RE: 'THIS' has to get some attention soon

[Guest guest]

That's just it. I don't think people realize the deep rooted effects of this. I

have often stopped possible relationships because I'm so worried. Not just about

myself but I also think about how 4s might make the other persons life

completely miserable which in turn makes my life miserable through fear of

actually getting close to somebody.

I'm sorry to hear about your breakup.

>

> I'm so sorry how badly you suffer with this. I'm sorry that you are losing

> relationships and not getting to live a " normal " life. I will keep you in

> my prayers that you can find peace. And you are right--someone needs to

> figure this out! WE NEED RESEARCH!!

>

>

> 'THIS' has to get some attention soon

>

>

>

> today is sat., march 27th, i just read all the posts about how we are

> 'not' being recognized, my sound sensitivies have gotten so bad that i

> actually thought of having my psychiatrist put me in the hospital because i

> was constantly raging over sounds where i live and saying 'i'd rather live

> in a padded cell'........... but then i thought, what will they do for me in

> the hospital???? i have 'tried' to stay hopeful because i have an

> opportunity to see an audiologist but down deep, i don't think that is the

> answer so have put that on hold, no offense to him, it's just that i've

> learned from all of us here that it's probably just 'masking' and nothing

> that would really help. i believe in god so the 'only' way i am getting

> through is praying. this has affected my whole life and relationships, i

> just lost one and 'this' was part of the reason. SOMEone has to know how we

> can bring this out. donnie

>

[Guest guest]

I hate to be the nay sayer here but I have to wonder if research will even be the answer. We can all cry research but they've been researching cancer for decades. They've been researching aids for decades, muscular dystrophy, tourettes, etc, etc, and while they have created some small headway, some various drugs, treatments that help to a degree, they have never found cures. Remission doesn't always last and some people's bodies are resistant to treatments. So....i think there are a lot of people with this pie in the sky idea that recognition by the NIH will somehow magically reverse our condition. 'Research' is not a magic word. They might not find a cure for us either. So while I do want to be recognized because I want to be able to explain to people why I am the way I am

and have them understand me, and I feel that we should be researched, I for one am glad that I can sit on my duff and whine because, at the end of the day, that is the only real medicine we have. TammyTo: Soundsensitivity Sent: Sat, March 27, 2010 5:18:00 PMSubject: RE: 'THIS' has to get some attention soon

I'm so sorry how badly you suffer with this. I'm sorry that you are losing relationships and not getting to live a "normal" life. I will keep you in my prayers that you can find peace. And you are right--someone needs to figure this out! WE NEED RESEARCH!!

'THIS' has to get some attention soon

today is sat., march 27th, i just read all the posts about how we are 'not' being recognized, my sound sensitivies have gotten so bad that i actually thought of having my psychiatrist put me in the hospital because i was constantly raging over sounds where i live and saying 'i'd rather live in a padded cell'....... .... but then i thought, what will they do for me in the hospital???? i have 'tried' to stay hopeful because i have an opportunity to see an audiologist but down deep, i don't think that is the answer so have put that on hold, no offense to him, it's just that i've learned from all of us here that it's probably just 'masking' and nothing that would really help. i believe in god so the 'only' way i am getting through is praying. this has affected my whole life and relationships, i just lost one and 'this' was part of the reason. SOMEone has to know how we can bring this out. donnie

[Guest guest]

I feel the same way sometimes, Tammy. In the end, I feel I can't do anything to even if we do get some researchers on our side. I can't make any trips 'cause I'm basically at the poverty level, and I can't make any contributions to the effort, either. And in the end, I'm scared there's no cure -not even the white noise generators helped much-, and there have been times when I've been dangerously close to harming my ears; right now, I honestly don't know what I'll do in the future, or if there's no cure and I just snap. My parents, boyfriend, boyfriend's family, and so many others hurt my ears, and all I can do is cringe, flinch, jump, sniff loudly to block it out, wear headphones, sometimes snap at the people hurting me, and bitch my little head off.= M-F.To: Soundsensitivity From: tgcase1@...Date: Mon, 29 Mar 2010 13:43:11 -0700Subject: Re: 'THIS' has to get some attention soon> I hate to be the nay sayer here but I have to wonder if research will even be the answer. We can all cry research but they've been researching cancer for decades. They've been researching aids for decades, muscular dystrophy, tourettes, etc, etc, and while they have created some small headway, some various drugs, treatments that help to a degree, they have never found cures. Remission doesn't always last and some people's bodies are resistant to treatments. So....i think there are a lot of people with this pie in the sky idea that recognition by the NIH will somehow magically reverse our condition. 'Research' is not a magic word. They might not find a cure for us either. So while I do want to be recognized because I want to be able to explain to people why I am the way I am

and have them understand me, and I feel that we should be researched, I for one am glad that I can sit on my duff and whine because, at the end of the day, that is the only real medicine we have. >Tammy Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn More.

[Guest guest]

hi kathy, i was thinking the same thing, so many commercials on t.v. saying, DO

YOU SUFFER FROM: BLAHBLAHBLAH DISORDER???? i mean, i know people do suffer from

things like 'seasonal anxiety disorder' but how did those things get studied and

recognized? there are a lot of them that just seem rediculous, no offense to

any one who has them but 'this' is at least as serious as any they've studied.

>

> I agree, RIchard. There are so many bizarre conditions and diseases out there

that they have found causes and treatments for. I pay a lot of taxes and feel

that my daughter has every right for grant money to be allocated to find the

cause this condition. Sometimes it angers me when I hear of the stupid research

studies they do and waste so much money doing them. This condition affects so

so many people and the quality of their lives. It needs to be researched! They

might not find anything tangible, but I want them to at least try!!

>

>

> 'THIS' has to get some attention soon

>

>

>

> today is sat., march 27th, i just read all the posts about how we are

'not' being recognized, my sound sensitivies have gotten so bad that i actually

thought of having my psychiatrist put me in the hospital because i was

constantly raging over sounds where i live and saying 'i'd rather live in a

padded cell'....... .... but then i thought, what will they do for me in the

hospital???? i have 'tried' to stay hopeful because i have an opportunity to see

an audiologist but down deep, i don't think that is the answer so have put that

on hold, no offense to him, it's just that i've learned from all of us here that

it's probably just 'masking' and nothing that would really help. i believe in

god so the 'only' way i am getting through is praying. this has affected my

whole life and relationships, i just lost one and 'this' was part of the reason.

SOMEone has to know how we can bring this out. donnie

>