Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 Hi Mylah, I love what you said: " For now, I just do what I can do and try to live my life to the fullest. " It's inspirational. Since CMT is a progressive disease, we are continually faced with new challenges. As time goes by, we encounter new symptoms and new difficulties. The better we are able to adapt to our new circumstances, the better our health will be and the longer we are likely to live. (Studies have shown that the people who live the longest are those who are best able to adapt to change.) I find being part of a group discussion board like this one really helps me adapt. Seeing the detail of how others are coping, makes my own adjustments easier. As an example, I was fearful of ending up in a wheelchair, but then I learned about the many people in wheelchairs who are doing very well and leading active lives, including travelling! If you have any concerns about any activity, including tips for making traveling easier, you are welcome to post it to the group and you will get lots of advice and recommendations. Stress can be very bad for us and worrying about things is stress! So, it's great that you have such a positive attitude! It really makes a difference. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Mylah, That's the spirit! I have all of the same symptoms you do. I still travel. A wheelchair comes in handy sometimes so I don't get too fatigued. This year, I have already been to Chicago and Puerto Vallarta, where I went whale watching on a sailboat. I also continue to play music professionally even though my hands don't like the piano as much as they used to. I am still able to play my other instruments fairly well. Orthotics have helped me with my feet somewhat. I like xtreme janes from Ecco and Keens as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 I second what said. I don't have two colored eyes - I'm here to learn, so please excuse my butting in, but I'd like to say something. First of all, you should not have been raised to be ashamed of your eyes. My son was born with a moderately severe cleft lip, gum and hard and soft palates. At 16, his nose is slewn (is that a word?) off to the left. But he's not ashamed. Yes, his nose will be fixed when he is done growing, but not so that society will think he's more handsome, but because the septum is severely deviated and it needs to be corrected. takes it all in stride and enjoys the way he looks. We are all different, thank God, and should celebrate that. If I were you, I would let my boyfriend see my beautiful eyes! I would show them to him with pride! My sister is Lakota Sioux. In the Lakota culture, you would be celebrated as having been personally chosen by Wakan Tanka (God/Creator). Now, they have the right idea!        Best Selling Author of Son of My Soul - The Adoption of , A Very Special Child - An Adoption Story - co-author Jesus Gandhi Oma Mae "; scribe for Bullfrog Catcher http://www.DebraShiveleyWelch.netI firmly believe that I have received the same child I was meant to receive whether I gave birth or adopted. The same soul, the same entity was meant to be mine from the beginning of time. Debra Shiveley Welch "A Very Special Child" -- Experiences I am 61 years old and I have a blue eye and a brown eye with a small flick of blue I am still very uncomfortable with my eyes being different, my entire life people have stared at me like I am a freak it made me resort to wearing color contacts to camouflage the blue eye so it looks almost brown, I feel like I am being deceiving, the man I have been dating for 3 years has never seen me without contacts.I really admire the young people in this group that are proud of their eyes and should be, I was never taught that growing up I was made to feel ashamed of mine and it has stuck with me all of my life....We never talked about my eyes when I was growing up I was or what caused it......Is their anyone else in the group that is older like myself? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi, Thanks for the nice words to the young folks. I think it's pretty cool you have different colored eyes ~ sorry to hear you were made to feel ashamed of them. You know, you're unique! Take care. > > I am 61 years old and I have a blue eye and a brown eye with a small > flick of blue I am still very uncomfortable with my eyes being > different, my entire life people have stared at me like I am a freak > it made me resort to wearing color contacts to camouflage the blue eye > so it looks almost brown, I feel like I am being deceiving, the man I > have been dating for 3 years has never seen me without contacts. > > I really admire the young people in this group that are proud of their > eyes and should be, I was never taught that growing up I was made to > feel ashamed of mine and it has stuck with me all of my life....We > never talked about my eyes when I was growing up I was or what caused > it...... > Is their anyone else in the group that is older like myself? > Quote Link to comment Share on other sites More sharing options...
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