that RA is not the end of life...life moves

on...we have kids some of us return to work or find new careers. We

need to know what works and what does not when it comes to

meds,therapies, surgeries and suppliments.

Toni

>

> Apologies. I have probably been a part of this problem. There is

a group for arthritis

> sufferers who are pregnant and/or mothers AND there is one for

arthritis sufferers who

> have had lap-band surgery. Glad you are trying refocus the group

in a kind, diplomatic

> way (i.e. not just griping, but offering suggestions of things we

can ALL do to fix the

> problem). Trimming messages is something I tend to forget to do

fairly often and I know I

> could do more two-way communication privately. Anyway, I like this

list. Thanks,

>

> wendy from birmingham, AL

>

[Guest guest]

I agree with others who suggest logging on to the site. That's what I do

and if I don't want to read multiple posts about topics that do not pertain to

me,

I skip them.

, you are pregnant and have RA and I for one am glad to see your

posts and how this disease will effect (hopefully not at all!) your pregnancy.

I think it was Toni who said we are not our disease and she is right and I

therefore welcome good news, humorous posts or even pictures. Those who

do not can simply choose not to read those posts.

-- In Rheumatoid Arthritis , " R. Peek " <

wendyhollander@y...> wrote:

>

> Apologies. I have probably been a part of this problem. There is a group for

arthritis

> sufferers who are pregnant and/or mothers AND there is one for arthritis

sufferers who

> have had lap-band surgery. Glad you are trying refocus the group in a kind,

diplomatic

> way (i.e. not just griping, but offering suggestions of things we can ALL do

to

fix the

> problem). Trimming messages is something I tend to forget to do fairly often

and I know I

> could do more two-way communication privately. Anyway, I like this list.

Thanks,

>

> wendy from birmingham, AL

>

[Guest guest]

Hi Jack,

Good tips for all, but to make things easier for yourself you might

read the messages by going to the group homepage

(Rheumatoid Arthritis) and

reading directly from there. You can quickly and easily see all the

messages in order; by time posted or by thread. I do this, as I

could never handle the email in my inbox whether it be digest or as

posted. I prefer to do this always, and it sounds like you would

benefit from it as well.

I think most of us in here enjoy the friendly exchanges

and " friendships " that have been made by the posts back and forth. I

mostly lurk myself, picking up info here & there and sharing when/if

it's relevant. I would hate to see that part of this site go and

become a medically sounding boring bunch of moan & groaners. I much

more rather keeping up with the gentle hugs & get well soons that

make this group a group.

hope that helps

>

> Hello, RA friends ...

>

> Hope you all are enjoying the holidays!

>

> My subject is about how tedious it has been over the past few

days to try to search this site for pertinent information that may

be helpful to me or watch for questions someone else has that I

might answer.

>

> I get this site in list form, as I'm sure most of you do - that

means I receive a periodic update of all the emails either after a

certain time lapse or some minimum number of messages. I value

your help as a resource.

>

> The last few days there has been so much non-relevant chatter

that it's hard to pick out the things that are important to

management of RA.

>

> I've been on other lists including one that had over 1,000

mostly diagnosed with an illness more serious than RA - the list was

literally life-and-death to many of those on it. I guess that made

those people have a little less ego and a little more tolerance than

most of us can muster.

>

> I have several suggestions which should help us:

>

> -- keep on-topic or consider whether your email should be

cancelled

>

> -- 2-party extended exchanges are better done directly privately

except where the exchange is about RA and its management

>

> -- When responding to someone else's post - either start a new

email or trim the previous post before just hitting reply. This

keeps us from have to page thru seemingly endless repeats of threads

we've already read.

>

> -- don't kid yourself that what your sending is not spam if it's

pushing some other group or some religion or some political view or

just your own importance - if your sellin', it's SPAM

>

> Thanks to MTX and folic acid, I have a very busy life with many

interests - I hope to stay on this list and learn and contribute for

at least as long as I have RA and I hope it continues to be a lean,

to-the-point, friendly, tolerant, and useful - to myself and all my

new RA friends.

>

> Best wishes for improving health in the coming year.

>

> Jack McGuire, Carlsbad CA

>

>

>

>

>

>

>

>

>

> ---------------------------------

> for Good - Make a difference this year.

>