smurfette

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

37 posts in this topic

I am almost 2-1/2 years into this, and I see many changes already.

 

I am

 

* way more patient with family, doctors, myself, and the disease

* much more protective of my own mental and physical strength

 

I am

* less concerned with the opinions of others

* more empathetic to the pain of others - pain is pain

 

I am

* less concerned about "stuff" - who has what and how much - (we'll get that new carpet someday)

* more patient with the strange behaviors of others - if "getting their anger on" is their coping mechanisms, what do I care?

 

I am

* more dependent on my husband's state-of mind - if he is stressed, I feel lost. I have to work on this one!

 

 

I wonder if this is the list I would have written earlier, when I was still grieving over the impact on my life plans.

I wonder what the list will look like 10 years from now.

 

-Always RTS

:rolleyes:

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And one more thing -

 

I've become a very list driven person. Never was before. Before I only wrote lists to organize my thoughts/activities. Never to check off progress....

 

But now, I constantly write the smallest tasks on paper cubes - those blocks of small size paper for jotting notes. Writing the tasks down gets them off my mind and I feel like I am moving forward when I tear a page off and throw it away.

 

-RTS

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Even if I will try to do everything to "repair" my disease (i have localized), I now know that I am NOT untouchable.

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This is such a fascinating thread. The more people contribute, the more I think about it. I cannot thank all the contributors enough. It really has made me examine what having this disease has done to me and how I react to others and in truth, I do believe it has made me a more thoughtful person. I still have my moments, but I think that I have had to re-examine my priorities and as a result it keeps my real values, the ones that are at my core, front and center. It is very easy to lose sight of them when you are living a fast paced existence. It has made me slow down and appreciate people, understand others and try to forgive them.

 

I am by no means perfect, but I think that I have become more real. It does not mean that when I spot someone who is abusing my good nature that I don't let them have it - I do. I still do not suffer fools very well. That part of me is still very much alive and kicking. But in general I try to work through my disease, keep on trucking and appreciate what I have rather than wish for what I don't have and resent what I cannot get. I value my family and friends more and am more open with my appreciation. I know that time is finite. I know that pain is real and no one can judge what hurts someone else. I try to be informed but not focus on my disease as a vocation.

 

If it is possible the disease has an up as well as an obvious down side.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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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...........

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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

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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

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

 

 

 

Razz

 

:)


Live well, Laugh often, Love much

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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.

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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!

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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

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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

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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!

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