Re: Disability??? Your own office???

[Guest guest]

We all have our own ways of dealing with this. You are lucky that Xanax seems to mellow you down and you

are able to work with that. For others it is not so easy as you can see by their posts and the pain that it causes

them to be around the triggers. Personally, Xanax makes me go to sleep, even a very small dose.

You are young. I have found my 4S did not bother me at work until the last 10 years. I am 42. I can

barely stand to be around other people at this point and I think my 4S is not as bad as some of the

unfortunate ones to have it worse.

Enjoy being able to deal with things while you can. Don't make light of the others that need a room with

a door.

It is not easy being this way.

Vicki

Disability??? Your own office???

Wow, I am totally shocked by some of your posts. I am 26 years old and have been living with this condition since I was about 7 or 8. If I hear certain noises such as gum chewing, crunching food, the sounds of plastic bags being opened, deep breathing, typing on a keyboard, whispers, heat/air condition vents, dishwashers, water running in a fishtank, etc. I immediately go into a panic and my heart starts racing and I want to scream at the person making the sound. I've lost relationships because of this, but luckily my family understands to some extent.I would NEVER go to my boss and ask for an office. Are you trying to piss everyone off in the office? Everyone hates cubicles, no questions asked, but to think you need an office to yourself is over the top. You are lucky in today's economy to even have a job. You can try other things like listening to music through headphones or my doctor prescribes Xanax to me, which I take whenever I have an attack. Within about 15 minutes I have everything under control and can go back to my normal life.I read books non-stop and websites trying to figure out everything I can do to help me with my condition and pray that someday there will be a cure, but for now I live as much of a normal life as I possibly can.Asking for disability is the easy way out and completely ridiculous. Good luck with that. Another american capable of doing work but instead sitting on the couch making me pay for their living expenses. Thank you so much.

[Guest guest]

I don't even know where to begin...

 

Wow, I am totally shocked by some of your posts. I am 26 years old and have been living with this condition since I was about 7 or 8. If I hear certain noises such as gum chewing, crunching food, the sounds of plastic bags being opened, deep breathing, typing on a keyboard, whispers, heat/air condition vents, dishwashers, water running in a fishtank, etc. I immediately go into a panic and my heart starts racing and I want to scream at the person making the sound. I've lost relationships because of this, but luckily my family understands to some extent.

I would NEVER go to my boss and ask for an office. Are you trying to piss everyone off in the office? Everyone hates cubicles, no questions asked, but to think you need an office to yourself is over the top. You are lucky in today's economy to even have a job. You can try other things like listening to music through headphones or my doctor prescribes Xanax to me, which I take whenever I have an attack. Within about 15 minutes I have everything under control and can go back to my normal life.

I read books non-stop and websites trying to figure out everything I can do to help me with my condition and pray that someday there will be a cure, but for now I live as much of a normal life as I possibly can.

Asking for disability is the easy way out and completely ridiculous. Good luck with that. Another american capable of doing work but instead sitting on the couch making me pay for their living expenses. Thank you so much.

[Guest guest]

Asking for disability is the easy way out and completely ridiculous. Good luck with that. Another american capable of doing work but instead sitting on the couch making me pay for their living expenses. Thank you so much.

Crystal--- From what I read, I didn't get that Curtis was asking to live on disablility. People who are on disability have been thru a very long process of proving they are unable to work. Should you ever god forbid need disability, I hope it will still be there for you too. Now turn the music off and try and reread the thread, it might make more sense without all the distraction, I doubt software engineers work with music on. Oh and I used to take xanax, it stopped working after so many years...

[Guest guest]

,

Your response has really opened up my eyes. I have a very hard time expressing

my words not only in person but in writing as well. I should have read some of

their posts and just left it alone. I did not want to hurt anyone and I

sincerely apologize that my post came across so rudely. I do read almost every

post that is from this group and have learned a lot from being a member and

would like to continue learning more. My mouth is shut from now on.

Again I apologize not only you, but to the group as well,

Crystal

> > >

> > > Wow, I am totally shocked by some of your posts. I am 26 years old and

have been living with this condition since I was about 7 or 8. If I hear certain

noises such as gum chewing, crunching food, the sounds of plastic bags being

opened, deep breathing, typing on a keyboard, whispers, heat/air condition

vents, dishwashers, water running in a fishtank, etc. I immediately go into a

panic and my heart starts racing and I want to scream at the person making the

sound. I've lost relationships because of this, but luckily my family

understands to some extent.

> > >

> > > I would NEVER go to my boss and ask for an office. Are you trying to piss

everyone off in the office? Everyone hates cubicles, no questions asked, but to

think you need an office to yourself is over the top. You are lucky in today's

economy to even have a job. You can try other things like listening to music

through headphones or my doctor prescribes Xanax to me, which I take whenever I

have an attack. Within about 15 minutes I have everything under control and can

go back to my normal life.

> > >

> > > I read books non-stop and websites trying to figure out everything I can

do to help me with my condition and pray that someday there will be a cure, but

for now I live as much of a normal life as I possibly can.

> > >

> > > Asking for disability is the easy way out and completely ridiculous. Good

luck with that. Another american capable of doing work but instead sitting on

the couch making me pay for their living expenses. Thank you so much.

> > >

> >

>

[Guest guest]

Crystal,

No, I don't think we should push for 'special accommodations' for shopping, or

airplanes, or movies. But yes, it probably would not cost most EMPLOYERS or

SCHOOLS anything to accommodate most of us. I am 51, and have developed some

balls the last few years, in that instead of feeling angry and put-down, I speak

up for myself. I'm not great at it, but getting better all the time. I did ask

my employer (a major U.S. Fortune 500 company) to talk to a woman nearby about

her gum-cracking. I asked the same employer to remove some light bulbs from the

fixture above me because it was too bright. They complied with both requests.

You know what my manager recently told me? She has had to tell some employees

that their heavy perfume was annoying others around them. She has learned that

others were getting headaches because the overhead bulbs were too bright, but

they didn't speak up. So speaking up is a good thing! They can't fire you for

asking. -Hope

>

> Wow, I am totally shocked by some of your posts. I am 26 years old and have

been living with this condition since I was about 7 or 8. If I hear certain

noises such as gum chewing, crunching food, the sounds of plastic bags being

opened, deep breathing, typing on a keyboard, whispers, heat/air condition

vents, dishwashers, water running in a fishtank, etc. I immediately go into a

panic and my heart starts racing and I want to scream at the person making the

sound. I've lost relationships because of this, but luckily my family

understands to some extent.

>

> I would NEVER go to my boss and ask for an office. Are you trying to piss

everyone off in the office? Everyone hates cubicles, no questions asked, but to

think you need an office to yourself is over the top. You are lucky in today's

economy to even have a job. You can try other things like listening to music

through headphones or my doctor prescribes Xanax to me, which I take whenever I

have an attack. Within about 15 minutes I have everything under control and can

go back to my normal life.

>

> I read books non-stop and websites trying to figure out everything I can do to

help me with my condition and pray that someday there will be a cure, but for

now I live as much of a normal life as I possibly can.

>

> Asking for disability is the easy way out and completely ridiculous. Good luck

with that. Another american capable of doing work but instead sitting on the

couch making me pay for their living expenses. Thank you so much.

>

[Guest guest]

Crystal,We all have said or done something that we regret later, we are only human after all. But its what we do after realising our mistakes that are important and your statement below shows a good example of positive actions and understanding. Learn from this and embrace it, your points and opinion are valid and I believe keeping your mouth shut would be a mistake . Every bodies continual input here moves us forward as a group, even disputes like this, so please don't feel you have to keep quite, just... Re word a little and in turn everyone here I'm sure will try not to jump the gun.Sent from my BlackBerry® smartphone on 3Date: Fri, 16 Oct 2009 15:26:24 -0000To: <Soundsensitivity >Subject: Re: Disability??? Your own office??? ,Your response has really opened up my eyes. I have a very hard time expressing my words not only in person but in writing as well. I should have read some of their posts and just left it alone. I did not want to hurt anyone and I sincerely apologize that my post came across so rudely. I do read almost every post that is from this group and have learned a lot from being a member and would like to continue learning more. My mouth is shut from now on.Again I apologize not only you, but to the group as well,Crystal> > >> > > Wow, I am totally shocked by some of your posts. I am 26 years old and have been living with this condition since I was about 7 or 8. If I hear certain noises such as gum chewing, crunching food, the sounds of plastic bags being opened, deep breathing, typing on a keyboard, whispers, heat/air condition vents, dishwashers, water running in a fishtank, etc. I immediately go into a panic and my heart starts racing and I want to scream at the person making the sound. I've lost relationships because of this, but luckily my family understands to some extent.> > > > > > I would NEVER go to my boss and ask for an office. Are you trying to piss everyone off in the office? Everyone hates cubicles, no questions asked, but to think you need an office to yourself is over the top. You are lucky in today's economy to even have a job. You can try other things like listening to music through headphones or my doctor prescribes Xanax to me, which I take whenever I have an attack. Within about 15 minutes I have everything under control and can go back to my normal life.> > > > > > I read books non-stop and websites trying to figure out everything I can do to help me with my condition and pray that someday there will be a cure, but for now I live as much of a normal life as I possibly can.> > > > > > Asking for disability is the easy way out and completely ridiculous. Good luck with that. Another american capable of doing work but instead sitting on the couch making me pay for their living expenses. Thank you so much.> > >> >>

[Guest guest]

Hi all,

So far, I've stayed out of this discussion, not because I don't have a point of view but because I do not like the way this group is responding to a legitimate point of view. Simply because Crystal is voicing an opinion that works for her, but not the majority of this group, does not give other people the right to condemn her.

We all have our limitations when it comes to writing and expressing ourselves - this is an issue with email communication, it lacks emotion and intent is easily misconstrued.

I do agree that disability pensions should not be easily obtained, and that this condition requires medical diagnosis and defined parameters before any such financial support is considered. At this point, and this is merely my opinion, I don't quite understand why 4S would preclude a person from earning an income. I live with it, and quite a few other chronic illnesses one of which is very debilitating and now requires constant pain mangement, and I am able to work and study. That's just me and my perspective. The work I choose to do is fairly solitary, autonomous, and accommodates my aversion to other people's sounds. I didn't deliberately set out to choose this career path because of 4S, yet once I joined in this group and realised what was wrong with me, the benefit of hindsight afforded me the opportunity to see that I have in fact chosen work that perfectly accommodates my 4S requirements.

Some time ago I quite strongly opposed another person in this group who seemed to view his daughter's 4S as a type of scientific experiment for him to play with. I objected to his calculated parenting style and his perceived lack of sensitivity to our condition. He had no personal experience with 4S and therefore could not contribute subjectively. Rightly or wrongly, I spoke my mind and I feel justified in doing so. However, Crystal is speaking from her own personal experience with htis condition, and she can fully relate to the frustrations and daily stress that 4S inflicts, and this is where we as a group, no matter how differing our opinions, must accept and encourage open discussion without instilling a fear mentality. Whether her style of coping with 4S is unanimously accepted, or rejected, is irrelevant - her methodology works for her. Chances are there is someone in the world who shares her views. Given the

small odds of any of us even finding this group, I'd say there are thousands who could sympathise with Crystal's perspective.

Kids, don't read this last sentence -- basically this is a sh** condition that we all have put up with for years. It sucks. I hate it. I have nightmare after nightmare of my father's eating, and there are days where I feel like sticking sharpened pencils into my ears and permanently ridding myself of this pain forever. I am over it. This group is the one place where I, and all of you, feel comfortable enough to speak our minds and share, vent, support. Let's keep it that way.

Adrienne

To: Soundsensitivity Sent: Sat, 17 October, 2009 2:26:24 AMSubject: Re: Disability??? Your own office???

,Your response has really opened up my eyes. I have a very hard time expressing my words not only in person but in writing as well. I should have read some of their posts and just left it alone. I did not want to hurt anyone and I sincerely apologize that my post came across so rudely. I do read almost every post that is from this group and have learned a lot from being a member and would like to continue learning more. My mouth is shut from now on.Again I apologize not only you, but to the group as well,Crystal> > >> > > Wow, I am totally shocked by some of your posts. I am 26 years old and have been living with this condition since I was about 7 or 8. If I hear certain noises such as gum chewing, crunching food, the sounds of plastic bags being opened, deep breathing, typing on a keyboard, whispers, heat/air condition vents, dishwashers, water running in a fishtank, etc. I immediately go into a panic and my heart starts racing and I want to scream at the person making the sound. I've lost relationships because of this, but luckily my family understands to some extent.> > > > > > I would NEVER go to my boss and ask for an office. Are you trying to piss everyone off in the office? Everyone hates cubicles, no questions asked, but to think you need an

office to yourself is over the top. You are lucky in today's economy to even have a job. You can try other things like listening to music through headphones or my doctor prescribes Xanax to me, which I take whenever I have an attack. Within about 15 minutes I have everything under control and can go back to my normal life.> > > > > > I read books non-stop and websites trying to figure out everything I can do to help me with my condition and pray that someday there will be a cure, but for now I live as much of a normal life as I possibly can.> > > > > > Asking for disability is the easy way out and completely ridiculous. Good luck with that. Another american capable of doing work but instead sitting on the couch making me pay for their living expenses. Thank you so much.> > >> >>

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[Guest guest]

Crystal,

Do you think people in wheelchairs should be accomodated by requiring doorways, for example in public buildings, to be wide enough for most wheelchairs to fit through?

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of CrystalSent: Friday, October 16, 2009 5:54 AMTo: Soundsensitivity Subject: Re: Disability??? Your own office???

Okay, I have read each one of your replies and this is what I have to say:(1) I was NOT referring to ANYONE in particular when I wrote my comment. I had no names in mind and was only expressing my thoughts and opinions. Don't like it...don't read it.(2) So what if I am only 26 years old. I have been dealing with this condition for almost 20 years now and it affects every aspect of my life. I can't go to many places that I would like to go for instance, the mall, the movies, and/or out to meals with friends or family. Heck, sometimes I can't even be in my own home without throwing a fit if my significant other is on the computer, clicking the mouse and typing on the keyboard.(3) For the person who said Xanax will only work for me for a short time because the effect of it goes away. I have been on the same dosage for 10 years now. Speak for yourself. There are some of you out there that it might work for, so don't go ruining it for them by jumping the gun and saying it doesn't work. Some should talk to their doctors about it and see if it can help them.(4) For the person that is pissed off that I did not capitalize American…..holy cow, please accept my deepest apologies….god for bid a human makes a spelling error. Bet you never had that happen to you.(5) And for the individual who said my condition is "mild", I pretty much want to tell you to go to hell, because you have no idea how much this affects my life. It's trying to take over my life and I am fighting back everyday. I read and I read and I read. I will make a normal life for myself without asking others to accomodate me. Do some of you think you should get special accomodations where ever you go? Airplanes? Movies? Shopping? We have to be responsible for ourselves and make the best out of life that we can.I am so glad that all of you know me well enough to make all of these assumptions of me. What you all wrote was 100% directed towards me and so be it. What I wrote was not directed at ANYONE and therefore I was not trying to hurt anyone, but instead expressing my frustration on the topics. I assumed that was something we were allowed to do here. Guess not. >> Wow, I am totally shocked by some of your posts. I am 26 years old and have been living with this condition since I was about 7 or 8. If I hear certain noises such as gum chewing, crunching food, the sounds of plastic bags being opened, deep breathing, typing on a keyboard, whispers, heat/air condition vents, dishwashers, water running in a fishtank, etc. I immediately go into a panic and my heart starts racing and I want to scream at the person making the sound. I've lost relationships because of this, but luckily my family understands to some extent.> > I would NEVER go to my boss and ask for an office. Are you trying to piss everyone off in the office? Everyone hates cubicles, no questions asked, but to think you need an office to yourself is over the top. You are lucky in today's economy to even have a job. You can try other things like listening to music through headphones or my doctor prescribes Xanax to me, which I take whenever I have an attack. Within about 15 minutes I have everything under control and can go back to my normal life.> > I read books non-stop and websites trying to figure out everything I can do to help me with my condition and pray that someday there will be a cure, but for now I live as much of a normal life as I possibly can.> > Asking for disability is the easy way out and completely ridiculous. Good luck with that. Another american capable of doing work but instead sitting on the couch making me pay for their living expenses. Thank you so much.>