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Jeannie McClelland

What ability would you most want to keep?

32 posts in this topic

Great question Jeannie. I have found myself thinking about "worst case scenario" and the things I will really miss if I lost them. I suppose the worst for me would be my ability to find pleasure and joy somewhere in my day. Without that, life just becomes a chore. I am not wanting more loss of functioning, but the best that I can do is keep focusing on the things I can do, working around the things that are difficult so I can do them in some capacity, and finding joy in as many things a day as I can.

 

It can really crank on my fears to read about what can go wrong with this disease. I do keep reading in small portions because knowledge and information are important. However, I refuse to lie down and die just because I have this disease that might incapacitate me tomorrow. I am alive and kicking today, and for that I am grateful. More than anything, I think this getting this diagnosis has really tuned me into living life in the moment and being fully present at every chance. There may not be as many chances as I had thought there would be.

 

Jill

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I have to agree with many of you - energy and stamina. I have 5 and 8 year old boys and I do worry about being able to take care of them and doing things with them. So tired all the time.

 

Next would be my eyes. My eyes are red, dry and uncomfortable, though the vision hasn't changed much. Just can't wear my contacts anymore.

 

Bless you all.

Michelle

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I have just been newly diagnosed, and I already thought about this very same question. I guess, if I ever get to the point where I would loose the ability to interact or work with animals, that would be the worst. That's something I never want to give up. Honestly, I don't care how I will look like, how tired I am or if my diet would be very limited, but I could not lose my purpose in life. That would be detrimental and it is my biggest fear.

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Eos, I can completely understand where you are coming from. I was misdiagnosed with asthma to begin with and was told that if I got rid of my animals, everything would be just fine. Finding out that I had scleroderma was actually a relief - I couldn't have gotten rid of my 'girls'.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi everyone, wonderful answers. Loved reading them all.

 

I have had localized scleroderma for 13 years now, and I'm in a pretty good condition but it's getting worse all the time: the skin is getting tighter around my left ankle and everywhere else on the left side of my body. To me, losing the ability to move would probably be the worst thing to happen, as I love dancing a lot. That's my way to forget my troubles and sorrows. I take ballet lessons, I teach dancing and if I have enough spoons I join my friends to clubs sometimes just to dance dance dance till the end of the night. It's my way to express myself, my way to relax. If there should be a day when I can not dance any more, I don't know what I'd do.

 

Emmi

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Most definitely stamina and the ability to breathe! I can't even walk up a flight of stairs without having to stop 1/2 way. I tried going to 6 flags with my family today and I couldn't even make it up a small hill. Truly a bummer.


~ Teresa~

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It took a while for me to think this one up. Yep I think remembering is what bothers me most. I don't know how much of this is age related. That is beginning to be a problem. I lose stuff, material things and that's not all. I lose words and things I learned years ago. This year I have to take the written test to renew my driver's license. Frightening!! What if I have a losing problem. What if my memory is uncooperative then. And tension makes things worse. I don't think it impairs my driving but I guess it could. There is one good aspect of selective memory. That is I can watch reruns on TV, recognize that I have seen the program before but don't remember enough about it to keep me enjoying it as it might as well be a new program.

Thinking, that is the problem.

Betty

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