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  1. I recently returned from a 2,400 mile round trip road trip with my husband to attend the wedding of a good friend's daughter. It was wonderful, a country barbecue, very different from the over-the-top extravaganzas held where I live. This trip would have been impossible for me in the past, between fatigue and dialysis and I am thrilled that I was able to do it! At the wedding I met a man I had heard about for years through our friend and other mutual friends. The stories I heard were very interesting. I knew he had his legs amputated and had a handicapped accessible van for his wheelchair. I knew he was a heavy smoker and spent the morning rolling cigarettes to smoke all day. I knew he was a heavy drinker and partier. So you can imagine the tales that were told...man in a handicapped van driving down the road drinking and smoking. What I didn't know was that he has scleroderma. Besides both legs being amputated below the knees he only has his thumb and pinkie on his right hand which he uses to control his wheelchair. He has several fingers missing on his left hand at different joints and has a colostomy. We did not discuss anything at the wedding except for him saying "I heard you have had a rough time, too." Later I learned more through talking with him and our good friend and was able to put these pieces together: He was diagnosed in 1995 with scleroderma because of finger ulcers . He doctors told him he would have to quit smoking and out and out refused to. One of the first doctors he went to would not treat him and told him he would not be the one to cut him piece by piece if he did not stop smoking. He has had multiple amputations, upwards of more than 20. He has had to have sections of his colon removed, therefore the colostomy. He spends his morning rolling his cigarettes for the day, equal to 2-3 packs. How he manages to do this the way his hands are is beyond me! How he manages to hold a cigarette is beyond me as well! He is incredibly mobile and maneuvers his wheelchair everywhere, even over very bumpy ground, with a beer in his left hand (what is left of it.) He has painted his fence red, white, and blue by himself and takes great pride in it. Again, I marvel at how he holds a brush! He has a prothesis for his leg so he can drive his van. He has a great sense of humor and a positive attitude, he dwells on what he can accomplish not on what has been taken away from him. Not once did him complain. He was always smiling (could be the beer :D .) It was inspiring and very, very sad at the same time. The people around him who love him, his friends, wife and family, are watching him destroy his body in addition to what the disease does. He has a wonderful spirit but his addiction has taken over. For me, there are several lessons to be learned from his story: 1. It is possible to face adversity with a positive attitude. 2. Even with major physical limitations, you can do the things you really want to do. 3. Be compliant, especially about the things you know will control your disease. 4. The choices you make affect the people who love and care about you. Just had to share... miocean
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