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vancouverguy
04-03-2009, 02:10 PM
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.

Oluwa
04-03-2009, 02:48 PM
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

Oluwa
04-03-2009, 02:51 PM
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 (http://www.bclupus.org/)


Love and hugs.. (http://www.bclupus.org/)
Oluwa (http://www.bclupus.org/)
(http://www.bclupus.org/)

Rastagirl
04-03-2009, 05:50 PM
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 :heart:

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

tasha
04-03-2009, 05:52 PM
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!

sick n tired
04-03-2009, 05:56 PM
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.

vancouverguy
04-03-2009, 07:05 PM
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.

Grime
04-03-2009, 07:16 PM
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.

sick n tired
04-03-2009, 08:37 PM
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.

mountaindreamer
04-04-2009, 07:40 AM
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).

Oluwa
04-04-2009, 07:47 AM
Just checking in on you Vancoverguy....

Hugs..
Oluwa

rob
04-04-2009, 08:17 AM
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

Bonita
04-04-2009, 10:55 AM
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

Rastagirl
04-04-2009, 01:56 PM
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 :cool2: I've got my shades on today, we finally got sun in Portland!

Saysusie
04-05-2009, 09:34 AM
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

Rastagirl
04-13-2009, 09:02 PM
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 :cool2:

AyahsClan
04-13-2009, 09:41 PM
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.

Angel Oliver
04-14-2009, 05:12 PM
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:yes: