Guest guest Posted July 25, 2009 Report Share Posted July 25, 2009 Hi, I don't post a whole lot but I read everything..This is one of those times I just wanted to share my thoughts..being thankful for CMT for some is like embracing it so that they can accept it better.. I feel that we all have our own way of dealing with CMT. It can be mentally debilitating as well if we let it. We all need to feel what is best for us. BTW Monkia what part of Jersey are you from? I am from Long Branch orginally. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Im thankful for CMT and I have CMT 1X .Im thankful because I would not be the person I am today with out having the disese. I cant feel sorry for myself. I just look to God because he strengthens me each day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 lokd on wait few hours till drug your are on wears off -- then talk to me.. I was happy to be alife while morphenie drip was in my vain,,, oh and percocet , make sme so happy sincerly drug free Monika from NJ From: fittness35 <wahr@...> Subject: Re: thankful for CMT Date: Saturday, July 25, 2009, 7:35 PM Im thankful for CMT and I have CMT 1X .Im thankful because I would not be the person I am today with out having the disese. I cant feel sorry for myself. I just look to God because he strengthens me each day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 hi Carol, in in Cherry HIil, From: Cpasko45@... <Cpasko45@...> Subject: Re: thankful for CMT Date: Saturday, July 25, 2009, 8:29 PM Hi, I don't post a whole lot but I read everything.. This is one of those times I just wanted to share my thoughts..being thankful for CMT for some is like embracing it so that they can accept it better.. I feel that we all have our own way of dealing with CMT. It can be mentally debilitating as well if we let it. We all need to feel what is best for us. BTW Monkia what part of Jersey are you from? I am from Long Branch orginally. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 All, I rarely comment, but this topic is just so laden with potential pain and misunderstandings, that I thought I might tell a bit of my journey with CMT. My CMT did not really start becoming debilitating until I was in my late 30's. Prior to that, I was able to " do the zoo " , which was about 3-4 miles. I had worked so hard all my life to keep it hidden, and when I started needing a hiking staff to keep my balance, I was mortified. Thankful for CMT? No stinkin' way... I was desperately ashamed of having it. Long, long, long story, but through coming to faith in my creator and through an experience of peer counseling by other people with disabilities, I came to accept my disability, and to love myself. Having CMT sucks, at times. But, I I am thankful for it, too. Before my CMT affected my life, I was a shallow person and didn't give much thought to my creator or to serving other people. I am now ministering in a church and am leading a life that is making an impact to better the world. I have enormous regard for myself and am strong in ways I attribute solely to CMT. I'm not thankful for the emotional/psychological, relational, financial, physical pain of CMT, but I am deeply grateful for the results... I am a person of character, compassion, and grace because of learning to accept CMT and what it has tought me about humility, my need for interdependence with other people, and about the nature of my creator. I only offer this as one woman's perspective... and would never say that others should be thankful, too. We all have the right to feel how we feel and have good reasons for that. However, it is my hope that my witness might give hope to others who are suffering emotionally and spiritually. All my Best, Lynna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 I am thankful for the friendships I've developed as a result of participating on CMT forums. I am thankful that I have CMT rather than ALS. If my children suffered severely from it, though, I would most likely see no redeeming feature. I am also very fortunate to not have pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Wow! this topic sure sparked a lot of spirited debate. I think that is good, that's why we're here. I have a love/hate relationship with CMT. I'm " happy " about it because for a while I thought I had Multiple Sclerosis, CMT: definitely better. I also thought for years that I was probably lazy and uncoordinated like I was accused by the other kids, so it's really nice to know there is a reason and that I'm not alone. I hate it because it is a pain, literally, and makes me feel old before my time. I have 3 kids, 2 of them are definitely affected. They are all great kids with very mild issues, like I was at their age. Of course I made the decision to have them before I knew about CMT, but I'm glad because I may have debated and I can't imagine life without them -- and they are really fine and happy. I also very much hope I'll have grandchildren someday. This gene has been in the family for many, many generations (it's easy to trace it backwards now that we know) and we have been a strong, productive family even though we have to try a little harder. Holli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Hello Holli You are right. This topic certainly garnered a lot of feedback, and it was interesting to read all of the various opinions expressed. I don't have any children, but knowing that I do have this disease, I would not go ahead and spread this gene any further. It is unfortunate, since I would love to leave an heir and carry on the family name, but I could not in good conscious take the chance that I would subject my children to this disease. If there was a cure, or very effective treatments that could dramatically improve the quality of life for those afflicted with this disabling malady, then perhaps I'd take a chance. You are very lucky to have happy children. Perhaps in their lifetime a cure and or therapies will be created which will make their day to day lives much more enjoyable. God bless you for sharing on this topic as well. Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Hey!!! I am thankful because I see things different know that I have a diagnosis, which I didn't have until 2 1/2 years ago. I look back and I see someone who was afraid to step out and do things, and nobody really understood the emotional pain of being laughed at, called names, and generally had a hard time. I now work with the learning disabled because being disabled myself, I feel I can better understand what they are going through. I was not diagnosed until after my children were born. I have two kids, a boy and girl, (who do not have it), but I think I would have had them anyway. Nina from Stockton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Holli, You really made me feel good when you said this. I really enjoy your positive attitude and love for life. Thank you for lifting my spirits today In a message dated 7/26/2009 11:03:38 A.M. Pacific Daylight Time, hmm_md@... writes: This gene has been in the family for many, many generations (it's easy to trace it backwards now that we know) and we have been a strong, productive family even though we have to try a little harder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 I have never felt sorry for myself. I am not sure why I guess its just not in my nature to feel that way. Stuff just happens I don't take CMT personally. Maybe that is why I don't have " why me? " feelings. I do have the dang " I wish this was different " attitude. We always want better for our children. In a message dated 7/26/2009 9:02:03 A.M. Pacific Daylight Time, wahr@... writes: I went to a counsler before because I felt sorry for my self and did not know how to deal with my disability. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 My sentiments exactly, . I would rather I had this then any of my sisters, if I had to choose, I would rather that no one had CMT! I can handle it for myself, but I pray everyday that my son is not affected. Would I have made a different choice had I known that I could have passed this along, I don't know. I don't do the why me, but sometimes I wonder what life would be like if I did not have this. Would I be a natural athelete? When I have days that I fall, I do say " darn, this thing gets in my way! " I do believe that CMT has strenthened my personality. I was always aware of others and cared enough to help, but CMT makes it more prominent. My attitude with life: " It is what it is " and I deal with life's curves as it happens, but no, I am not grateful I have CMT, but then again I was not grateful I had postpartum depression either (LOL) Jackie Quote Link to comment Share on other sites More sharing options...
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