Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 Standards and Policies for the Lupies Yahoo e-Group A Lupus Support Group with the Loving Hearts of Sisters and Brothers, the Courage of the Wolf, and the Strength of the Pack. First we want to "Thank you" for your interest in joining "The Lupies" support group. Diagnosing lupus is like trying to hit a moving target while riding a bucking bronco. Living with it means you are continually on a roller coaster ride. You don't know how you're going to feel minute to minute, day to day. Living with lupus has been likened to "living with the wolf". Like the wolf, Lupus is hard to capture and tame. No matter how well you think you have Lupus under control with medications, sooner or later, "the wolf" eventually reaches out and takes a bite out of your life. Like wolves, each lupus patient is different. Some have few symptoms, and have an outward appearance of being healthy. While others have so many symptoms of the disease, they feel like the proverbial "road killed wolf". Being diagnosed with Lupus no longer deserves the "death notice" disease as it once did. Now the disease is better understood. It is more easily diagnosed with newer blood profiles thus enabling treatment to begin sooner lessening the damage done to internal organs. Physical treatment is essential, but so is the support needed to deal with the trials and tribulations of Lupus. We here at the Lupies are a tight knit group of people, who know each other by name. We would be happy to have you as a member of our group. At Lupies, we are here to support each other in times of darkness, and to share smiles when we usually need them most. We here at Lupies have a web site that contains a great deal of information on lupus, lupus treatment, drugs, tests, and some of the secondary diseases that seem to pop up along with lupus. LUPIES Web Page http://www.itzarion.com/lupusgroup.html Contents General Message Policy Lupus, Religion, and Politics Do Not Mix Subject LinesSending "Forwards"Merchandising Items Advertising Other Groups Have you gone missing?E-mail Options E-Mail Problems Lupus Links General Message Policy We can get naughty at times, so be forewarned! There may be adult related messages at times. The subject line of your message should indicate any adult content. Example: Joke (Adult Content). To help keep us a tight knit group of people, all messages are moderated when you FIRST join. After we get your info then we unmoderate you. Any correspondence of degrading or accusing matter will be deleted and the writer warned, as no personal attack of any kind will be tolerated. We respect each other's feelings here. We will not attack another person here. We will not debate here. We will discuss and respect the areas we do not agree on by focusing on what we do have in common -- Lupus. This warning includes links to Pornographic sites as these links set cookies on your computer enabling the pornographic sites to bombard your email with porno publicity. Any member including these links on their messages will be banned from the group. We also need your full name and address. Email the information to: LUPIES-owner Attention: Deanna. We know some people do not like to give this type of information out, but it is for our eyes only. (We periodically snail mail you goodies and stuff) We will not give it out to anyone!! If it would make you more comfortable we will give you our information as well, just let us know. Lupus, Religion, and Politics Don't Mix *** THERE IS TO BE NO POLITICAL or RELIGIOUS DISCUSSIONS ON THE BOARD *** We have found that lupus, religion, and politics do not mix well in a public forum. If you want to discuss politics or religion, feel free to do so in private emails to one another. This may sound harsh, but in the past we have lost members because of discussions over politics and/or religion. All we ask, so as to not upset ANYONE, is to please refrain from discussions on politics or religion on the board please. Thanking your God is fine (i.e., My faith has kept me alive. Thank you God.) ... but turn your email into a preaching email .. and you will be warned and put on moderation. If you continue to send emails that have potential to upset other members, you will be banned from the group. Please, take your discussions off the board and keep them in your private emails. Thank you. Subject Line of Emails When answering a post or email, PLEASE include a sentence or paragraph from the person's post in the body of your reply post. Include just enough information so everyone knows who and what you are responding to. Please do NOT reply without deleting the "original/old" email message, or upgrading the subject line.This one little adjustment will make for fewer digests and much more pleasant reading for those who don't have much energy to stay online for long periods of time. Sending Forwards Emails made from several "forwards" are discouraged on the Lupies message board.In our opening message to all members, we asked when sending messages to the group that "Forwards" be kept to a minimum. That request has been ignored and abused. So a new policy has been instated due to an influx of "Forwarded" emails, some of which have carried computer virii. The Lupies owners and moderators have decided to not allow "forwarded emails" to be sent to the group. Please refrain from sending any forwards to the group. Any trasgressions and you will be warned once and then put on moderation. If the forwards continue while on moderation, you will be dropped from the membership list.If you receive information via a forward from another group or web site that you think would be beneficial to the Lupies group, then copy and paste the information into a new email before sending. Have you gone missing? If you are offline for a long length of time or are ill, please contact the group yourself or have a family member write an email to us. Let us know your ups and downs for the past couple of weeks. Your latest doctor visits/reports, your latest symptoms, medicines, and alternative remedies and results.Let us know how much support you are receiving from family, friends, and such. Was someone particularly helpful? Particularly un-feeling and hurt your feelings? We will jump to your defense and make you feel better right away.This is a support and information group. We will be here for you when no one else is or can. We are in this boat together and will hold each other up emotionally by posting and replying to your posts as soon as possible.Let us hear from you ! Lupies Group Policy on Merchandising "The only items that are to be sold through the group are items on the Lupies site at Cafe Press." LUPIES Store items with the Lupies logo http://www.cafepress.com/thelupies We had to develop this policy as we have had problems in the past with people selling items through the group. We know people mean well by offering the group items at cost, and we appreciate the gesture, but we (the moderators and owner) need to ask you to adhere to policy. If you want to sell or advertise an item to the individual people on the group, contact them privately please. You may leave your web site's URL on your signature line, but no advertisements or "Free Offer" type of message .. just the URL .. we have no problem with that. EXAMPLES: This one is correct: and Jill Doe http://www.doebucks.com This one is not allowed: and Jill Doe Owners of Doebucks Wild Game Emporium For the gaming person http://www.doebucks.com If that URL is not what you need, try this one http://www.doebucks.net This policy is not just towards one person, but is for everyone and is a safeguard for our "Lupies Group" family. If we allow one business to advertise and sell items, then we must allow others. The moderators and owner of the group feel the group has enough problems dealing with life in general; the group doesn't need to have their hopes of a cure dashed by an unscrupulous company taking advantage of the group by advertising "miracle" cures. Policy on Advertising Other Health Message Groups Again, we do not want to deny anyone of information about other health groups. But there will be NO recruiting. If you have your own health group, you may put the URL in your signature line .. but again .. keep it short with no explanations and offers. If you have more than one group, list ONLY the URLs. Please respect these rules. Offenders will be warned by private email. Once warned if messages to the group still contain advertising or recruiting methods, the offender will be banned from the group. Please do not take offense to this request .. and .. we do NOT want you to leave the group. You need us as much as we need you. E-Mail Options There are four email options available to a member of a Yahoo group, such as "LUPIES": 1. Have messages from the board sent as individual emails sent to your personal email address as single emails. This means you will receive lots of emails daily 2. Have a digest (1 digest = 25 messages on one email) sent to your email address. Our group is quite a vocal group so you would receive 1 digest 2-3 times per day. 3. Have NO emails sent to your address. This means you would have to log into the main message board and read the message board on the web site. http://groups.yahoo.com/group/LUPIES/ Click on the "Messages" link on the left side of the screen .. then read .. no emails will be sent to your box .. your box won't get filled up ..you don't have to worry about it .. just go to the site and read when you have the time. Now .. you may get asked for your yahoo ID name and your password .. so be prepared for it. 4. Only get sent SPECIAL ANNOUNCEMENTS. This means you will get NO emails except those marked by the sender as a Special Announcement. To change your options .. go to the main site .. http://groups.yahoo.com/group/LUPIES/ at the upper right hand corner are the words "EDIT MY MEMBERSHIP" Scroll down to "Message Delivery", then scroll down and SAVE changes If you have problems, let one of the moderators know and we can change your options for you. LUPIES-owner E-Mail Problems If you notice you are not receiving emails, go to http://groups.yahoo.com/mygroups You may be asked for your Yahoo ID and password .. once there, check to see if you have a "Bouncing Alert" at the top of your screen. Follow the directions to reinstate your email status. If group messages sent to your email address are returned (or bounces back) to Yahoo! Groups as undeliverable, your Yahoo! Groups account may be temporarily disabled. Messages can be returned for several reasons: 1. Your mailbox may be full -- try deleting messages from your Inbox. 2. Your ISP may have a backlog of email to process -- contact your ISP. 3. Your ISP may be blocking email from Yahoo! Groups -- contact your ISP. (Some ISP's block messages from Yahoo! groups if a large amount of emails begin coming from the group.. the ISP automatically checks and mistakenly believes that you are receiving Spam mail.) In many cases, Yahoo! Groups can automatically reactivate your account once the delivery problem is solved. However, in some cases you will need to manually reactivate your account: 1. Visit your My Groups page. 2. Look for a bounce alert near the top of the page. 3. Click the Alert link to reactivate your account. If this does not clear up your account, contact one of the moderators for the group and we will see if we can fix it. LUPIES-owner Lupus Links Lupies Message Board http://groups.yahoo.com/group/LUPIES/ To Contact the Lupies Moderators LUPIES-owner Lupus Information http://www.itzarion.com/lupusgroup.html Yahoo Groups http://groups.yahoo.com/mygroups Lupus Foundation of America http://www.lupus.org/ All literary works and original artwork by Rion on this page, unless otherwise noted, are the sole property of Sewell. I do not mind sharing but please ask me first. © 1998 - 2004 "Rion" Sewell Email me at brendarion at cfl.rr.com HOME Back to LUPUS Main Page Quote Link to comment Share on other sites More sharing options...
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