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Always Look On The Bright Side Of.... Scleroderma


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#1 epasen

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Posted 10 August 2007 - 09:25 PM

I just wanted to start this topic because we always think about all the bad things scleroderma brings into ourlifes.. And that's obvious, ofcourse, cause we have to live with all of that every single day, and it's not that pleasant, not at all.

But in this topic I'd like to list some of the good things scleroderma has brought into my life, since that could be one way to bring a bit of the sunlight to someone else's day! :)

Well, the first thing that comes to my mind, scleroderma has brought NEW FRIENDS for me! It's so cool to find people form the otherside of the world that really gets you!

The second thing: scleroderma has made me more LIBERAL/TOLERANT. I don't think people in wheelchairs or with some other "funny" things/injures/diseases are freaks. This comes with other things in life too, PATIENCE is one: waiting for doctors in hospital and all the results.. That really make person more patient.

And of course, some medical KNOWLEDGE, that so rare people have. We know a lot more than other people do.

Scleroderma allso makes me VALUE LIFE in other way I've valued it before.

And that's just few things. I hope you come up with a lot more :)

#2 summer

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Posted 10 August 2007 - 10:19 PM

Hi Epasen,
I agree with everything you wrote.
Scleroderma has made me rethink everything in my life, nothing else matters in life except your family or the people you can rely on for support.

I don't take anything for granted and I look forward to the simple things in life.

Best wishes
Celia :)

#3 lizzie

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Posted 10 August 2007 - 11:22 PM

Hi Emmi, think that is a really great idea to think about the postive side of things, so will add a few of my own good things about scleroderma.

·Now do the things like visiting friends , relatives, places which I used to put off until ‘a more convenient time’ which often never came.

·Not spending lots of money on anti-ageing creams.

·No more ironing – long-suffering husband does it because “its not a good idea for me to do it because I might burn myself ”.

·Can get my work colleagues to do some of the things I don’t want to . e.g “Its too cold for me to go out and visit Mr X, would you mind going? or “ I would really love to wash up everyones tea/coffee cups but its really bad for my hands”. I know its naughty, just hope they are not reading this!

Lizzie

#4 peanut

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Posted 10 August 2007 - 11:27 PM

This is a great topic.

I've learned what it really means to enjoy life - my friends and family and to pursuit only that which is important in life. I try to live each day with gratefulness, honesty and love.

I agree with you - Scleroderma makes me value life and respect its delicate nature. I cherish breathing and healthy days and am much more lenient on myself on bad days.

peanut

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my HMO makes me wear a helmet...

#5 Sheryl

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Posted 11 August 2007 - 12:14 AM

Having scleroderma helps me appreciate the here and now. Each day is a wonderful gift. Other people who are overweight I now have empathy for. They may have a medical problem causing it. It doesn't just mean over indulgence. I also have enjoy all my new online friends, this is a wonderful group. Some of us can really relate to each others prespectives and life issues. I am learning more and I give more attention to details than I use to. Life is still good. Sheryl
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#6 Patty

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Posted 11 August 2007 - 01:12 AM

great thread Epasen!!

i had to thnk about this for a second and like you, its brought friends into my life that I never would have had.

It has made me stronger in some ways. I live in pain, and now I know it may be hard but I am doing it.... no pain meds and all. I never thought I could do this in the past but I can.

its helping me not to take things forgranted.
Hugs,
Patty

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Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#7 Margaret

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Posted 11 August 2007 - 01:25 AM

Hi Epasen ,

Since sclero has affected my son and not me, it has taught ME to 'slow down' . When Gareth would have his 'bad days' and was so fatigued and slept all day, house chores, volunteer work, and running errands didn't seem all that important. If he wanted me next to him, just to sit and 'relax', as he says, then I did it. Initially, I thought sclero was a 'death sentence'.....now I know better. He's getting better and stronger each day. It does make one appreciate life differently.

You have choosen an excellent topic to discuss.
Have a good day, Everyone.
Margaret

#8 nan

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Posted 11 August 2007 - 04:02 AM

Hi Epasen,
What a great topic!!! Ever since my diagnosis with scleroderma I have this certain peace about me that is really incredible. I think it is that peace of knowing what I have, but also of knowing that what I have always been taught is the most important thing in life really is. My parents always taught me that family is what you value not material things. I actually feel sorry for people that don't have this feeling. My niece is all into buying the huge house, the best this, and the best that. Unfortunately, none of it has made her happy.
Many people have asked me how I stay so positive and I look at them and say," What good would it be for me to be negative?" That just uses up all of your energy. I also tell them that I am blessed. I have a family I love, a support group that meets twice a month, and an online support of wonderful people from all over the world.
I view each day as a gift. I try to appreciate the little things. I find myself being much more caring and compassionate towards other people. I also am amazed at the goodness that comes out in other people when they know of my diagnosis.
Have a super day! :D Thanks again for starting such a wonderful topic!
Nan

#9 Louxx

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Posted 11 August 2007 - 10:46 AM

I can't think of anything really good scleroderma has brought to me, except for knowing more about tissue and joints.
And also I notice some people my age, and younger, would stare at someone if they had something wrong with their skin. But I don't take notice of them things since I know I have stuff like that myself.

But apart from that, I hate it. Its probably just because I'm young and just want to keep up with all my friends! I'll have to wait till I'm older!

#10 janey

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Posted 11 August 2007 - 10:57 AM

Great topic!

Ditto, ditto, ditto to everything that has been said. A couple of personal items to add:

Before I was diagnosed, all my siblings were becoming more and more distant in every way. Now 3 out of 4 of us are as close as ever even though we live 1000 miles apart. We talk all the time rather than on a birthday.

My husband and I have always been very close, but some how we've gotten even closer (I didn't know it was possible). We make time to be together and relax everyday. Something we never did.

I've lost some very good friends that couldn't handle me not being "me", but have gained new friends that are closer than any I've had before.

I've gained the many friendships with the people of ISN and the members of this forum. You've all filled that void that opens up when you get in a situation where no one understands therefore you have no one to talk to. You're always there to hear the good and the bad.

So very Big Hugs to you all,
Janey Willis
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#11 yogabear

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Posted 11 August 2007 - 01:08 PM

i make absolutely sure that my children know how much they are loved each and every day. I tell them. I show them. I spend time with them and go out of my way for them.

sharon

#12 emmie

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Posted 11 August 2007 - 04:44 PM

emmi,

thank you for this wonderful topic. I can only agree with everything already said.

The things that stand out the most for me are: slowing down and taking time to smell the roses and appreciate the "little things" in life; working through another chapter of life with my husband that we hadn't planned on in our book that has managed to somehow make our love richer; a deeper appreciation of my sister; a new compassion for others who in some way have a "struggle"; a lower standard of a "clean" house and more time to laugh.

Life is for living with or without the diagnosis of a disease(s). I have decided to do that making whatever adjustments/modifications I might need to make.

And in the meantime, I am so very grateful that you all are here to share with when the going gets tough or there is good news to share. It is important to have those who really and truly understand. Thank you.

xoxo emmie

#13 truman

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Posted 11 August 2007 - 09:13 PM

The opposite happened for me. I knew for 16 years this was the cause and ran and ran and ran from doctors until my right arm became affected with the stiffening. I became brave, pushed out my chin and accepted the diagnosis and am presently with a fine Rheumatologist who has put me on a gout medication which has, in just 3 days, virtually eliminated the calcium :( deposits from rising to the surface of my skin. My sons left home; 26 and 30, left home immediately and will not respond to my emails or tell me where they live. I am totally alone at this point and don't know if I made the right decision to face the final diagnosis. I don't don't know if they're frightened or selfish, but I have to face this alone and I'm sure the stress is not a good mix to the situation. I have found that the few friends and co workers I've confided in have provided me more support and caring than my family.
Tru

It is what it is...........

#14 jefa

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Posted 11 August 2007 - 10:15 PM

Welcome to the ISN Sclero Forums, Truman. I am very happy you have found us and decided to share your experience with us. Scleroderma is a tough disease to face up to, but not one that is impossible to deal with as you are now finding after all this time. I can't explain your family's reaction, but perhaps they share the same kind of denial that you had for 16 years. It can't be easy for any of you. The important thing is that you are now taking the bull by the horns and have found a good medical partner to help you fight. As others have said, this forum is a terrific place for support and the members will soon become your friends.
Warm wishes,
Jefa

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#15 epasen

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Posted 12 August 2007 - 08:51 AM

THANK YOU SO MUCH for your AMAZING posts! This gave me a HUGE smile and warm feeling, when I read all of your posts trough. You all had great things listed, most of them I can relate to, too. Thank you for making my day a little bit brighter (almost everyday) : ))

#16 truman

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Posted 12 August 2007 - 10:07 AM

Jefa:

Thank you for your kinds words. Was just sitting here having a good crying spell, when I logged on and saw your reply. It's strange in that having symptoms all these years was tolerable, but applying a name to the condition makes you freeze and feel like a total time bomb. It's only been two weeks since diagnosis and I have to learn to get over these feelings. I just want to be the me (mentally) that I was two weeks ago. Will I ever feel that comfortable again?

Truman
Tru

It is what it is...........

#17 Kamlesh

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Posted 12 August 2007 - 11:52 AM

Hi Espen and others,

This is great thread and thank you for starting it.

Scleroderma has taught me so many valuable lessons. Now I am realizing how precious life is. Now all my problems look so tiny compared to Scleroderma. If I can manage Scleroderma, I can handle anything else comes in my way.

Here is a paraphrase of a quote from one of the Indian books.

Human is not born to keep holding broken dreams or burdens from past. He/she has gotten wings of an eagle. It is duty to dream for future, work on it, and enjoy the labor of fulfilling the dream. If it breaks, it is his/her duty to run after new dream even if you have bloody feet from the broken pieces of the past dream.

My friends, we are bigger than Scleroderma or any other diseases. It is our duty to enjoy every moment we have. I know it is easy to say, but we have to at least try.
Kind regards,

Kamlesh


#18 Kamlesh

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Posted 12 August 2007 - 12:07 PM

Hi Truman,
You are not alone my friend. I understand very well not getting support from immediate family. There is no use of trying convincing any one in the world about your problems. If they really love you, they will find ways to help. There is no use of regrets, sorrow, or wasting your tears, if they do not understand or do not support you. You have to become strong and take care of yourself.

You need to have one and only one goal how to bring your scleroderma under control at any cost. If you are not healthy, you can’t help anyone. Feel free to send me a private message or email and I will be glad to chat with you.
Kind regards,

Kamlesh


#19 nan

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Posted 12 August 2007 - 02:22 PM

Truman,
I think you will eventually feel better. I was so anxious to get my diagnosis and when I finally got it I was relieved. Then about two months later I was going to have tests done and when I saw my name with diagnosis scleroderma next to it I freaked out!!! I am very fortunate in that I have a great support system with my family. I send good vibes your way!
Nan

#20 Sweet

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Posted 13 August 2007 - 04:22 PM

Great topic,

For me it has helped me make sure of what is really important in my life. I don't take anything for granted anymore. I am taking time for myself and my family. I live at a MUCH slower pace and have come to appreciate nature much more than I ever thought possible. I find wonderment in the littlest of things. And I am more compassionate to others who are sick and are dealing with hard times.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)