epasen

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

25 posts in this topic

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...........

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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

 

 

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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

 

 

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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

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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)

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I have had to learn and re learn to live in the moment and appreciate every little thing.

 

I have become more thankful and grateful for the things I have and the things I am able to still do, and the places I am able to still see.

 

I have also become more sensitive to other people's suffering.

 

Good topic.

Thanks,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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THIS is a GREAT topic, thanks Emmi.

 

I have learned to be more patient and enjoy my family and friends even more. I try not to take anyone or anything for granted and really try to look at the bright side of things verses the negative side. I really try to view this as "We all have something" may it be diabetes or any other disease and try not to feel sorry for myself. I just try to stay on top of the changes that are going on with me and read up on Scleroderma as much as I can.

 

I have a strong faith that keeps me going. We do have so many things to be grateful for. :D


Take care and stay warm,

 

Michelle

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What a great idea. And looking on the bright side, I've been enjoying as much as I can out of life, doing things I might not have "had the time for" in the past, making time for fun and outdoor walking to enjoy the fresh air, and the freedom to be selfish to do things that I want to, no matter how small a thing.

:-)

Annie N

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Fantastic thread!!!

 

I'm totally in agreement with everything... Diagnosed with Diffuse in Jan '07 gave me little time to learn to appreciate anything, but find humor I did. I look like I've had a face lift, my cellulite is gone and I'm perky again at 50!

 

I did not come by this easy, I had all of you wonderful people to inspire me and give me a more positive outlook. I did not believe any of you when you told me that it would get easier and that I would look back on my first year and realize that it wasn't near as bad or scary as I'd imagined... boy was I proven wrong!

 

Thank you everyone for just being out there in cyberspace, just in case I need you!

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