Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 keenstop wrote:Pam,<<.....Thank you so much for your insight. That sounds like what they want to do with Becca. It seems so strange that it wouldn't have an effect on it......Thanks for giving me hope that Becca can have a happy life. How many children do you have? Becca always asks me how she will be able to take care of kids some day, that they might make sounds that she can't deal with......>> Hi Kathy, Yes indeed, Becca can have a happy, and productive life. I have come to regard this as a disability. Once I stopped fighting so hard to "overcome it" and once I finally accepted it, life became a bit easier and more enjoyable..... I believe that the neurofeedback had no effect on my SSSS because my body's immediate reaction to the offending noises is involuntary and not something that I stand any chance of being able to consciously or even semi-consciously control..... I have two kids -- teenagers, at that! And my SSSS has always been right there with us. Meals have been difficult at times, but they do understand if I am having a bad day and cannot eat with them......sometimes there are strings of bad days......but they eat together and and accept me, and this, as being a part of MY problem and not theirs. Although there is no gum chewing in my household, I have never made this THEIR problem or their fault. I have openly and honestly shared with them about the SSSS -- they know and believe that it exists and they wonder about it's origin. They remain protective of me when it comes to this.....and, they usually tell their friends in advance of certain noises (mainly gum chewing) and ask these friends to be respectful of that. I have remarried. My first marriage was not good.....and a mistake. I knew it on the day it happend, but went through with it anyway.......My second (current) husband also does not understand -- but he has seen its effect and accepts me as I am. He, too, realizes that this is MY problem....but we have a code whereby when situations come up I usually state, "I don't know how long I'm going to last here (in this situation)". He usually recognizes that "catch phrase" and simply says, "Understood" and we leave. We have left many different functions as a result, but he seems to bear no resentment. It is a part of "being with me" and "loving me as I am". In return, I must accept the people in my life -- with all of their flaws as well, and love them just the same. How could I not, under such loving and humbling circumstances? My SSSS seems to me like the biggest flaw amongst all of us in my family.....but in their eyes, it's truly just another character quirk to be accepted. I had to learn that lesson.....I had to learn that we all have our individual quirks and flaws.....and I had to accept my own quirks -- especially the SSSS. My spiritual beliefs teach me to accept and learn from those things that I do not understand.....to embrace them for what they are -- nothing more, and certainly nothing less, and to love them. Certainly, my SSSS falls into this category.....this has been a hard lesson for me to wrap my mind around, but I'm starting to get it. If others can accept me and love me -- my two teenage girls (who love gum, by the way) and my new husband, then I can accept me and love myself as well. Perhaps the best thing that you can do for Becca is to help her accept this condition in the same way you would help her to accept any other physical disability.....and to help her learn to make accomadations accordingly. For example: say there is a birthday party that she has been looking forward to. After being there for only five minutes, however, the offensive sounds begin.....teach her to politely leave without resentment, because in doing so she will be taking care of herself and doing what is best for HER. Teach her to put this thing into perspective in that she must always attempt to remain in her comfort zone without guilt or shame until a cure can be found.....the rest will come to pass as a result -- she WILL have an accepting family and friends. She WILL not ALWAYS have to leave functions....and yes, it WILL be frustrating as hell sometimes.....but very worth it. She WILL be able to be there for others who suffer -- from this, and from other afflictions as well..... ........a friend of mine referred to it as us being "angels with swords" -- Those of us who have come to a better understanding of what it truly means to suffer and be afflicted, and who now have the strength to offer support and love to others by speaking up about things like this, talking openly and honestly about it.....and living life on life's terms. Life can be rewarding and full even with the most baffling of afflictions...... I remain hopeful.....although at times that dwindles during frustration.....and then, I come home to those that love me and that hope returns. Becca can -- and will, find the same if she accepts the hand she's dealt with, sets healthy boundaries of what it's okay to do and not okay to do around her, and learns to live life on life's terms without guilt or shame. The right people will come into her life.....and when it comes to her own children -- simply tell her that her children will accept her and love her unconditionally just as she as accepted and loved you unconditionally. Again.....I am here. This condition has finally been recognized, accepted and is finally being studied......and for that, I am grateful. For such a long time, there was nothing..... Please continue to write if you like. I live in Philadelphia, PA.....I'm not sure where that is in relation to you and it does not matter. Just knowing that you are out there is good enough.....Becca will be in my prayers. Take good care! In peace and light, as always...... -- Pam New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Thanks so much Pam. You give me hope. Thank you for saving me from wasting my time with neurofeedback. Also for giving me a glimpse of what Becca could have. We live in Northern Virginia, not too far from you. Thanks so much. Kathy -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Pamela MSent: Thursday, April 13, 2006 9:33 PMTo: Soundsensitivity Subject: Re: Re: Neurofeedback keenstop wrote:Pam,<<.....Thank you so much for your insight. That sounds like what they want to do with Becca. It seems so strange that it wouldn't have an effect on it......Thanks for giving me hope that Becca can have a happy life. How many children do you have? Becca always asks me how she will be able to take care of kids some day, that they might make sounds that she can't deal with......>> Hi Kathy, Yes indeed, Becca can have a happy, and productive life. I have come to regard this as a disability. Once I stopped fighting so hard to "overcome it" and once I finally accepted it, life became a bit easier and more enjoyable..... I believe that the neurofeedback had no effect on my SSSS because my body's immediate reaction to the offending noises is involuntary and not something that I stand any chance of being able to consciously or even semi-consciously control..... I have two kids -- teenagers, at that! And my SSSS has always been right there with us. Meals have been difficult at times, but they do understand if I am having a bad day and cannot eat with them......sometimes there are strings of bad days......but they eat together and and accept me, and this, as being a part of MY problem and not theirs. Although there is no gum chewing in my household, I have never made this THEIR problem or their fault. I have openly and honestly shared with them about the SSSS -- they know and believe that it exists and they wonder about it's origin. They remain protective of me when it comes to this.....and, they usually tell their friends in advance of certain noises (mainly gum chewing) and ask these friends to be respectful of that. I have remarried. My first marriage was not good.....and a mistake. I knew it on the day it happend, but went through with it anyway.......My second (current) husband also does not understand -- but he has seen its effect and accepts me as I am. He, too, realizes that this is MY problem....but we have a code whereby when situations come up I usually state, "I don't know how long I'm going to last here (in this situation)". He usually recognizes that "catch phrase" and simply says, "Understood" and we leave. We have left many different functions as a result, but he seems to bear no resentment. It is a part of "being with me" and "loving me as I am". In return, I must accept the people in my life -- with all of their flaws as well, and love them just the same. How could I not, under such loving and humbling circumstances? My SSSS seems to me like the biggest flaw amongst all of us in my family.....but in their eyes, it's truly just another character quirk to be accepted. I had to learn that lesson.....I had to learn that we all have our individual quirks and flaws.....and I had to accept my own quirks -- especially the SSSS. My spiritual beliefs teach me to accept and learn from those things that I do not understand.....to embrace them for what they are -- nothing more, and certainly nothing less, and to love them. Certainly, my SSSS falls into this category.....this has been a hard lesson for me to wrap my mind around, but I'm starting to get it. If others can accept me and love me -- my two teenage girls (who love gum, by the way) and my new husband, then I can accept me and love myself as well. Perhaps the best thing that you can do for Becca is to help her accept this condition in the same way you would help her to accept any other physical disability.....and to help her learn to make accomadations accordingly. For example: say there is a birthday party that she has been looking forward to. After being there for only five minutes, however, the offensive sounds begin.....teach her to politely leave without resentment, because in doing so she will be taking care of herself and doing what is best for HER. Teach her to put this thing into perspective in that she must always attempt to remain in her comfort zone without guilt or shame until a cure can be found.....the rest will come to pass as a result -- she WILL have an accepting family and friends. She WILL not ALWAYS have to leave functions....and yes, it WILL be frustrating as hell sometimes.....but very worth it. She WILL be able to be there for others who suffer -- from this, and from other afflictions as well..... .........a friend of mine referred to it as us being "angels with swords" -- Those of us who have come to a better understanding of what it truly means to suffer and be afflicted, and who now have the strength to offer support and love to others by speaking up about things like this, talking openly and honestly about it.....and living life on life's terms. Life can be rewarding and full even with the most baffling of afflictions...... I remain hopeful.....although at times that dwindles during frustration.....and then, I come home to those that love me and that hope returns. Becca can -- and will, find the same if she accepts the hand she's dealt with, sets healthy boundaries of what it's okay to do and not okay to do around her, and learns to live life on life's terms without guilt or shame. The right people will come into her life.....and when it comes to her own children -- simply tell her that her children will accept her and love her unconditionally just as she as accepted and loved you unconditionally. Again.....I am here. This condition has finally been recognized, accepted and is finally being studied......and for that, I am grateful. For such a long time, there was nothing..... Please continue to write if you like. I live in Philadelphia, PA.....I'm not sure where that is in relation to you and it does not matter. Just knowing that you are out there is good enough.....Becca will be in my prayers. Take good care! In peace and light, as always...... -- Pam New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Pam, Also, my husband wanted to know how many sessions you had for biofeedback with your SSSS. Thanks again for the information. Kathy -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Pamela MSent: Thursday, April 13, 2006 9:33 PMTo: Soundsensitivity Subject: Re: Re: Neurofeedback keenstop wrote:Pam,<<.....Thank you so much for your insight. That sounds like what they want to do with Becca. It seems so strange that it wouldn't have an effect on it......Thanks for giving me hope that Becca can have a happy life. How many children do you have? Becca always asks me how she will be able to take care of kids some day, that they might make sounds that she can't deal with......>> Hi Kathy, Yes indeed, Becca can have a happy, and productive life. I have come to regard this as a disability. Once I stopped fighting so hard to "overcome it" and once I finally accepted it, life became a bit easier and more enjoyable..... I believe that the neurofeedback had no effect on my SSSS because my body's immediate reaction to the offending noises is involuntary and not something that I stand any chance of being able to consciously or even semi-consciously control..... I have two kids -- teenagers, at that! And my SSSS has always been right there with us. Meals have been difficult at times, but they do understand if I am having a bad day and cannot eat with them......sometimes there are strings of bad days......but they eat together and and accept me, and this, as being a part of MY problem and not theirs. Although there is no gum chewing in my household, I have never made this THEIR problem or their fault. I have openly and honestly shared with them about the SSSS -- they know and believe that it exists and they wonder about it's origin. They remain protective of me when it comes to this.....and, they usually tell their friends in advance of certain noises (mainly gum chewing) and ask these friends to be respectful of that. I have remarried. My first marriage was not good.....and a mistake. I knew it on the day it happend, but went through with it anyway.......My second (current) husband also does not understand -- but he has seen its effect and accepts me as I am. He, too, realizes that this is MY problem....but we have a code whereby when situations come up I usually state, "I don't know how long I'm going to last here (in this situation)". He usually recognizes that "catch phrase" and simply says, "Understood" and we leave. We have left many different functions as a result, but he seems to bear no resentment. It is a part of "being with me" and "loving me as I am". In return, I must accept the people in my life -- with all of their flaws as well, and love them just the same. How could I not, under such loving and humbling circumstances? My SSSS seems to me like the biggest flaw amongst all of us in my family.....but in their eyes, it's truly just another character quirk to be accepted. I had to learn that lesson.....I had to learn that we all have our individual quirks and flaws.....and I had to accept my own quirks -- especially the SSSS. My spiritual beliefs teach me to accept and learn from those things that I do not understand.....to embrace them for what they are -- nothing more, and certainly nothing less, and to love them. Certainly, my SSSS falls into this category.....this has been a hard lesson for me to wrap my mind around, but I'm starting to get it. If others can accept me and love me -- my two teenage girls (who love gum, by the way) and my new husband, then I can accept me and love myself as well. Perhaps the best thing that you can do for Becca is to help her accept this condition in the same way you would help her to accept any other physical disability.....and to help her learn to make accomadations accordingly. For example: say there is a birthday party that she has been looking forward to. After being there for only five minutes, however, the offensive sounds begin.....teach her to politely leave without resentment, because in doing so she will be taking care of herself and doing what is best for HER. Teach her to put this thing into perspective in that she must always attempt to remain in her comfort zone without guilt or shame until a cure can be found.....the rest will come to pass as a result -- she WILL have an accepting family and friends. She WILL not ALWAYS have to leave functions....and yes, it WILL be frustrating as hell sometimes.....but very worth it. She WILL be able to be there for others who suffer -- from this, and from other afflictions as well..... .........a friend of mine referred to it as us being "angels with swords" -- Those of us who have come to a better understanding of what it truly means to suffer and be afflicted, and who now have the strength to offer support and love to others by speaking up about things like this, talking openly and honestly about it.....and living life on life's terms. Life can be rewarding and full even with the most baffling of afflictions...... I remain hopeful.....although at times that dwindles during frustration.....and then, I come home to those that love me and that hope returns. Becca can -- and will, find the same if she accepts the hand she's dealt with, sets healthy boundaries of what it's okay to do and not okay to do around her, and learns to live life on life's terms without guilt or shame. The right people will come into her life.....and when it comes to her own children -- simply tell her that her children will accept her and love her unconditionally just as she as accepted and loved you unconditionally. Again.....I am here. This condition has finally been recognized, accepted and is finally being studied......and for that, I am grateful. For such a long time, there was nothing..... Please continue to write if you like. I live in Philadelphia, PA.....I'm not sure where that is in relation to you and it does not matter. Just knowing that you are out there is good enough.....Becca will be in my prayers. Take good care! In peace and light, as always...... -- Pam New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Kathy Howe wrote: <<.....Also, my husband wanted to know how many sessions you had for biofeedback with your SSSS. Thanks again for the information......>> Hi Kathy, To be honest with you I cannot remember how many sessions I had. I was in college at the time during the late 70's -- Miami University of Oxford, Ohio. Since I was a student there, I was able to get these sessions for nearly free through what we referred to as university health. I'm certain that I went to these sessions from late January through early May -- more often in the beginning than toward the end because I WAS picking up what they were attempting to accomplish with the biofeedback.....it just didn't work -- and hasn't with the SSSS for me. It was, however, extremely effective in working with pain.....and still is. Please don't base your decisions on my experience, however. What did not work for me just might work for Becca......or, she may derive the benefits of one therapy and use them to her advantage for something else, as I did with biofeedback and pain management. This is a peculiar affliction, and everyone is different....just like some cancer patients respond well to treatment while others do not respond at all to the same treatment. What has worked for me is acceptance of my predicament, embracing it as a part of who I am, and making the necessary accomadations as a result......kind of "knowing what I can't change and changing what I can......" In other words, while I can't change the fact that I have SSSS or the way it seems to affect me......I CAN change whether or not I am exposed to offending sounds for prolonged periods of time, I CAN change whether or not to have people in my life who accept me WITH it, and I CAN change and adjust my attitudes (one of the many attitudes that I had to change was my refusal to take any more drugs -- with the help of my doctor, I have found that lorazepam does take the edge off when all else fails....) I will stay in touch.....please keep me posted as to how Becca is doing.....) -- Pam How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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