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Lilykat

wow I have been off for a long while. Ever since I discovered facebook. : I miss this site. last month

Tell us about your experience with/connection to Lupus

I have had SLE for nine years. It attacked me ferociously in my freshman year of college. About 6 months prior to that one of my closest friends told me she had Lupus. I'd only heard of it on One Life to Live. The character who had it died. My...

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  • Ruth

    Lily!!!!!! OMG I miss you!!! I do have a facebook too, and that is where my time has been spent, among other things =) I have been hanging in there. Recovering from a stroke in April, but thank goodness it was not too damaging! I stopped working as a result and have finally kicked my "denial" in the ass and come to terms with it. Still fundraising for my walk making jewelry with 100% of the proceeds going to the walk. How are you feeling? Will you be there in September?



    Love,



    Ruth

    last month

  • Anteaters

    Hi,





    I'm a UCIrvine student from California, Irvine. I am putting together
    the third annual Fashion for Lupus and other autoimmune diseases. Please
    visit www.careforautoimmunity.info, www.fashionforlupus.eventbrite.com,
    or search Fashion for Lupus on youtube.com to find out more
    information.





    For this year's show, we are aiming to have a theme of "Journey through
    Lupus." We really are trying to recruit patients, their families, their
    friends, and their physicians from the area to be interviewed by our
    student videographer. If you are not in the area but would be interested
    in doing something like this and think that you can find someone
    (perhaps family members or friends) to do the videography and send us
    the results that would also be unbelievably helpful! We want your
    Journey through Lupus to show to our guests and to let them know what it
    really means to live your life with Lupus. We want to touch everyone's
    hearts and show them that there is also hope! We want to address the
    issues and mention that there is a lot of work being done that some of
    our fashion show guests can contribute to. We want to give you a chance
    to let them know what they can do!!! If you or anyone you know might be
    willing to share with us their story and help us make a video narrative
    of the Journey through Lupus to help raise awareness for Lupus, please
    message me or post on the comment wall.





    We also, always accept personal stories (essays, poems, home videos,
    etc) to display on our website under the Autoimmune Diseases tab (which
    we are hoping to expand)! Your story could be posted here anonomously if
    you wish.





    If you or your friends and family are in the Orange County, CA area and
    would like to help out with the annual Fashion for Lupus, please message
    me and let me know! Our team can always use a new perspective and an
    extra set of giving hands :)





    Thank you all for your continuous strength.


    -Tandis Soltani and Anteaters Against Autoimmunity


    2 months ago

  • Tammy

    REMEMBER.. TODAY IS EARTH DAY!!! 
    HAVE A GREAT ONE...
    GOD BLESS:>)

    4 months ago

  • Tammy

    HELLO THERE... HOPE YOU HAVE BEEN HAVING A PAIN FREE WEEK SO FAR!! WOULD LIKE TO BE FRIENDS. I THINK WE HAVE SOME IN COMMEND. YOU HAVE REALLY BEEN THROUGH A LOT FOR SO YOUNG. I KNOW JUST HOW YOU FEEL.
    TAKE CARE AND MANY BLESSINGS.

    6 months ago

  • Ruth

    Lily! I miss you!!!! How are you?

    7 months ago

  • Ruth

    For some reason it cut off the "thank you" for the Christmas card... =P

    7 months ago

  • Ruth

    Lily love! Christmas card! I had a flare again, and I guess it put me in a bit of a poo poo depressed mood...in denial I guess. So I stopped talking to alot of people and basically dropped off the face of the earth, which is the wrong thing to do I guess. I am sorry. I just had to process alot and mull over alot of my own insecurities and fears. How are you?

    7 months ago

  • Elyse

    Hey Lily!  I've been laying low because I was soooo tired.  I had a mini flare this weekend, from being so run down. I'm enjoying the few quiet days before the new year starts.  I'm avoiding the wind by working out indoors today.  I love the weather but won't train in it :)


    *abrazos* right back atcha :)

    8 months ago

  • Summer

    Hi Lillykat how have you been doing latley? I am foing much better Lupus wise since I changed to another Rhumie doctor. I must admit I have mixed feeling that he has perscibed a walker with a seat for me, for my challenging days because of a bad fall I had. the new meds that he has me on are really helping me function better. One med is for my circulutory ptoblems (Rynauds syndrom) which really has already made a difference in my abilty ro walk more without the pain and the swelling and a pain medication to treat my joint pain that happend to be used also has a muscle relaxer I take it three times a day and it truly lessens my stiffness in the morning. My puppy is old news now,. I had to return her to the shelter after she attacked me and now I have five more days on a antibiotic for a serious infection due to the dog bite. Well I hope all is well with you and I wish you a Great Thanksgiving and I would love to know what is going on in your life anything new or exciting happening?



    Take Care



    Summer

    9 months ago

  • Summer

    Hi Lilykat, I hope that you are doing well. I have been being sort of a recluse because of my flare I am having right now. I do not like to complain. Chloe, my 3 month old puppy is keeping me quite busy and she is already starting to be protective of me on our walks with people she gets a bad vibe with. I now know that we both have successguly bonded even with her being a stray running in the streets until someone rescued her and placed her in the shelter that I adopted her. She now cuddles and comforts me when I feeling lousy. We have come a long way and in two weeks she was fully house broken



     I hope that you are okay and would love yo hear from you when yoou are able!



    Take Care



    Summer

    9 months ago