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Do you feel that having Scleroderma has changed you as a person?


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#21 truman

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Posted 30 July 2008 - 01:34 AM

Smurfette:

"I try to be informed but not focus on my disease as a vocation. "

That should be the top oath of this disease; the very stand alone statement. It's funny how one moves on to different jobs, careers and even marriages and some of those choices can be the worst decisions of one's life. I have, through some of those worst choices, come away with new people and friends in my life I otherwise would never have met in a lifetime! Just to have connected with the wonderful people here, and dear Sadie/Suzi. Sometimes, things happen for a reason.
Tru

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

#22 Sam

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Posted 30 July 2008 - 03:02 AM

Yes I ahve changed in so many ways and I keep changing. As I get older I know now that I shouldn't sweat the small stuff anymore. I was diagnosis at in 1996 but when I was in my 20's I had three small children and I thought I was going to die then. That is when I was first diagnosis and really knew nothing about scleroderma or even lupus. They thought I was going to have lupus. It was hard raising children and I did it myself. Then I got married and then I was raising them my self again. I have gone through so much and even with the kids. I had two boys and they gave me problems all the time.. My oldest and I bumped head big time. He was physical to me on many occasssions. For my children now they are grown up and now respect me alot. Especially my olderst son. He did apoligzed for everything he has done to make my life miserable but he said you kept plugging away. He told me a few months ago that I did a great job raising him and his brother and sister. That is ll I have always wanted to hear. Because at times I felt like a failure. I felt like I couldn't give my children what some children could have. My children never went with our food or clothes. But now they realize that you can't have everything under the sun and roof. That you have to work hard for what you want. Well Yes my life has changed in so many ways. And it will continue to change for the better...
Sam

#23 razz

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Posted 30 July 2008 - 06:09 AM

Smurfette,

I should say that scleroderma is multi-faceted. It is a process. We undergo so many feelings and changes. My condition was aggressive and fast moving. Within 4 months of my diagnosis I was bedridden and could no longer work. Another 8 months later I had lost 60 pounds, down to a mere 85 pounds.

For me it started with:

Disbelief: I can't believe this is happening to me. (followed by)

Denial: There must be a mistake.

Fear: What am I going to do? How will I support myself and family?

Sadness: I felt so alone

Depression: I felt extremely, excessively sad.

Anger: Why me? This isn't fair.

To finally,

Acceptance: I have to deal with this.

Hope: There has to be something that will help me.

Endurance: I will hang in there as long as I can.

Strength: I will beat this disease.

Peace: After finding the right medication and doctor, I feel better now. I like who I am. I've accepted what I cannot change. I don't sweat the small stuff. I see the things that matter. I live each day as if it's my last.

Patience: I am more patient with myself and others. Be it in traffic, at the store or with family members.

Happiness: I am content with the new me. I know my body is just the coat I wear. I am still the same person inside. My beliefs, thoughts, love, feelings, are all the same. I know I will be okay and so does my family.


Razz


:)
Live well, Laugh often, Love much

#24 Sweet

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Posted 30 July 2008 - 06:11 AM

Razz,

I love what you wrote. I'm going to print it out and look at it often.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#25 razz

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Posted 30 July 2008 - 06:18 AM

Thanks Sweet! It is all so true. It is a process.....



Razz

:)
Live well, Laugh often, Love much

#26 JJ-Knitter

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Posted 30 July 2008 - 11:52 AM

Changes? Yes. Both for the better and the worse~ The one really good change is that I seem to be developing a fairly wacky sense of humor. If you don't laugh, you might cry! For the worse? Well, the "leave me alone, I just want to crawl in my shell" times. It's hard enough on our family and friends, as it is, but shutting them out is not good. However, there are times when it takes all your energy just to deal with yourself, never mind anyone or anything else.

I'm incredibly fortunate in my F&F's. The statistics on the # of husbands who stick by chronically ill wives are pretty awful. I don't think anyone has ever done a study to determine the number of friends who just walk away~ Fear (and sometimes experience) of all that makes a lot of us secretive about how we really are doing, maybe a bit paranoid, and definitely less trusting. How often has someone we should be able to be honest with said "How are you doing?" and we reply "Oh, just fine!" when the answer should be "I feel like I've been run over by a truck. Did you get the license plate so I can sue the driver?"

Maybe the one thing a lot of us will find out about ourselves is that we are a lot stronger than we thought we were.

#27 smurfette

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Posted 30 July 2008 - 02:32 PM

Razz--
Thank you so much for you wisdom! I love what you wrote. I appreciate what everyone has written-- it has meant so much to hear what everyone has shared. We are truly a community of individuals who have remarkable and thoughtful perspectives. I am learning so much from all of you.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#28 Denelle

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Posted 31 July 2008 - 05:04 PM

Hello,

I have a different take on this. Diagnosis, living with the disease, transplant, post transplant... I went from a dark place to a wonderful place that is full of HOPE. I appreciate all of the friends and family that I have. I try to work on making true and meaningful relationships. I understand that it is important to cultivate your relationships. I feel grateful for my experiences. People call me brave, but it was just what I needed to do for me!!!

This journey has been fraught with dilemmas. And that is not over... but now I have HOPE.

I do believe this disease has changed me. But having this transplant may have changed me even more. The changes are both positive and negative. I have learned (for the most part) to accept myself for me. I am determined to live life to the fullest; I have been given a second chance and I don't want to blow it. I try to be more understanding of others... we don't always know the whole story.

Aloha,
Denelle

#29 YFChoice

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Posted 01 August 2008 - 05:13 PM

After 26 years of having SD and lupus, I can now say that I am in a better place than ever before. Having a potentially debilitating and/or fatal disease forces you to change. It forces you to look inward and find out what kind of a person you are. That can be scary. Many people won't or can't do it. I think they change for the worse. They don't deal with the disease either well or at all. That decision decides how others look at and treat them. It's a decision only you can make. Only you can decide how you're going to live your life. And you do have to consider influences of daily life...family, friends and job. That can be frustrating and depressing.

I first went thru the denials, anger, etc. that Razz described and I was not doing well. But I was also in a marriage that was best described as "waiting for me to die." And I had a job that did not allow me to take off when I needed to. About 11 years ago, I realized that I was not who I was supposed to or wanted to be. I had let too many influences bring me down like an anchor on a sinking ship. So, I did what I had to do to save me. I made changes. I married a new wife, moved to a new state and got a new job (retiring from my old one).

Skip forward to today. I am 52. I am more laidback and patient. Small things simply do not bother me. I am more tolerant of people.....most of the time. I have found out how incredibly strong I am, physically, mentally, spiritually. In the last 10 years I have survived a heart attack and 2 car/bicycle accidents. I have endured 3 chemo treatments and am looking at another one soon. Today, in my garden, a bee stung me. And yet, this decade has been the best of my adult life. I have finally stopped to smell the flowers, hike the mountains, take a nap, play with my grandsons (ages 3 and almost 2) and kiss my wife.

SD has changed me. Change can be good. For now it's all good. Life is what you make it. Do your life well.

On Tuesday, my wife and soulmate (who also has SD - 15 years) will celebrate 10 years of marriage. For better or worse.......that I wouldn't change.
~ You have to think anyway.....you might as well think big

#30 smurfette

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Posted 01 August 2008 - 06:42 PM

Dear YFChoice,
What a great story - the more I hear the more I believe that things happen for a reason. I keep reading these amazing stories about all of you strong, courageous and amazing people who have managed to come to grips with their disease and have decided to face it and deal with it. No one has come across as a "Pollyanna" but so many of you have decided to realistically live as positively one day at a time. We all certainly have "those days" when our disease lets us know it can turn our world upside down, but we all push back whether by lending support to other forum members or by getting up the next day, brushing ourselves off and going forward ourselves. I am awed and honored by the company I am keeping on this board.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#31 truman

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Posted 01 August 2008 - 09:30 PM

So true, Smurfette, so true. Basically it is what it is and living each day as it comes. Change what we can change, get on with our lives and enjoy, enjoy, enjoy.
Tru

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

#32 Annie N

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Posted 02 August 2008 - 06:31 AM

This has been an incredible thread. I feel and felt all the things everyone wrote. The self hate for not being able to do what I "should" do, the learning to make adaptions, the painful telling to my children, the fury at being at this disease's mercy and seeing doctors all the time, the strength to research and try and help myself, the power of a group like this to make me feel so not along, the hating to ask for help and then just asking anyway, the realization that if I let myself rest I will feel better and be better, the appreciation for all days, not just nice days or pretty days and of my precious moments with my children and grandchildren.
Thanks to you, Smurfette, for bringing it up, and to everyone who wrote, making me feel less alone.

Annie N.
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#33 Kamlesh

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Posted 08 August 2008 - 07:27 AM

All,
I have been less active these days due to several reasons, but I felt I have to respond to this topic.

This is a great topic and has provided me so much encouragement to stay upbeat.

Talking about scleroderma, it did change my life drastically in so many ways. I was going downhill since 2001 when I left job with a company I was for 19 years. But, when in 2005 I was diagnosed with Scleroderma, it was a perfect storm in my life at all fronts. I was hit at the same time, scleroderma, severe acid reflux, diabetes, severe depression, and sleep disorder. On top of that I was very dissatisfied with my job, moved to CA myself and gone through severe financial losses.

After all these, I truly believe Scleroderma has made me a better person. I stay in a “present moment” every single moment. I do not regret about any past events or do not fear for any future events.

Scleroderma has taught me valuable lessons –what life is all about. I am glad my scleroderma is in remission. I hope it will last longer.

On a bright side, I am definitely mentally very strong person than before. I have developed strong respect for life as I am living on a uncertain health conditions. This helped me decide on high risk surgery for my acid reflux. Now, I am mentally at peace, and do my best to celebrate every moment I have. As mentioned in one of the popular movie “I need to continue to breath, as I don’t know what next breath will bring”

I would not say everything is great. I continue to struggle with fatigue, depression, sleep disorder, and lung issues. There are days when simply I don’t want to get out of bed or collapse to bed after getting back from work. But, overall I have gained a lot from my scleroderma experience.
Kind regards,

Kamlesh


#34 tintin

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Posted 09 August 2008 - 03:52 AM

When I was in high school I accompanied one of my friends to their house after school. When we got there I meet his mother for the first time. She was obviously very ill, and started yelling at him from the top of stairs. She had lupus and had been waiting for some time for the help she needed.

A year later when she need regular help I was surprised to find out that she remembered me, and asked if I would be interested in helping her after school. So for a little while before she died I helped her. She was a wonderful person, and although she could fly into a rage when she was tired and in pain, it never prevented me from seeing who she was underneath. She was interesting and had a lot of good stories.

I don't think she knew that everyone still loved and admired her. No one expects people to be perfect when they are sick.
keep on smiling

crawler

#35 debonair susie

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Posted 19 August 2008 - 04:06 AM

crawler,

Relating your story from high school reminded me of my best friend's mom.

I also knew she was very sick, but I "thought" she had a blood disease, when in fact...she also had/has Scleroderma.
She wore white gloves because she needed protection for her hands. She already lost several digits...fingers AND toes, due to Raynauds. At that time, there weren't the meds available that there are now.

There were three of us who were "constants" at her home, to help with housework.
She was always like a second mom to me...Now, she has Alzheimers Disease, along withher Diffuse Sclero.

Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#36 smurfette

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Posted 19 August 2008 - 06:20 AM

It is said that a society s judged by how it cares for its most helpless (I am paraphrasing). The members of this board have cared for others before getting sick. It is clear to me that so many of you are what is right in our society - kinder, more understanding, less judgmental and critical and more willing to take the time to help and care. Each time I read a thread like this I am more and more impressed by the quality of the people on this forum and are humbled to be among you.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#37 Peggy

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Posted 19 August 2008 - 08:25 AM

You are one of the reasons I keep coming back here........................you should look in the mirror and you will see a person who is so very kind, caring, and always willing to lend a hand in trying to help..........................we are blessed to have you here!

Warm hugs,

Peggy