|
|
|
Reply
| |
Our Mission
We exist to ensure that any person who endures the pain and agony of RSD or related illnesses does not suffer needlessly because they do not have anyone that validates and understands their pain. By providing an avenue of support readily available to these individuals and their family and caregivers, we will enable them to vent frustrations, find support, encouragement and knowledge that they may gain the valuable tools necessary for proper and adequate pain treatment which will allow them to lead productive and meaningful lives. | | As you all have probably heard by now, MSN Groups are closing. This is a terrible kick in the butt for all of us. However, I have made the decision to do whatever I have to do to keep our group open in whatever way possible. The group will move to a different location as soon as I find a suitable place. The place that MSN has picked for use to go really sux. It is not a group for us as we know our group, it is simply a poor copy of Live Spaces where anyone on the web posts at any time if you want to have the group public and listed so people can find you. But please don't worry, I have some ideas in mind I just have to do some checking and I received a couple of emails in response to my letter that I posted yesterday on the forum that you read here on the General Board. If you will please all send me your current email address I will make certain to update you when I find that location. I am looking for a location now. During this transition I will not be posting any more medical information on this board but will be answering posts and the chat room will still be available. I do hope that none of you decide to jump ship, let's not panic. We have been and can be a strong group. I need to know that you are all still with me and I will continue to work as hard for you as I have been. If you wish to request special chats please do so as I will have my email box open to alert me that you've requested it. This is terrible as I feel MSN groups happen to be the best forum for us but we do have to roll with the flow. You all are my family and I would hate to lose any one of you. I am disgruntled and angry about this as they have often times left us out of the circle when they could have fared much better if they had managed it better. Their reasoning was they want to keep us up with the times and offer us the latest in technology. But they have actually removed all of the capabilities of what the groups offered and partnered with a site that offers nothing but a personal site page as far as I can see. I started a dummy site yesterday to get a feel for it and I have to be some technology master to attempt to build what we have here and lo and behold sometime during the night I have already received some spam and other junk! I am so un-impressed! You can send emails to me here anytime: We have a promotion site set up on yahoo that sits at the top of the listings already and that site is: RSD, Chronic Pain and Depression. The word gets out that way fairly well as I pay a promo company to do that. Fortunately I can take our chatroom with us and we can enter through my paid sites. One way or another I will find something that keeps us together. Love, Summer | | Back by Summer é HTML, Tiles, Info Copyright © 2008 RSD, Chronic Pain and Depression and Affiliates - Exclusive of Use - Page is not Linkware or Shareware - Updated October 2008 | | | | | | | | | |
|
First
Previous
2-9 of 9
Next
Last
|
Reply
| |
I'm There Ed! Love, Summer |
|
Reply
| |
I know I haven't been online much these past few months but dealing with new medical issues. Then I come back and see this from MSN - just keep me posted and I"ll be right there -- now I have to look into something fo rmy own group as well so if you find one please pass it on. peace, hugs and lots of love Caryn |
|
Reply
| |
Hi Caryn,
Isnt that a kick in the pants too! Its a real shock and we have been searching for a couple of days now. I am absolutely no help to Summer because I know nothing about those things. I am trying to catch the board but I dont have near the amount of abilitys that Summer has and it gets away on me bad.
I will let Summer know when I talk to her in the morning that you too are looking. I know she has the name of your group and that she wants to stay in contact with yours too so dont forget us when you move please. Send your email address to the managers email here so I can send you my private email please so we can be sure to stay in touch ok! I fear that this move is going to really cause a mess in the groups but we will do our best.
Its got Summer upset and I understand that as she is really under the gun because I really dont know what I am doing. I am so lost with things on the computer. I feel so bad that I didnt learn more so I can help her some when we have to move. Melissa will be in finals and is working so her time is very limited and tries but she only has a couple hours a day at home. We knew that she would be limited when she started at the university and she has a real long drive 3 days a week for some block classes she takes. But we will make it through one way or another. I know Summer has found a couple of alternatives and is exploring them right now. Nothing is carved in stone right now and she is a bundle of nerves.
Take care sweetheart, I really do hope that your health problems are getting themself straightened out. Its been a while and I was getting worried about you! I have really missed you alot.
Hugz, Normalee |
|
Reply
| |
HI EVERYONE! I AM SORRY I HAVEN'T BEEN ONLINE IN A COUPLE OF WEEKS BC I WAS IN THE HOSPITAL AGAIN :( I AM HAVING A TERRIBLE TIME GETTING ADJUSTED TO THIS FEEDING TUBE. THE NURSES AND DOC SAID IT WOULD BE HARD ON ME BC I HAD BEEN MALNOURISHED FOR SO LONG, BUT I DIDN'T KNOW IT WOULD BE THIS BAD! I AM SORRY TO HEAR ABOUT MSN AND THAT EVERYONE IS VERY BUSY TRYING TO SET UP A NEW SITE. I WILL KEEP YOU ALL IN MY PRAYERS :) GOD BLESS :) KELLY |
|
Reply
| |
Well hello my little sweetheart, I am so sorry you've been under the weather. Here's a nice hot cup of tea for you with lemon and honey . The weather here has been terrible, maybe you're just feeling bad for me huh! So sweet. I have my new group set up and am ready to transfer files and members, now the big job is beginning! In a bit I will be sending the mass emails. I will be able to move all the memberships over there so you all will be able to come right over without having to create a site or anything like Multiply has everyone doing. I elected not to go with Multiply or anything like that. I don't think that every member wants to have to create their own site in order to be a member like it's required at all the other places I have checked out or heard of. That is asking a bit too much. It took me over a week to check out all the sites and try to set up a dummy group at all of them and when it frustrated me to no end at each one, I threw my hands up in despair and went home to my Christian Music Ministry server and opened up my promotion site that I was using to promote this group on the other servers because we cannot add spiders to these groups so I just opened it to enable the group to move into it and we are going home! I have most of the boards for posting built, the pretty pages I do aren't there yet as that is just decorating, but the information is what needs to go first as I don't have that on my hard drive. So we will be doing that here in the next several weeks. The last time I moved it all took about 85 hours so that is what I am beginning with and adding that again because it was a year ago. I will take the welcome posts, member introductions and the prayer requests with us and possibly if I can figure it out by reading the instructions more of the general board posts...if my eyesight holds out. Long times at the screen does a number of my eyes. Well take care of yourself. Is your sister helping you out some sweetie? I sure hope so. Love, Summer |
|
Reply
| |
Thanks for the Update and if you need help migrating just let me know; things are good for me right now and I won't be moving my groups until next month. Glad you made your decision. One of the sad parts is that now it will be a bit more difficult to keep up with all of the groups one belongs to because it won't be like now where you just pull up "MyGroups" and click. Groups are going to at least 8 different sites, for the ones I belong to. I'm trying to book mark them in a special way so I will be able to remember -- sometimes I don't even remember the name of the group I'm looking for until I see it on my list. Guess now I need to boost my memory boosters just a bit more. Let me know if I can help . . . . hugs, peace, love and light Caryn/Nanna |
|
Reply
| |
Hi Caryn, I know about remembering the groups too I was thinking about that the other day. I have a program called TK8 Safe. It has a place for all my passwords and the web addresses and screen names in it. I am going to put all my groups in there that way they will be there for me to keep up with all of them. If you want the place to get it I will give you the web addy to download the program. I can just click on the web addy in the program like we do in the my groups section and the site opens up. Then my name and password is right there too. I mainly used it for my bill paying and credit card safe but it will work for this too. I like it because it's password protected and I keep a list of all my passwords in it and everything important and only one password to remember for all. Our group is looking really good. I am writing a tut right now for you all on how to use it. Also I should get done today the html for our regular pages. The message boards are actually just about ready to use if you can believe that! So things are moving along pretty well. I may take you up on your offer too. I need your group name as I want to apply for membership before you migrate so I don't lose you. I have a site over on Multiply already so I am ready there. Love, Summer |
|
First
Previous
2-9 of 9
Next
Last
|
|
|