Guest guest Posted July 30, 2007 Report Share Posted July 30, 2007 Hi Everyone: We are new to the group here, but definately not new to the whole Chiari thing. My mom & I joined on the same e-mail account. My name is Jenn, I'm 30, & live in Indiana. I have Chiari, EDS, Tethered Cord, & Retro-Flexed Odontoid. My mom, Debbie, has acted as my primary care giver since the first surgery in 2001. I just had my 10th surgery on June 21st, for the Tethered Cord. I've had 3 decompressions, 2 cranio-cervical fusions, a shunt placement, a shunt removal & 2 neuro-stimulators implanted. I've got a lot of scars these days. I'm headed out to NY August 5th for some post-op testing, an appointment with my pain management doctor & a follow-up with the surgeon. I'm there until Thursday, August 9th. If anyone will be there, maybe we can meet. Jenn - Indiana Chiari, EDS, Tethered Cord, Retroflexed Odontoid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Thank you Dianne. I could not stop crying today with regargs to this issue. Luckily I have a good friend at work that undertands my condition and I trust her. She offered to talk to my supervisor about my condition because I could not bring myself to do that. I will try to be prepare with information when is time to talk to my supervisor. I am not looking to move to another cubicle/area, but adapt to the situation. I have nothing against anyone, but I agree with some stories here that when you attempt to communicate this problem , for example to the co-worker that is popping gum practically all day, the person may take it the wrong way, even if it was not your intention to offend. What we are really trying to do is create awareness and consideration, but some people would not understand that. I am willing to challenge stigma, I think this is a valid condition for all of us, enough to be heard and understood and not be judged or blamed. I appreciate your thoughts. Thanks again and we are not alone in this. Take care, Waleska > > Waleska, > I am so sorry that your family is not sympathetic, I have found people believe me more when I show them the infomation about sound sensitivity. I think it is because it is a hidden condition that people find it hard to empathise and the condition is little known of course. > I hope you find the group helpful, I am a relatively new member too, and find people's understanding and support is comforting and there are many ideas to try. > Dianne > > New to the group > > > Hello, > > I am new to the group. I also thought I was the only one with this > problem. I consider myself sound sentitive as well. I think I have > had this problem most of my life, or since I can remember. However, > more recently is affecting me more. My family does not understand and > they make fun of me (although I do not currently live with them). > They think I need to get over it. I agree with them in seeking a > solution and treating the problem, but it makes me sad that the do not > understand (to have some consideration when making sounds that affect > me). Certain sounds are just painful. I do not get angry, but do get > very sad and cry often. Some os the sounds I consider painful, are > the sounds of someone chewing gum, specially at work when I try to > concentrate. I am currently using earplugs at work to avoid the > sounds and is effective, however I don't want anyone to judge me or > make fun of me for it, so I am trying to figure out ways to educate > people. > > I am in the process of visiting physicians to help me with this > problem. In the mean time I am glad I found this group. > > I believe that things will get better. Thank you for sharing. > > Waleska > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 , I am so sorry about this. This is a condition that for many of us, affects many areas in our life. I am trying to educate my family and have some patience, they still tell me to get over it. Don't really know if they will ever understand. Waleska Waleska, > I am so sorry that your family is not sympathetic, I have found people believe me more when I show them the infomation about sound sensitivity. I think it is because it is a hidden condition that people find it hard to empathise and the condition is little known of course. > I hope you find the group helpful, I am a relatively new member too, and find people's understanding and support is comforting and there are many ideas to try. > Dianne > > New to the group > > > Hello, > > I am new to the group. I also thought I was the only one with this > problem. I consider myself sound sentitive as well. I think I have > had this problem most of my life, or since I can remember. However, > more recently is affecting me more. My family does not understand and > they make fun of me (although I do not currently live with them). > They think I need to get over it. I agree with them in seeking a > solution and treating the problem, but it makes me sad that the do not > understand (to have some consideration when making sounds that affect > me). Certain sounds are just painful. I do not get angry, but do get > very sad and cry often. Some os the sounds I consider painful, are > the sounds of someone chewing gum, specially at work when I try to > concentrate. I am currently using earplugs at work to avoid the > sounds and is effective, however I don't want anyone to judge me or > make fun of me for it, so I am trying to figure out ways to educate > people. > > I am in the process of visiting physicians to help me with this > problem. In the mean time I am glad I found this group. > > I believe that things will get better. Thank you for sharing. > > Waleska > > > > > > > > > > --------------------------------- > Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Dianne/group, At work as for now they just look at me when I wear ear plugs and I somehow may have an idea what they may be thinking, but will not assume anything. Although I had one person recently (one of the gum popping people), sort of trying to ridicule, after she had made unnecessary noises and had apologized for them. Waleska Waleska, > I am so sorry that your family is not sympathetic, I have found people believe me more when I show them the infomation about sound sensitivity. I think it is because it is a hidden condition that people find it hard to empathise and the condition is little known of course. > I hope you find the group helpful, I am a relatively new member too, and find people's understanding and support is comforting and there are many ideas to try. > Dianne > > New to the group > > > Hello, > > I am new to the group. I also thought I was the only one with this > problem. I consider myself sound sentitive as well. I think I have > had this problem most of my life, or since I can remember. However, > more recently is affecting me more. My family does not understand and > they make fun of me (although I do not currently live with them). > They think I need to get over it. I agree with them in seeking a > solution and treating the problem, but it makes me sad that the do not > understand (to have some consideration when making sounds that affect > me). Certain sounds are just painful. I do not get angry, but do get > very sad and cry often. Some os the sounds I consider painful, are > the sounds of someone chewing gum, specially at work when I try to > concentrate. I am currently using earplugs at work to avoid the > sounds and is effective, however I don't want anyone to judge me or > make fun of me for it, so I am trying to figure out ways to educate > people. > > I am in the process of visiting physicians to help me with this > problem. In the mean time I am glad I found this group. > > I believe that things will get better. Thank you for sharing. > > Waleska > > > > > > > > > --------------------------------- > Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Thank you Dr. . It is very difficult to communicate this issue, for fear of many things. Hopefully it will become better known, it is definitelly our hope to make things better. Waleska > > This is sadly much more common than people might suspect. > > Invisible, uncommon, unseen, and unproven.........4S can pose major > problems in families and work places. > > However, it is real, we KNOW it is real, and we CAN diagnose it and > support that person who suffers. > > Dr. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Thank you Malvin. Today I think I had won a small battle. My mom heard about this problem on TV recently (but did not tell me until today) and did not showed understanding, but was interested in knoing what I am going through. Thank you for your thoughts. Waleska > > > > Hello, > > > > I am new to the group. I also thought I was the only one with this > > problem. I consider myself sound sentitive as well. I think I have > > had this problem most of my life, or since I can remember. However, > > more recently is affecting me more. My family does not understand and > > they make fun of me (although I do not currently live with them). > > They think I need to get over it. I agree with them in seeking a > > solution and treating the problem, but it makes me sad that the do not > > understand (to have some consideration when making sounds that affect > > me). Certain sounds are just painful. I do not get angry, but do get > > very sad and cry often. Some os the sounds I consider painful, are > > the sounds of someone chewing gum, specially at work when I try to > > concentrate. I am currently using earplugs at work to avoid the > > sounds and is effective, however I don't want anyone to judge me or > > make fun of me for it, so I am trying to figure out ways to educate > > people. > > > > I am in the process of visiting physicians to help me with this > > problem. In the mean time I am glad I found this group. > > > > I believe that things will get better. Thank you for sharing. > > > > Waleska > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Waleska and group, does anyone belong to a union? I ask because I have been doing some awareness raising for unions here so that they can represent the thoughts and feelings of employees to employers, so their training on this issue of 4s and other condidtions and impairments is crucial. Diannerodriguezwaleska wrote: Thank you Dianne. I could not stop crying today with regargs to this issue. Luckily I have a good friend at work that undertands my condition and I trust her. She offered to talk to my supervisor about my condition because I could not bring myself to do that. I will try to be prepare with information when is time to talk to my supervisor. I am not looking to move to another cubicle/area, but adapt to the situation. I have nothing against anyone, but I agree with some stories here that when you attempt to communicate this problem , for example to the co-worker that is popping gum practically all day, the person may take it the wrong way, even if it was not your intention to offend. What we are really trying to do is create awareness and consideration, but some people would not understand that. I am willing to challenge stigma, I think this is a valid condition for all of us, enough to be heard and understood and not be judged or blamed. I appreciate your thoughts. Thanks again and we are not alone in this.Take care,Waleska>> Waleska,> I am so sorry that your family is not sympathetic, I have found people believe me more when I show them the infomation about sound sensitivity. I think it is because it is a hidden condition that people find it hard to empathise and the condition is little known of course.> I hope you find the group helpful, I am a relatively new member too, and find people's understanding and support is comforting and there are many ideas to try.> Dianne> > New to the group> > > Hello,> > I am new to the group. I also thought I was the only one with this > problem. I consider myself sound sentitive as well. I think I have > had this problem most of my life, or since I can remember. However, > more recently is affecting me more. My family does not understand and > they make fun of me (although I do not currently live with them). > They think I need to get over it. I agree with them in seeking a > solution and treating the problem, but it makes me sad that the do not > understand (to have some consideration when making sounds that affect > me). Certain sounds are just painful. I do not get angry, but do get > very sad and cry often. Some os the sounds I consider painful, are > the sounds of someone chewing gum, specially at work when I try to > concentrate. I am currently using earplugs at work to avoid the > sounds and is effective, however I don't want anyone to judge me or > make fun of me for it, so I am trying to figure out ways to educate > people.> > I am in the process of visiting physicians to help me with this > problem. In the mean time I am glad I found this group. > > I believe that things will get better. Thank you for sharing.> > Waleska> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 what TV show did she see???? To: Soundsensitivity From: rodriguezwaleska@...Date: Thu, 18 Oct 2007 01:28:11 +0000Subject: Re: New to the group Thank you Malvin. Today I think I had won a small battle. My mom heard about this problem on TV recently (but did not tell me until today) and did not showed understanding, but was interested in knoing what I am going through. Thank you for your thoughts. Waleska > >> > Hello,> >> > I am new to the group. I also thought I was the only one with this> > problem. I consider myself sound sentitive as well. I think I have> > had this problem most of my life, or since I can remember. However,> > more recently is affecting me more. My family does not understand and> > they make fun of me (although I do not currently live with them).> > They think I need to get over it. I agree with them in seeking a> > solution and treating the problem, but it makes me sad that the do not> > understand (to have some consideration when making sounds that affect> > me). Certain sounds are just painful. I do not get angry, but do get> > very sad and cry often. Some os the sounds I consider painful, are> > the sounds of someone chewing gum, specially at work when I try to> > concentrate. I am currently using earplugs at work to avoid the> > sounds and is effective, however I don't want anyone to judge me or> > make fun of me for it, so I am trying to figure out ways to educate> > people.> >> > I am in the process of visiting physicians to help me with this> > problem. In the mean time I am glad I found this group.> >> > I believe that things will get better. Thank you for sharing.> >> > Waleska> >> > > >> Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 > > , > > I am so sorry about this. This is a condition that for many of us, > affects many areas in our life. I am trying to educate my family > and have some patience, they still tell me to get over it. > So sorry for you. Worst words ever: GET OVER IT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 My family told me to " get over it. " My response was " Please don't EVER tell me to " get over it " again. It is so dismissive. Lacking compassion. Thoughtless. Mean. A comment like that doesn't leave room for a reply, let alone continuance of the conversation. " > > > > , > > > > I am so sorry about this. This is a condition that for many of us, > > affects many areas in our life. I am trying to educate my family > > and have some patience, they still tell me to get over it. > > > > > So sorry for you. Worst words ever: > GET OVER IT > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2007 Report Share Posted October 22, 2007 It was one of the daily talk shows on a local TV channel around noon. It's a local channel in Puerto Rico. I was happy to hear that this topic is being discussed. > >> > Hello,> >> > I am new to the group. I also thought I was the only one with this> > problem. I consider myself sound sentitive as well. I think I have> > had this problem most of my life, or since I can remember. However,> > more recently is affecting me more. My family does not understand and> > they make fun of me (although I do not currently live with them).> > They think I need to get over it. I agree with them in seeking a> > solution and treating the problem, but it makes me sad that the do not> > understand (to have some consideration when making sounds that affect> > me). Certain sounds are just painful. I do not get angry, but do get> > very sad and cry often. Some os the sounds I consider painful, are> > the sounds of someone chewing gum, specially at work when I try to> > concentrate. I am currently using earplugs at work to avoid the> > sounds and is effective, however I don't want anyone to judge me or> > make fun of me for it, so I am trying to figure out ways to educate> > people.> >> > I am in the process of visiting physicians to help me with this> > problem. In the mean time I am glad I found this group.> >> > I believe that things will get better. Thank you for sharing.> >> > Waleska> >> > > >> > > > > > > > _________________________________________________________________ > Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! > http://onecare.live.com/standard/en-us/purchase/trial.aspx? s_cid=wl_hotmailnews > Quote Link to comment Share on other sites More sharing options...
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