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Thread: Feeling lost and forgotten?

  1. #1
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    Default Feeling lost and forgotten?

    I know many come and post once, twice and even more then poof we never hear from them again.

    And I also lose track of where I had been and forget to return to that thread and reply. Forgive Lupus, it is he who does that to me...

    I always wondered, did they lose the link and can't find there way back in cyberspace to us..or perhaps they took a turn for the worst.

    If it isn't any of the above...and you are in cloak mode, guest mode reading but in need of direct comfort, we are here. My arms are always open, I have lots of room to give feeling of hugs. We all do...

    :cry: I feel bad, I unintentionally neglected someone.

    We have lupus means you too....you don't have to be alone.
    Oluwa
    I have Lupus. So *^#@! what.

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    Default Oluwa

    As a new person to this board let me tell you this....

    This board is the friendliest, most responsive board I've found. I've lurked on others and posted on some. But there's no movement...no replies....no comments...just the same postes sitting there from the first time I went on that board.

    The warmth and the empathy is obvious here. Thank you all so much.

    Some times I cant remember what section I made a post in lol. I imagine others do the same. :lol:

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    Gentle Oluwa -

    Such a kind and thoughtful soul. Thank you for your presence here.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Oluwa,

    I can't speak for anyone else, but I'm not planning on leaving here anytime soon. I like it here. Such a great group of people here. Non-judgemental, diverse, and understanding.

    rob

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    I found this board in the middle of the night, shortly after I was diagnosed. I was SCARED TO DEATH!! :shock: I didn't have anyone to talk to (hadn't yet found a local support group) and I didn't know anyone else who had lupus. Everyone on the board was so kind. Saysusie provided me with such wonderful information - and eased some of my worst fears. This is a warm and safe place for me. Now, I've gotta' check in regularly so I don't miss anything!

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Me too, I check in daily, okay hourly....I was running out of rope and hope when I stumbled in..

    Inbetween the pop ins and outs I missed someone. And I want her to know and anyone who may have been overlooked, whose post went unanswered, you do matter...

    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Sweet Oluwa;
    My "Unofficial Moderator" :lol:

    Thank you for thinking of your friend and of the many who have not, for whatever reasons, returned to our board to read our responses. I read all of your posts reminding each of them that we are here and that we do care. For being who you are, I thank you! :lilangel:

    Mnjodette, Rob, Pearl, and Sits_inthe_corner, Oluwa;
    I am so happy that you were able to get, from this site, what Conrad and I wanted to provide. When my daughter was so ill, she and I tried so very hard to find a place to answer our questions, to give us support, to understand our fears, etc. and there was no one place that helped us at all. Like you mentioned, sits_inthe_corner, our posts would go unanswered for weeks and we were left with the feeling that no one truly cared! In Lauri's memory, I wanted to make a place where no one who was suffering with this disease (or any auto-immune disease) would ever feel that lonely and uncared for again.
    Thank you for letting me know that, in at least my small way, I am accomplishing that!!

    With Love
    Saysusie
    Look For The Good and Praise It!

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    :? :? :? :?

    I AM SO SORRY THAT YOU FEEL THIS WAY......

    THE REASON WE FEEL THIS WAY ARE NOT OBVIOUS TO US BUT TO SOMEONE ON THE OUTSIDE IT IS.

    FIRST WE ARE ISOLATED DUE TO THE FACT THAT WE ARE USUALLY HOME ALONE AND HAVE NO ENERGY OR STRENGTH TO GO OUT.

    WE ALSO FEEL ALONE BECAUSE NO-ONE ESPECIALLY OUR LOVED ONES REALLY UNDERSTAND OUR DISEASE OR WHAT WE DEAL WITH ON A DAY TO DAY BASIS.

    WE KNOW WE ARE LIVING WITH A POTENTIAL FATAL DISEASE, WE KNOW IT IS NOT A COMMON DISEASE, AND WE KNOW THAT THE PROFESSIONALS DO NOT KNOW EXACTLY HOW TO EVEN DIAGNOS US CORRECTLY LET ALONE SET UP A TREATMENT PLAN.

    BASICLLY WE ARE THE UNKNOWN DISEASE...ALONG WITH OHTERS LIKE PARKENSON;S, HEP C, AND DISCOID LUPUS THAT THEY HAVE NO REAL DRUG THAT IS DESIGNED SPECIFICALLY FOR US !!!!

    SO WHEN YA LOOK AT THAT WE ARE BASICLY OUT IN THE COLD ON THIS ONE AND IT MAKES THOSE FEELING SEEM BIGGER THAN LIFE.

    THIS IS WHY I SUGGEST THAT WE ALL HAVE A THERAPIST TO HELP US DISCUSS WHAT IS ON OUR MINDS AND JUST TO GET IT AND MAYBE US OUT OF THE HOUSE FOR AWHILE OF NOTHING ELSE!!!!!


    MAY I SUGGEST THAT YOU FIRST SIT YOUR FAMILY DOWN AND EXPLAIN TO THEM EXACTLY HOW YOU FEEL AND WHY?

    TELL THEM OF YOUR NEEDS AND WANTS REMEMBER THEY ARE NOTMIND READERS AND WE DO TEND TO GET INSIDE OUR OWN HEADS AND NOT COME OUT !!!!

    SECONDLY YOU MUST GET YOURSELF A HOBBY SOMETHING TO DO AT HOME WETHER IT BE KNITTING OR PAYING PIANO OR GUITAR ANYTHING !!

    THIRD YOU MUST KEEP YOUR MIND AS HEALTHY AS POSSIBLE.....AND A THERAPIST CAN HELP YOU DO THAT AND TEACH YOU HOW TO MEDITATE AND THAT IS VERY HELPFULL.

    FOURTH MAYBE YOU CAN VOLUNTEER SOMEWHERE LIKE A HOSPITAL AND YOU WOULD BE AMAZED ESPECIALLY IF WORKING WITH CHILDREN HOW MUCH BETTER YOU WILL FELL SEEING WHAT THEY DEAL WITH.

    AND LAST YOU MUST REALIZE YOU ARE NOT ALONE AND NEVER WILL BE IF NOTHING ELSE YOU CN ALWAYS PRAY

    LOOK AROUND IN YOU TWSP AND SEE OIF THEHOSPITAL HAS ALUPUS SUPPORT GROUP.

    AND LAST MAYBE A DOG OR TAKING A NEIGHBORS DOG FOR A WALK...FRESH AIR AND SUNSHINE (but be covered) IS GREAT FOR LIFTING UP ONES MOOD

    BUT PLEASE DO NOT ALLOW SOMEONE TO TELLYOU THAT YOU NEED MEDS FOR DEPRESSION AS YOU ARE NOT CLINCIALLY DEPRESSED. THOSE MEDS ARE FOR PEOPLE WHO DO NOT HAVE A REASON TO FEEL AS THEY DO.

    IF YOUR DEPRESSED WITH A SICKNESS THEN YOUR DEPRESSION IS NOT DEPRESSION IT IS A GREIVING PROCESS YOU ARE GOING THROUGH FOR LOSING PART OF YOURSELF !!!!! AND THAT'S EXPECTED AND OK.
    NEVER ADD ANY MEDS YA REALLY DO NOT THINK YA NEED....EACH ONE HAS A SIDE EFFECT AND YA NEVER KNOW HOW THAT MED IS GOING TO AFFECT YOUR HEALTH AND MIX WITH OTHER MEDS.

    I HOPE THIS FINDS YOU IN BETTER SPIRITS.

    STJAMES 8)
    MY GOAL IN LIFE IS TO BE AS GOOD A PERSON AS MY DOG ALREADY THINKS I AM.....

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    Hi Oluwa,

    I'm one who posted here for a while then stopped. I read almost daily tho and feel a part of this family even tho I don't often "show up" anymore. Your empathy and insights and caring have made me feel better.

    One reason I stopped posting was that I googled my name and found posts from here that showed up. It worried me that I was revealing personal info that was readily available to anyone on the net. It kind of scared me.

    I decided the other day to post again but keep symptoms and treatments to myself. I might not get the specific support I need but maybe I can ease someone else's troubles a tad.

    Oluwa, you have as gift for giving comfort and I thank you and ...can I please be your friend too?

  10. #10
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    Mrs. Murdena;
    That google thing has happened to me also. But, I figured that everyone knows these things about me anyway (my loss, my diseases, my symptoms, my treatments etc.) and what can they do to harm me by knowing these things. I've suffered, already, the most devastating loss...anything else is sort of trivial to me!
    I understand your trepidation and I don't blame you for wanting to be careful. I guess I'm just a kinda careless gal :lol: I figure "Who Cares?" Maybe I'm being silly or naive or both! oh well :roll:

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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