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Thread: Looking for a shoulder to lean on

  1. #1
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    Default Looking for a shoulder to lean on

    I'm turning 34 this year and I have been diagnosed with SLE for 16 years. I have had many compications due to this illness and the various therapies provided by my team of doctors. The list seems to grow every year, hip replacements, pulmonary embolism, cellulitis, secondary hypertension, nephrotic syndrome of the kidneys ect.

    I have I have able to get by stregnth of will alone. I have never had anyone to rely on, not family or friends.

    Recently, I have found that my will is failing and I feel very alone. I have lost friends, family, girlfriends and even lost job opportunities due my illness. My only close family, my sister is dying from terminal cancer and this will be her last year with me.

    For such a large metropolian area like my city (Vancouver BC) there are not any if at many support groups in my city.

    I have hid the Lupus from friends and co-workers and bosses in order to get by. I have climbed the corporate ladder to one the highest offices in my company and thrown myself into my work in order to not think about the Lupus and the constant pain.

    I feel very alone and I don't feel that I could provide much to a potential partner except alot of late nite visits to the emergency room. I also cannot have children because of the chemo drugs regiments that have been used on me over the years to treat my nephritis of the kidneys.

    I am afraid of what the futrue holds and would really appreciate some advice on how you all deal with this awful disease and perhaps how to get by.

    Any comments would be appreciated, I think what I may need is a friend to talk to.

  2. #2
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    Hi Vancoverguy...

    You don't have to be alone....you have found a friend in me. Though a stranger I understand your plight. I am Oluwa. I have Lupus. My mother died of terminal cancer..tomorrow is 14 years her passing.

    Having a life threatening chronic disease we create an island of one....isolate and separate ourselves....

    Here there are many, like you, like me....to help you through. A few in Canada...many in the USA. So, you are not alone here. Several guys..me, I am a girl.

    I used to live in Seattle, now South Carolina...so I am familiar with the PNW and with a few trips to Vancover...such a gorgeous area, eh?

    I believe the thing that helps us to cope is to talk about the things that plague us emotionally. The disease does take it's toll on our spirit too....

    Advice on how to cope emotionally and physically? In relationship or work?

    Lets talk I am here..hugs,
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

  3. #3
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    Hi Vancoverguy.

    Hey, have you check this place out if you need personal, face to face contact...

    BC Lupus Society
    200 - 1645 West 7th Avenue
    Vancouver, BC V6J 1S4
    Canada
    Phone: 604-714-5564; Fax: 604-714-5555
    Email:
    info@bclupus.org
    Website: http://www.bclupus.org



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

  4. #4
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    Hello Vancouverguy and Welcome....

    I'm glad you decided to join us. Feeling very alone (even with a close family around me) and feeling like I had no one who understood...no friends...is what led me to finally seek out this forum as well. I've been hanging around for about a year now.

    I'm Lori...I've had Lupus since age 18, 27 years now...so I know the ups and downs, the ins and outs of Lupus pretty well. This is such a lonely disease, one that kills friendships, relationships and dreams. It is just so unfair in it's onslaught of one horrible thing after another...in it's ability to take over a life and isolate a person from happiness and people....it's ability to shatter our hopes and make our bodies feel like hell.

    A lot of us can fight the fight with sheer will...one day at a time...but I'm certain every one of us at times gets tired of that fight and our will 'wavers', and sometimes crumbles completely and we want to give up...we're sick of fighting it alone...sick of the pain and tests and ER visits late at night...sick of trying to hide it from others around us...because that takes so much of our energy too.

    Please know that I hear your words and I understand your pain...I, too, have had my hips replaced, I've broken my back twice, I've been in the hospital hundreds of times, my vocal cords have been destroyed and I'm slowly using the use of my right hand. I understand what this much pain can do to your body, your mind, and your will to live. It is one helluva tough battle to fight.

    But you must know that you are not alone and don't have to be...this forum has provided a place for me to share how I feel and completely unload my anger, emotions, frustrations in a safe place where nobody judges me, they just lend an ear, a shoulder to cry on, and tons of support and understanding. In fact, I've never found any other people in the world that 'get' me and what I'm going through better than this great group. There is a strong bond of love and friendship here. I hope you'll want to be part of that.

    Please stay and share with us...I'll bet you have things of great value to offer us as well. I'd be happy to be a friend...we're not too far apart...I'm in Portland, Oregon. I haven't been to Vancouver yet, that's on my list of future vacations, but I ventured to Victoria BC a few years ago and met some of the nicest people on the planet. Canadians rock!

    I also wanted to tell you I'm very sorry about your sister's battle. Cancer is such a horrible monster that has taken far too many good people. Hugs to you and your sister.

    Fondly,

    Lori

    p.s. I'm a tiny person, but I have a big heart and a shoulder for you to lean on.

  5. #5
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    hi vancouver guy,

    your will and spirit will get you through, and you've found a wonderful support network at these forums. we all understand your plight... and feeling so alone in the world. but we are not alone! my name is tasha and i'm 23. i was diagnosed with SLE 3 months ago. i'm still in shock and worried about what this disease will do to me over the course of my life... and i'm so young. you are not alone in your worries.

    i hope things look up for you very soon. go check out the support groups in your area and also maybe consider seeking individual therapy. it can be very helpful and uplifting. i wish you all the best!
    23 year old clinical psychology grad student with lupus (SLE) and nephritis
    Medications: CellCept, Plaquenil, Prednisone, Lisinopril, Lipitor, OsCal+D

  6. #6
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    Hey Vancouver guy,

    Lean on me, also...It is so easy to isolate yourself. My father died of Esophageal Anenocarcenoma...brought on by Barretts disease...I am not comparing my feelings equally with you, just trying to say if you need to talk or lean on anyone, this forum is the place for you.
    You might want to look up the site that Oluwa found for you...hopefully you will be able to meet someone face to face.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  7. #7
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    Thank you for all of your responses do far.

    When I was younger, I did take the route of talking to therapists as my sister and I come from a broken family. I find that I become paraliyzed with sadness and fear when I discussed my illness to others in the past.

    I have also tried contacting the Vancouver Lupus Sociey, but they have said there is no support group in Vancouver as the organizer needed to step down.

    It strange to see that Robert Froset poem. I think about that line, "many miles to go before I sleep" often.My painful journey has reached a cross roads. And there's the fact I cannot sleep more than three-four hours a nite for the 16 years. To quote from Hamlet, "To sleep, perchance to dream- ay, there's the rub." How good it would be to sleep.

    All of your kindness will hopefully help me muster my focus again and my will to go forward.

  8. #8
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    Welcome,
    Lean on me also. I'm a 64 yr old male that was told I had Lupus in February. I still don't know much about it so on that end I'm not much help.

    I belong to a lot of forums, not about Lupus, but this one is the most caring forum that a person could find. The compassion and love here is beyond anything that I could imagen.

    I vented most of the morning here about my first rheumy appointment. No one told me to go away. They let me get it off my chest.

    If you need a male to talk to just send me a PM or email and I'll get back to you asap.


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

  9. #9
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    Hey VancouverGuy,

    I agree about the sleep...my quote is miles to go...I just keep going because sometimes there is no sleep.

    Robert frost has been a favorite for many years and that poem especially.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  10. #10
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    hi vancouverguy,

    as you can see, there are a lot of welcoming friendship shoulders in this group, just be gentle when you lean, because we all hurt every day, but we all carry each other every day, and we are all so thankful for each other every day. we welcome you into our circle.

    lupus is absolutely the most difficult thing that i have faced in my life, and i am 56 so have faced a lot. it knocks you down, kicks you around, and then isolates you from those who could help you get back up.....well, it can't separate us from the members of this forum....therefore, we beat lupus.

    i can not put my sorrow for you and your sister into words. just know that my heart is with you and her and i will be here to help you face this truly cruel cancer.

    welcome, hope we can help you....this group has helped me more than i can express...everyone is so special, there is a wealth of knowledge that is shared, and the compassion leaves me speechless (well not really, but almost).
    Phyllis

    share a smile today

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