Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 Helene, Instead of asking " Why me? " How about " Why NOT me? " Just a thought. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Dear : It was a medical emergency - the doctor always instructs the staff where they can be reached on vacation - the staff probably "didn't want to bother them on vacation" which is wrong - the doctor always wants to know if something goes wrong after surgery! I hope you will let the doctor know what happened - somebody else could sue them one day in a similar situation. I hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2001 Report Share Posted May 9, 2001 Thanks for the advice. I just had an endoscopy this morning and they did a dilitation on the pyloric sphincter becausse it was blocked and my stomach wasn't emptying. I had my internalist do it, instead of the so called expert on achalasia that did my surgery. I still have not heard one word from them about follow up. I do however intend to follow up and get my records. I want to know why all this happened like this. >From: joecoolrn@... >Reply-achalasia >achalasia >Subject: RE: why me? >Date: Sun, 06 May 2001 14:00:31 -0000 > > > I do not know what your doctor's office was thinking the GI system >is very vascular and a hematoma after surgery could have been serious. > Ask you doctor if you have had a pyloroplasty or a vagotomy with >your myotomy and wrap. This procedure opens the pyloric sphincter at >the end of your stomach making stomach emptying easier. > Most people do not realize that you can order a copy of your >medical records including all operative reports from the hospital >medical records department, they may charge a small fee, but having a >copy of the reports can be very helpful in understanding just what >they did to you during surgery. > I have never had a myotomy, my achalasia was so advanced that I >needed an esophagectomy, a removal of my entire esophagus and >replacment with my stomach. I have copies of all the inter-hospital >reports, including lab results, it's my health and I want to be >informed. > >I hope this helps > > >Joe > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 > Hi all, Why me, is a question I've been asking alot lately. I've lived > with achalasia for 20 years , I am so sorry you are having such a bad time! 20 years is a long time to go through this! It has only been about 3 years for me, and I feel like that's too much! so far I have only had 5 endoscopic dilatations, the last one a balloon type because the others did no good. It was much more painful, and I was worried something had gone wrong, but after a few weeks, and for a couple of months it was like going back to the beginning of the disease. I was able to eat several things I could not eat anymore, but unfortunately it is getting worse again, and now I am facing the myotomy. I am procrastinating, I have read many good experiences with other people, and know I have to go soon, but the whole idea of going to the hospital again, yuck! I have really bad memory loss from the anasthetic, which according to the anethsatist (bad spelling I know!) is normal, but I hate it! I feel like I lose a month of my life every time! so in the last 12 months, I feel like I've lost 5. Anyway, take care, I hope you are better soon, remember the squeeky wheel gets the greace, and if you feel like something is wrong, persist!! they will figure it out sooner or later! take care, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Why not me? ----- Original Message ----- From: Gretchen Glick Sent: Sunday, January 13, 2002 9:50 PM Subject: [] Why me? Dave, I no longer ask the " why me " question, but plead " give me the strength and grace to accept this and go on " ~ G numbthumb2 wrote: > Remember we all ask the question : " Why me God? " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Gretchen, That is a very true statement. We all have problems, and occurrences in our lives which we do not understand. In my household it has been quiet recent with the sudden death of my sons girlfriend. She died in a car accident on Dec. 23rd.....she was 18 years old. Although, we do not understand why certain things happen; life goes on. We have to go on the best way we know how. It is not easy by any means. ----- Original Message ----- From: " Gretchen Glick " <liliwigg@...> < > Sent: Sunday, January 13, 2002 6:35 PM Subject: [] Why me? > Dave, I no longer ask the " why me " question, but plead " give me the > strength and grace to accept this and go on " ~ G > > numbthumb2 wrote: > > Remember we all ask the question : " Why me God? " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Golly, I sure didn't mean to start something else (Again)! All I meant was " I THOUGHT, we all had said " " Why Me? " At one time or another. It appears I am the only one who has thought that. Sorry Debbie... Dave > Very true Rocky. > Why not me? > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 No Dave you haven't started something else (again). And I bet that there isn't really one of us who when things have been really bad haven't asked why me? We're all entitled to our thoughts and opinions especially as we do share so much. You take special care my friend Love and hugs Sue X The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: numbthumb2 Sent: Monday, January 14, 2002 4:17 PM Subject: [] Re: Why Me? Golly, I sure didn't mean to start something else (Again)! All I meant was " I THOUGHT, we all had said " " Why Me? " At one time or another. It appears I am the only one who has thought that. Sorry Debbie... Dave > Very true Rocky. > Why not me? > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Hello Dave I have thought that too (why me) but then I thought why not me ,and I had no answer to that one either! For me it kind of cancelled out the first question ? People won't touch the question (I think) because it is approaching god talk (not allowed) It is a great question--and if by starting something you mean a good decision, Then I agree you have done it again. Even when people don't respond, they often read and think about it~! Rocky ----- Original Message ----- From: numbthumb2 Sent: Monday, January 14, 2002 11:26 AM Subject: [] Re: Why Me? Golly, I sure didn't mean to start something else (Again)! All I meant was " I THOUGHT, we all had said " " Why Me? " At one time or another. It appears I am the only one who has thought that. Sorry Debbie... Dave > Very true Rocky. > Why not me? > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Hi - I generally don't ask the why me question?? I think if I had a diagnosis earlier in life I would have, maybe. I never really missed what I didn't have, like running, etc. I think what I 'm going through now is the Oh...that's why I couldn't....run, skip, bend my knees, etc. In all, I'd say being in these email groups has ehlped withe other question - what next?? Martha in Billerica Hello Dave I have thought that too (why me) but then I thought why not me ,and I had no answer to that one either! For me it kind of cancelled out the first question ? People won't touch the question (I think) because it is approaching god talk (not allowed) It is a great question--and if by starting something you mean a good decision, Then I agree you have done it again. Even when people don't respond, they often read and think about it~! Rocky ----- Original Message ----- From: numbthumb2 Sent: Monday, January 14, 2002 11:26 AM Subject: [] Re: Why Me? Golly, I sure didn't mean to start something else (Again)! All I meant was " I THOUGHT, we all had said " " Why Me? " At one time or another. It appears I am the only one who has thought that. Sorry Debbie... Dave > Very true Rocky. > Why not me? > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Thanks Rocky! For the well thought out response, I always enjoy reading how others really feel, but I do grow weary of some of the foolishness, the flippant answers some use only reinforces notions I already have about some individuals. I do love debate in some discussions, but mainly I love to learn, hopefully so I won't make the same mistake another made. And boy are you right about " God Talk " , I can clear a room real quick by simply asking a few biblical questions! It sounds like you understand that as well. I have struggled with CMT, (and as you would know) never seen any kind of improvement over the years. Knowing what I had when I was diagnosed helped me understand all the " why nots " why I couldn't do so many things, though while in south east asia I did things I would never dream of doing now. I have asked God " WHY ME " , never " " why not another " " , just why me, I have asked it, screamed it, even slobbered the question through tears of pain. I know that bad things happen to good people, but I wonder am I being punished for what I did in Vietnam, or as a teenager, what have I done. I know that is not even a question I should ask, but when you are in the depths of despair, or agonizing pain, rational though eludes me. Thanks Rocky for letting me vent... Dave > Hello Dave > I have thought that too (why me) but then I thought why not me ,and I had no answer to that one either! > For me it kind of cancelled out the first question ? > People won't touch the question (I think) because it is approaching god talk (not allowed) > It is a great question--and if by starting something you mean a good decision, Then I agree you have done it again. > Even when people don't respond, they often read and think about it~! > Rocky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 I guess my question was WHY NOW?, after all these years. Not neccesarily why me? I thought why MY son?, when apparently he was the only one out of my Dad's 14 grandchildren. And who knows it may be lurking somewhere in any one of them as it was me. --- Sue Horder-Mason <sue@...> wrote: > No Dave you haven't started something else (again). > And I bet that there isn't really one of us who when > things have been really bad haven't asked why me? > We're all entitled to our thoughts and opinions > especially as we do share so much. > You take special care my friend > Love and hugs > Sue X > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I > have found myself, my work, and my God. " - Helen > Keller > > ----- Original Message ----- > From: numbthumb2 > > Sent: Monday, January 14, 2002 4:17 PM > Subject: [] Re: Why Me? > > > Golly, I sure didn't mean to start something else > (Again)! All I meant > was " I THOUGHT, we all had said " " Why Me? " At one > time or another. It > appears I am the only one who has thought that. > Sorry Debbie... > Dave > > > > Very true Rocky. > > Why not me? > > Love > > Sue > > The important thing is never to stop > questioning. > > Website www.horder-mason.freeserve.co.uk > > Freelance Writer and CMTer > > > > " I Thank God for my handicaps, for through them, > I have found > myself, my work, and my God. " - Helen Keller > > > > > > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Hello Dave Please vent through me anytime, I think sometimes it can help. I can’t reply properly right know because of hands and typing ,painful at the moment! I figure all anyone can expect of themselves is to do what they believe is right -----no one would punish One for that. Don’t judge what happened years ago , and decisions you made then with 20/20 hindsight That would hardly be fair to yourself would it? After all I would hope I would not make the same choices now as when I was a teenager I HAVE LEARNED SOMETHINGS!! I might surprise you with my religious beliefs, but we will never know because we can’t discuss it here and I do understand that, after all there are great sites for just that subject. CMT is such a large issue in many of our lives, and so close to the heart that religious beliefs have a habit of sneaking in.! Can’t type no more!! Thanks very much for the response!!!!!!!!!!!!!!!!! Rocky ----- Original Message ----- From: numbthumb2 Sent: Monday, January 14, 2002 3:51 PM Subject: [] Re: Why Me? Thanks Rocky! For the well thought out response, I always enjoy reading how others really feel, but I do grow weary of some of the foolishness, the flippant answers some use only reinforces notions I already have about some individuals. I do love debate in some discussions, but mainly I love to learn, hopefully so I won't make the same mistake another made. And boy are you right about " God Talk " , I can clear a room real quick by simply asking a few biblical questions! It sounds like you understand that as well. I have struggled with CMT, (and as you would know) never seen any kind of improvement over the years. Knowing what I had when I was diagnosed helped me understand all the " why nots " why I couldn't do so many things, though while in south east asia I did things I would never dream of doing now. I have asked God " WHY ME " , never " " why not another " " , just why me, I have asked it, screamed it, even slobbered the question through tears of pain. I know that bad things happen to good people, but I wonder am I being punished for what I did in Vietnam, or as a teenager, what have I done. I know that is not even a question I should ask, but when you are in the depths of despair, or agonizing pain, rational though eludes me. Thanks Rocky for letting me vent... Dave > Hello Dave > I have thought that too (why me) but then I thought why not me ,and I had no answer to that one either! > For me it kind of cancelled out the first question ? > People won't touch the question (I think) because it is approaching god talk (not allowed) > It is a great question--and if by starting something you mean a good decision, Then I agree you have done it again. > Even when people don't respond, they often read and think about it~! > Rocky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 I agree totally with you and yes I thank God he only gave me CMT but for many of us it is a struggle to get both recognition and acceptance of CMT. But for many of us it's not quite so simple - we are stil fighting for recognition but with diagnosis and with the social security system regardless of which country we live in. that you have this disease. And for some of us yes CMT will kill us but this is part of life's rich tapestry (I like cliches) What many of us are trying to do is to fight to get a fair deal for everyone with CMT but more than that to get this disease recognised so more people can live decently instead of having to struggle and that goes for different countries they live in. I appreciate that you're not happy living with CMT but neither or the rest of us. You only have to read the emails to see the struggle that others have to go through just so they can have a roof over their heads and some food on the table. Yes I agree that you are blessed but many if not most CMTers are not blessed and they are the ones who keep on fighting. Maybe you could help them by giving them advice? You don't say how severe your CMT is but those in a wheelchair who are still trying to prove they have a progressive illness and need help and support would certainly benefit from your expertise. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: cindy kruser Sent: Tuesday, January 15, 2002 12:16 AM Subject: [] Why Me? In response to the dozens of e-mails I read on this topic, I never ask, " Why me? " . I thank God every day for not giving me an even worse burden to bear, like cancer or some other terrible disease. CMT creates a challenge for me, it's not going to kill me. God shut a door in my life when I was diagnosed with CMT, then he opened a window. I am now receiving long term disability benefits, and am home full time. This has enabled me to not only take better care of myself and my family, it has allowed me to " stop and smell the roses " , and appreciate the good things in my life. My 50 hour per week, 22 year career never gave me that luxury. Am I happy that I have this terrible illness? No way! But, I'm dealing with it, as we all are, and trying to make the best out of the situation. I think it's imperative that we focus on the good things in our lives. I am blessed, in spite of CMT. Sorry, I don't mean to be a martyr, this is just the way I feel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Eloquently put Sue...... Dave > I agree totally with you and yes I thank God he only gave me CMT but for many of us it is a struggle to get both recognition and acceptance of CMT. But for many of us it's not quite so simple - we are stil fighting for recognition but with diagnosis and with the social security system regardless of which country we live in. that you have this disease. > And for some of us yes CMT will kill us but this is part of life's rich tapestry (I like cliches) > What many of us are trying to do is to fight to get a fair deal for everyone with CMT but more than that to get this disease recognised so more people can live decently instead of having to struggle and that goes for different countries they live in. > I appreciate that you're not happy living with CMT but neither or the rest of us. You only have to read the emails to see the struggle that others have to go through just so they can have a roof over their heads and some food on the table. > Yes I agree that you are blessed but many if not most CMTers are not blessed and they are the ones who keep on fighting. > Maybe you could help them by giving them advice? > You don't say how severe your CMT is but those in a wheelchair who are still trying to prove they have a progressive illness and need help and support would certainly benefit from your expertise. > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > ----- Original Message ----- > From: cindy kruser > @y... > Sent: Tuesday, January 15, 2002 12:16 AM > Subject: [] Why Me? > > > In response to the dozens of e-mails I read on this topic, I never ask, " Why me? " . I thank God every day for not giving me an even worse burden to bear, like cancer or some other terrible disease. CMT creates a challenge for me, it's not going to kill me. God shut a door in my life when I was diagnosed with CMT, then he opened a window. I am now receiving long term disability benefits, and am home full time. This has enabled me to not only take better care of myself and my family, it has allowed me to " stop and smell the roses " , and appreciate the good things in my life. My 50 hour per week, 22 year career never gave me that luxury. Am I happy that I have this terrible illness? No way! But, I'm dealing with it, as we all are, and trying to make the best out of the situation. I think it's imperative that we focus on the good things in our lives. I am blessed, in spite of CMT. Sorry, I don't mean to be a martyr, this is just the way I feel. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Sue, Perhaps my " goodwill " message was not taken the way it was intended. First of all, there is nothing simple about my life. I struggle everyday, just like everyone else in this group. How can you say that most CMTers are not blessed? You're talking about thousands and thousands of people here. Being blessed is something only an individual can decide for himself . Everyone has blessings in their lives, I don't care how dismal things may seem sometimes. You asked that I might possibly give some advice. My advice is this: Count your blessings, focus and build on them, and the challenges that you deal with may not be as hard to overcome. As far as the severity of my illness goes, I was diagnosed at age 37 with peripheral neuropathy of unknown origin. I'll be 44 next month, and got my first diagnosis of CMT type II just 16 months ago. My lower leg muscles have atrophied and I can barely walk, so I walk with a cane. I am supposed to have AFO's, but have chosen (at least for now) not to have the prescription filled. I suffer with essential tremor of the hands, which medication keeps somewhat in control. I was prescribed Neurontin for severe muscle spasms, but have chosen to do a strength training and stretching program instead, which seems to be doing the trick. I live in Wisconsin and cannot tolerate the cold weather, because when I get cold I cannot move. I can barely hold a pen to sign my name. My hands are wasting away. I am not in a wheelchair yet, but that doesn't make my illness any less real or difficult to endure. I'm a fighter, and am just trying to slow the progression of my illness. The other CMTers in this group DO have my love and support. Also, I don't claim to have any real expertise in the area of CMT in general, just in my own, but I may be of some help to others in pursuing social security benefits, or denied insurance claims. I believe in fighting for what is rightfully mine, and I feel that way for other sufferers of CMT. Before I joined this group, I'd never even known anyone else that had this disease. But, I am trying to get the word out. When someone asks me why I walk with a cane (it amazes me how many people do), I tell them exactly what I have. I swear nobody has ever heard of the disease. It's pretty sad. I'm doing the best I can, and I refuse to be saddened to the point that I lose faith and stop focusing on the positive. ---- Original Message ----- From: Sue Horder-Mason <sue@...> < > Sent: Monday, January 14, 2002 6:49 PM Subject: Re: [] Why Me? > I agree totally with you and yes I thank God he only gave me CMT but for many of us it is a struggle to get both recognition and acceptance of CMT. But for many of us it's not quite so simple - we are stil fighting for recognition but with diagnosis and with the social security system regardless of which country we live in. that you have this disease. > And for some of us yes CMT will kill us but this is part of life's rich tapestry (I like cliches) > What many of us are trying to do is to fight to get a fair deal for everyone with CMT but more than that to get this disease recognised so more people can live decently instead of having to struggle and that goes for different countries they live in. > I appreciate that you're not happy living with CMT but neither or the rest of us. You only have to read the emails to see the struggle that others have to go through just so they can have a roof over their heads and some food on the table. > Yes I agree that you are blessed but many if not most CMTers are not blessed and they are the ones who keep on fighting. > Maybe you could help them by giving them advice? > You don't say how severe your CMT is but those in a wheelchair who are still trying to prove they have a progressive illness and need help and support would certainly benefit from your expertise. > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > ----- Original Message ----- > From: cindy kruser > > Sent: Tuesday, January 15, 2002 12:16 AM > Subject: [] Why Me? > > > In response to the dozens of e-mails I read on this topic, I never ask, " Why me? " . I thank God every day for not giving me an even worse burden to bear, like cancer or some other terrible disease. CMT creates a challenge for me, it's not going to kill me. God shut a door in my life when I was diagnosed with CMT, then he opened a window. I am now receiving long term disability benefits, and am home full time. This has enabled me to not only take better care of myself and my family, it has allowed me to " stop and smell the roses " , and appreciate the good things in my life. My 50 hour per week, 22 year career never gave me that luxury. Am I happy that I have this terrible illness? No way! But, I'm dealing with it, as we all are, and trying to make the best out of the situation. I think it's imperative that we focus on the good things in our lives. I am blessed, in spite of CMT. Sorry, I don't mean to be a martyr, this is just the way I feel. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 HELLO CINDY It's hard to get message acrossed internet. Is it hard for you to type so much!!! My hands sound like yours, I find it hard to type much! I say in response Good for you! Rocky ----- Original Message ----- From: cindy kruser Sent: Monday, January 14, 2002 10:57 PM Subject: Re: [] Why Me? Sue, Perhaps my " goodwill " message was not taken the way it was intended. First of all, there is nothing simple about my life. I struggle everyday, just like everyone else in this group. How can you say that most CMTers are not blessed? You're talking about thousands and thousands of people here. Being blessed is something only an individual can decide for himself . Everyone has blessings in their lives, I don't care how dismal things may seem sometimes. You asked that I might possibly give some advice. My advice is this: Count your blessings, focus and build on them, and the challenges that you deal with may not be as hard to overcome. As far as the severity of my illness goes, I was diagnosed at age 37 with peripheral neuropathy of unknown origin. I'll be 44 next month, and got my first diagnosis of CMT type II just 16 months ago. My lower leg muscles have atrophied and I can barely walk, so I walk with a cane. I am supposed to have AFO's, but have chosen (at least for now) not to have the prescription filled. I suffer with essential tremor of the hands, which medication keeps somewhat in control. I was prescribed Neurontin for severe muscle spasms, but have chosen to do a strength training and stretching program instead, which seems to be doing the trick. I live in Wisconsin and cannot tolerate the cold weather, because when I get cold I cannot move. I can barely hold a pen to sign my name. My hands are wasting away. I am not in a wheelchair yet, but that doesn't make my illness any less real or difficult to endure. I'm a fighter, and am just trying to slow the progression of my illness. The other CMTers in this group DO have my love and support. Also, I don't claim to have any real expertise in the area of CMT in general, just in my own, but I may be of some help to others in pursuing social security benefits, or denied insurance claims. I believe in fighting for what is rightfully mine, and I feel that way for other sufferers of CMT. Before I joined this group, I'd never even known anyone else that had this disease. But, I am trying to get the word out. When someone asks me why I walk with a cane (it amazes me how many people do), I tell them exactly what I have. I swear nobody has ever heard of the disease. It's pretty sad. I'm doing the best I can, and I refuse to be saddened to the point that I lose faith and stop focusing on the positive. ---- Original Message ----- From: Sue Horder-Mason <sue@...> < > Sent: Monday, January 14, 2002 6:49 PM Subject: Re: [] Why Me? > I agree totally with you and yes I thank God he only gave me CMT but for many of us it is a struggle to get both recognition and acceptance of CMT. But for many of us it's not quite so simple - we are stil fighting for recognition but with diagnosis and with the social security system regardless of which country we live in. that you have this disease. > And for some of us yes CMT will kill us but this is part of life's rich tapestry (I like cliches) > What many of us are trying to do is to fight to get a fair deal for everyone with CMT but more than that to get this disease recognised so more people can live decently instead of having to struggle and that goes for different countries they live in. > I appreciate that you're not happy living with CMT but neither or the rest of us. You only have to read the emails to see the struggle that others have to go through just so they can have a roof over their heads and some food on the table. > Yes I agree that you are blessed but many if not most CMTers are not blessed and they are the ones who keep on fighting. > Maybe you could help them by giving them advice? > You don't say how severe your CMT is but those in a wheelchair who are still trying to prove they have a progressive illness and need help and support would certainly benefit from your expertise. > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > ----- Original Message ----- > From: cindy kruser > > Sent: Tuesday, January 15, 2002 12:16 AM > Subject: [] Why Me? > > > In response to the dozens of e-mails I read on this topic, I never ask, " Why me? " . I thank God every day for not giving me an even worse burden to bear, like cancer or some other terrible disease. CMT creates a challenge for me, it's not going to kill me. God shut a door in my life when I was diagnosed with CMT, then he opened a window. I am now receiving long term disability benefits, and am home full time. This has enabled me to not only take better care of myself and my family, it has allowed me to " stop and smell the roses " , and appreciate the good things in my life. My 50 hour per week, 22 year career never gave me that luxury. Am I happy that I have this terrible illness? No way! But, I'm dealing with it, as we all are, and trying to make the best out of the situation. I think it's imperative that we focus on the good things in our lives. I am blessed, in spite of CMT. Sorry, I don't mean to be a martyr, this is just the way I feel. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 , Very well said!!!! You are a very strong willed person, I would even say one whom knows what she wants, and goes straight for it! I truly admire you and the way you handle your problems, As someone did say, there are " two sides " , and you seem to have the right side! God Bless! Love, Tina!:-) P.S. Keep the glass half full!:-) My wonderful Dad who raised me had a favorite motto which made a lasting impression in my brain, and in my life. He always said, " YOU CAN DO ANYTHING, IF YOU JUST PUT YOUR MIND TO IT! " ----- Original Message ----- From: cindy kruser Sent: Monday, January 14, 2002 10:52 PM Subject: Re: [] Why Me? Sue, Perhaps my " goodwill " message was not taken the way it was intended. First of all, there is nothing simple about my life. I struggle everyday, just like everyone else in this group. How can you say that most CMTers are not blessed? You're talking about thousands and thousands of people here. Being blessed is something only an individual can decide for himself . Everyone has blessings in their lives, I don't care how dismal things may seem sometimes. You asked that I might possibly give some advice. My advice is this: Count your blessings, focus and build on them, and the challenges that you deal with may not be as hard to overcome. As far as the severity of my illness goes, I was diagnosed at age 37 with peripheral neuropathy of unknown origin. I'll be 44 next month, and got my first diagnosis of CMT type II just 16 months ago. My lower leg muscles have atrophied and I can barely walk, so I walk with a cane. I am supposed to have AFO's, but have chosen (at least for now) not to have the prescription filled. I suffer with essential tremor of the hands, which medication keeps somewhat in control. I was prescribed Neurontin for severe muscle spasms, but have chosen to do a strength training and stretching program instead, which seems to be doing the trick. I live in Wisconsin and cannot tolerate the cold weather, because when I get cold I cannot move. I can barely hold a pen to sign my name. My hands are wasting away. I am not in a wheelchair yet, but that doesn't make my illness any less real or difficult to endure. I'm a fighter, and am just trying to slow the progression of my illness. The other CMTers in this group DO have my love and support. Also, I don't claim to have any real expertise in the area of CMT in general, just in my own, but I may be of some help to others in pursuing social security benefits, or denied insurance claims. I believe in fighting for what is rightfully mine, and I feel that way for other sufferers of CMT. Before I joined this group, I'd never even known anyone else that had this disease. But, I am trying to get the word out. When someone asks me why I walk with a cane (it amazes me how many people do), I tell them exactly what I have. I swear nobody has ever heard of the disease. It's pretty sad. I'm doing the best I can, and I refuse to be saddened to the point that I lose faith and stop focusing on the positive. ---- Original Message ----- From: Sue Horder-Mason <sue@...> < > Sent: Monday, January 14, 2002 6:49 PM Subject: Re: [] Why Me? > I agree totally with you and yes I thank God he only gave me CMT but for many of us it is a struggle to get both recognition and acceptance of CMT. But for many of us it's not quite so simple - we are stil fighting for recognition but with diagnosis and with the social security system regardless of which country we live in. that you have this disease. > And for some of us yes CMT will kill us but this is part of life's rich tapestry (I like cliches) > What many of us are trying to do is to fight to get a fair deal for everyone with CMT but more than that to get this disease recognised so more people can live decently instead of having to struggle and that goes for different countries they live in. > I appreciate that you're not happy living with CMT but neither or the rest of us. You only have to read the emails to see the struggle that others have to go through just so they can have a roof over their heads and some food on the table. > Yes I agree that you are blessed but many if not most CMTers are not blessed and they are the ones who keep on fighting. > Maybe you could help them by giving them advice? > You don't say how severe your CMT is but those in a wheelchair who are still trying to prove they have a progressive illness and need help and support would certainly benefit from your expertise. > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller > > ----- Original Message ----- > From: cindy kruser > > Sent: Tuesday, January 15, 2002 12:16 AM > Subject: [] Why Me? > > > In response to the dozens of e-mails I read on this topic, I never ask, " Why me? " . I thank God every day for not giving me an even worse burden to bear, like cancer or some other terrible disease. CMT creates a challenge for me, it's not going to kill me. God shut a door in my life when I was diagnosed with CMT, then he opened a window. I am now receiving long term disability benefits, and am home full time. This has enabled me to not only take better care of myself and my family, it has allowed me to " stop and smell the roses " , and appreciate the good things in my life. My 50 hour per week, 22 year career never gave me that luxury. Am I happy that I have this terrible illness? No way! But, I'm dealing with it, as we all are, and trying to make the best out of the situation. I think it's imperative that we focus on the good things in our lives. I am blessed, in spite of CMT. Sorry, I don't mean to be a martyr, this is just the way I feel. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Sue, I am ordering the book today. Just stopped by to make sure I had the site addy right. Susie PS. Sue, I wished I had pix to put on the net of my and my sister . We all 3 look very much alike. My hubby saw yours and wanted to know where I got 's pix. Life is funny aint it. Most of my family ancestors began in England, who knows we may not only share a disease but ancestors too. --- Sue Horder-Mason <sue@...> wrote: > I guess my question was WHY NOW?, after all these > years. Not neccesarily why me? I thought why MY > son?, > when apparently he was the only one out of my Dad's > 14 > grandchildren. And who knows it may be lurking > somewhere in any one of them as it was me. > > Susie - I know what you're saying. I have 2 sons who > show signs of CMT. I look at my sister and her kids > and see signs there. I hear about second cousins who > also show signs of 'problems or deformities' and I > think this thing is like a dreadful curse that is > spreading through my family and then there are > family I don't know about. > It goes on. > Why me? > Yes I'm the worst affected. > So why me? > Because although 'God' has taken so much from me he > left me my mouth (or gob) and a brain that reasons > and asks questions and a determination to change > things - even if that is only getting a diagnosis to > prevent future members of my family being > misdiagnosed and abused as I have. > But I hope that in some way that when my time on > earth is over - I will have made a difference not > only for my family but for everyone who has CMT. > Science and medicine is moving forward faster now > than ever before and although for us there isn't a > cure (but there is hope of making our lives easier) > there is hope of a eradicating this disease in the > future - and hell kid that's what I'm hanging in > for. I will always be in pain - I have all my life > so in a funny sort of way I'm used to it but > shouting about it, being part of support groups like > etc not only (I hope) helps people now but > also will help change the future. > I strongly believe in shouting, highlighting our > condition and talking to people about it, go for > your local newspapers - I have. Tell people about > CMT and tell how it affects your life and keep on > because if nothing else they'll listen just to shut > you up. > You really need to read Paolo's book 'Rehabilitation > Management of Charcot-Marie-Tooth Disease. I read it > and although I knew it didn't offer me any hope I > know it will help my boys. > Sometimes we have to look beyond us but use our > experience - our question 'why me?' and turn it into > something positive for those we love the most. > Love and hugs > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I > have found myself, my work, and my God. " - Helen > Keller > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 , You make a point for me. I was most afraid of cancer, which runs rampid in my family, Althimers and general dymensia. I am a dinga-ling anyway and don't need anything messing with my brain. What inteligence I do have I want to keep. Don't get me wrong, I am not retarded or slow, just an air head. My IQ is actually a little above normal, but my street-smarts leaves something to desire. In other words I can be an easy target for someone to sell me the Brooklyn Bridge sometimes. I sound mentaly challenged don't I? LOL --- cindy kruser <tigerboy@...> wrote: I thank God every day for not giving me an even worse burden to bear,like cancer or some other terrible disease. CMT creates a challenge for me, it's not going to kill me. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Hi Dave, You are not the only one to say why me! There have been many times when I've felt that way but then I say, why not me? You see, I'm thankful that no one in my family before me or since has CMT. For that I am eternaly grateful. Take care. Judy Quote Link to comment Share on other sites More sharing options...
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