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Thread: Looking for a shoulder to lean on

  1. #11
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    Just checking in on you Vancoverguy....

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

  2. #12
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Vancouverguy,

    I'm Rob, I'm 41, and was diagnosed with SLE five years ago. I live in Maine. My mother is Canadian, and was born in New Brunswick. She moved to Vancouver when she was little, and spent much of her childhood there. Beautiful country you live in.

    I too, came to a crossroads in my life about 4 years ago. In fairly short order, the life I had worked so hard to build for so many years, disappeared almost overnight. I owned a successful company, it was my dream job. I had a beautiful fiancee, friends, I had really finally "made it". I was having terrible health problems though, and I was eventually diagnosed with Systemic Lupus in 2004. My fiancee left a month before the wedding, and I had to sell my business and go on full disability, which I am still on. Friends stopped coming around, and my family was anything but supportive. Alone and hopeless, I tried to kill myself, and damn near succeeded.

    I recovered from that, packed my stuff and my 3 cats, and moved back to my childhood home in Maine to start a new life. I've had setbacks, but so far so good. My family and I have mended fences, and I've been learning to live in a new normal. So, I understand very well how you are feeling, and what your situation is like. I want you to know that there is life after reaching a crossroads, and it's not necessarily bad. Many doors closed for me, but many new ones opened up as well. I've found new friends, new interests, and have been learning to cope with the rollercoaster of flares that is Lupus.

    I don't feel as though I have anything to offer a woman either, and the pain of being abandoned still is very fresh. But, people here, friends, always tell me there's someone out there for me, so I take their encouragement, and keep an open mind. I would pass that advice on to you.

    As you can see, this is a very active group, and in my opinion, the best support site I've ever belonged to. People here are incredibly understanding, and the words of friends here have gotten me through many a long, lonely, and scary night. I think you'll like it here. Welcome to our group!

    Rob

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    Quote Originally Posted by vancouverguy View Post
    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.
    Just hang in there and know that God and I care about you. I know this can be tough at times and i was 58 when i was diagnosised and i do not know anyone personally so this is why i love this site. My family is there but they do not fully understand the things you go through as someone else who has this. I am from Lebanon Pennsylvania in the United States love Bonita

  4. #14
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    Hi Vancouverguy...

    Just checking in to see how your day is going.....

    I pondered your question.....how do you get by? That's a tough one with this disease....we all know that....

    But I thought I'd share a few things that I've figured out over the years of my search.

    I've had to make many adjustments through the years to what I can and can't do, obviously, we all have...but for me, the best thing I found was something I can feel passionate about...something that I love and brings me some joy when I do it. I had to find a hobby or 2 that I was able to play around with when I have the time and energy. For each of us, we have those things that can occupy our time and our minds and that give us a break from the horribleness of this illness.

    For me it's listening to music...I've found there's certain music or songs that speak to my soul, that bring me joy and dancing in my heart...it's always rock or reggae that brings the most joy...but my tastes are quite varied...as you can see I'm a Pink Floyd fan...but Bob Marley rocks my soul, as does Stevie Ray Vaughn, his blues rifts speak the exact words of what Lupus has done to me at times. I find Norah Jones soothing when my mind needs a break. So, I have my MP3 player my husband gave me last Birthday and it's loaded with over 500 songs. I take it everywhere. I've got the Sony noise cancelling headphones that work great to tune out the world when needed.

    I also have a huge collection of movies...mostly comedies...but I'm a Sci Fi fan too, especially Lord of the Rings. The movies help occupy my mind and take me away from this world of Lupus, if only for a short time. And laughing and endorphin release are 2 of the best meds in the world...for me anyway.

    I have a few other things I like...planting my flowers, reading, spending time on the internet learning about different places and cultures around the world, and lately I've been experiementing with cooking (I love to eat!) and educating myself about wines. I visited Sonoma a few years ago when my husband was racing cars at Infineon Raceway and I absolutely loved wine country.

    Don't know if this is helpful...but I'm hoping.

    Take care....

    Lori I've got my shades on today, we finally got sun in Portland!

  5. #15
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello Vancouverguy;
    You've come to the right place to find friends and to ALWAYS have someone to talk to...someone who understands what you are going through and who will not judge you in any way. One thing that we truly want you to know is that you are not alone. Lupus is a very lonely disease because there are so few who truly understand the disease and how it affects us. As such, like you mentioned, we lose friends, job opportunities, our social life, and we can often fall into a state of depression (there are many of us who have literally been there..done that!). But, we here at WHL support one another with genuine caring and concern and we want to help you to get through this.
    Yes, we've lost friends....but we've made new ones! New friends who are loving and understanding. It is not uncommon, as we journey through this illness, to find that we shed friends along the way. More often than not, the friends that we shed were toxic for us anyway and our emotional well being increased as a result of their loss.
    Losing a loved-one, that has happened to many of us also. This entire forum is dedicated to the loved-one that I lost. Cherish these days with your sister and concentrate on the love that you have for one another. Please know that we are here for you in this journey as well!
    You've been given some ideas about how our members cope..amongst those ideas was "support". You've reached out for support and we are here to give you as much as you need. We will always be here when you need us...you are not and will never be alone as long as you are here with us.

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

  6. #16
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    Hi Vancouverguy...

    Just checking in to see how you're doing. I'm hoping you've found a friend...someone to talk to. I hate to think of you going through this alone.

    Just wanted to let you know I'm here....ready to listen....anytime.

    Fondly,

    Lori

  7. #17
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    Please let us know how you are feeling. I lost Internet for a couple weeks, losing communication with my friends here was emotionally very painful. I've grown to love them dearly. This IS my support system.

    You don't have to suffer alone anymore. We are real people, with real lupus who care.
    Ayah
    Believe in Tomorrow - Appreciate Today
    http://twitter.com/LupieAyah

  8. #18
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    Oh lean on me too.My heart feels your pain and such a sad time for your sister going through such tough times.Wow.YOU ARE ALONE NO MORE!!!! You tell us anything anytime you need us. Sending you gentle hugs my friend. We are right beside you now!!

    love and strength
    Angel.xxxxxxxxxxxxxxxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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