Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: Yippee! New site updates with more features!

  1. #1
    Join Date
    Sep 2000
    Location
    Seattle, WA
    Posts
    386
    Blog Entries
    1
    Thanks
    1
    Thanked 38 Times in 19 Posts

    Default Yippee! New site updates with more features!

    We just updated our site with more features for members. You can submit articles from the "portal home" link and even play games.

    You can hear SaySuzie singing on the song "Agnus Dei" in our online music section.

    I have some of my own personal piano selections there too if you need a little break to relax.

    Ok, so maybe the games and music are a little trivial for the subject matter of this site. But the portal home section will allow members to submit articles that future members can access for support.

    I hope you enjoy it!

  2. #2
    Join Date
    Jul 2004
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hello new friends!!! I am in total confusion, I do not know how to use this website. I read all the frequent questions but for some strange reason, my windows do not follow the criteria all of you have. So to post, I don't have a post button...My name is Fredielyn, divorced woman of 50 years, 51 in two days and I was diagnosed with sle Lupus in March (finally!!!) I am outside San Francisco, I would love to hook up with all of you and figure how to do this site!!! I am very right brain and not computer savvy at all.....Would anyone help me Please???????
    fredielyn sobel

  3. #3
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,749
    Blog Entries
    9
    Thanks
    1,610
    Thanked 926 Times in 589 Posts

    Default

    Most Beloved Administrator:
    I absolutely love the new look of the site and the new features. I even listened to Agnus Dei...who is the guy singing the alto part???? :lol:
    Oh Snap!!! That's Me!!!! (LMAO)
    I thank God for you every day most beloved!!! This site is my heart and you treat it so well!!
    Call Me
    Saysusie

  4. #4
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,749
    Blog Entries
    9
    Thanks
    1,610
    Thanked 926 Times in 589 Posts

    Default

    Hi Fredielyn:
    Welcome to our site. I am sorry that you are having difficulties using the site. It appears that you were able to figure out how to submit a reply. Are you unable to do so in the other forums??
    We will help you in any way that we can (both technically and with any issues that you may have with LUPUS).
    If you continue to have problems, click on the "contact our Lupus Website" icon on the top of this page and submit your questions/problems to the administrator of this site. He will help you in any way that he can!
    Again....Welcome to our site!
    Saysusie

  5. #5
    Join Date
    Jul 2004
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Newbie Taking A Day At A Time

    Hi Everyone! Susiesay, are you the leader of all the topics or just one? I really would love to meet new friends that can understand and help one another. I live in Marin County, I don't know anyone (but hear a lot of people) have Lupus..The Lupus Foundation is supposedly starting a support grp. here. I am very lucky that my disease has not caused me any life threatening events though pain and fatique is chronic in my life. I had neck surgery December 2002 and on October 19th, 2002 I woke up not able to move because every joint in my body hurt. It took me 5 years to get enough courage to have neck surgery (2 fusions) and now I have been diagnosed with Lupus. My rheumo initially thought I had Polymyiocitis, which I had to endure unbelievably horrible procedures to prove wrong. At this point in my life, I do what I can, lead a spiritual path, love my dog and get lonely at times. Sooooo, what's new with U?????? ;o)
    fredielyn sobel

  6. #6
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,749
    Blog Entries
    9
    Thanks
    1,610
    Thanked 926 Times in 589 Posts

    Default

    Hi Fredielyn:
    I am the moderator of this site which means, I guess, that I am the leader of all of the topics. This site is dedicated to providing a place where you can get support, receive encouragement, ask questions and just generally share your feelings with others who understand what you are going through. We especially want you to know that You Are Not Alone!!
    How are you doing since your neck surgery? Has it alleviated any of your pains? What medications are you taking?
    I know how lonely this disease can make you feel - it is such a misunderstood disease because there are few physical manifestations!! People do not understand what they cannot see! But, we are here for you and we understand!! I know that you will be able to find friends here!!
    Peace and Blessings
    Saysusie

  7. #7
    Join Date
    Jan 2004
    Location
    Pacific Northwest
    Posts
    667
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    So, I really wanted to hear Saysusie's musical talent, but when I clicked on the song, it said I was not "authorised". Am I in the wrong spot or did I do something wrong?

    Missy

  8. #8
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,749
    Blog Entries
    9
    Thanks
    1,610
    Thanked 926 Times in 589 Posts

    Default

    Hi Missy;
    I just tried to listen again and got the same message as you. You can go to www.roadrecords.com and there are soundbites of my CD there if you still want to give a listen. In the meantime, I will contact the administrator to ask what we need to do!!
    THANX 4 TRYIN'
    Saysusie

  9. #9
    Join Date
    Sep 2000
    Location
    Seattle, WA
    Posts
    386
    Blog Entries
    1
    Thanks
    1
    Thanked 38 Times in 19 Posts

    Default

    Try it now and see if it works. The "Agnus Dei"

  10. #10
    Join Date
    Jan 2004
    Location
    Pacific Northwest
    Posts
    667
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    It still doesn't like me - bummer!

    Missy

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •