Re: Fwd: Our Weekly Sarcoidosis Chat Topic

[Guest guest]

Connie,

How long have you been divorced? I am not trying to get too personal

but I was wondering if your illness had anything to do with your

divorce? I do not have a definitive diagnosis; NS is a suggested

diagnosis. I was wondering how you have dealt with your illness and

being single. Do you live with your Mom?

Sorry so many questions...just not sure what I am going to do with my

current situation.

Thanks.

Terri G.

In a message dated 4/17/06 6:06:48 PM Pacific

> Daylight Time, mamadogrose@... writes:

>

>

> Is this the one from Trevor's group?

>

>

> I don't know

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Connie,

How long have you been divorced? I am not trying to get too personal

but I was wondering if your illness had anything to do with your

divorce? I do not have a definitive diagnosis; NS is a suggested

diagnosis. I was wondering how you have dealt with your illness and

being single. Do you live with your Mom?

Sorry so many questions...just not sure what I am going to do with my

current situation.

Thanks.

Terri G.

In a message dated 4/17/06 6:06:48 PM Pacific

> Daylight Time, mamadogrose@... writes:

>

>

> Is this the one from Trevor's group?

>

>

> I don't know

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Connie, actually I think it's this stupid Hotmail. I'd love to go back to Outlook Express, but it was such a hassle switching to Hotmail & trying to notify everyone (I forgot all my utility companies & my bank) that I haven't been able to scrounge up enough willpower to do it again.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Mon, 1 May 2006 15:15:59 -0700 (PDT)

I am not exactly a computer wiz, but the machine I use is good. If someone can tell me how to do that I would be glad to send it in a different format.

I think I may have offended someone when I emailed about the sunglasses, I didn't mean to. It is so nice to have someone to talk to, I do not say much around my family because it hurts them to bad, my mama especially. I am divorced, so that pretty much leaves just me. Rose wrote:

Connie, it's good to "meet" you. It sounds like you have a lot to offer in the way of information & encouragement. I hope we hear from you more often! Unfortunately, the way your SSDI info printed out, I couldn't read a lot of it. It just stretched out too far on the right side & I couldn't adjust my viewing area enough. I don't know if you can send it in another format?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Sat, 29 Apr 2006 06:56:21 -0700 (PDT)

I am new to your site, and this is the first email I have written. I have biopsy confirmed sarcoidosis, with an agressive streak. I am a little bashful about emailing, but I thought the information below just might help someone.

The reason I am writing is the email from adrian white (odd, that's my maiden name) I work in vocational rehabilitation (good thing with all the doctors appointments, etc I have); and we just recently received information that the law has recently changed in social security. The information we received from our region office read like this.....Individuals who are clearly disabled could be approved for disability benefits in as little as 20 days under a process to be rolled out by the Social Security Administration, the Associated Press reported. The new procedures, to be finalized today, (3/28/06); could cut at least nine months off the roughly three years it takes people seeking disability benefits to work through the entire process for appealing decisions when benefits are denied.

Social Security Commissioner Jo Anne Barnhart said six states in the Northeast will be the first to use the revised system, beginning August 1, 2006. People who applied for benefits before the change will still operate under the old procedures.

The changes will be implemented in a second region about a year later, with new procedures put in place nationwide over several years.

Among the changes, a special unit will screen applicants for cases of clear disability that can be quickly approved for benefits. Other changes aim to give applicants a faster and more meaningful reconsideration in cases when claims are denied.

Hope the info will be helpful////

A sister sarc....Connie

Rose wrote:

, the chats won't replace this group. I don't know who first came up with the name "chats" instead of conversations, talks, yakkity-yak, or whatever. Just when I was learning some of the abbreviations, we stopped them, so I'll have to study up. It's kind of like IM/instant messaging with several people at once. I've never gotten very good at IM, either. I did get on with Darlene or somebody with my webcam & scared her silly. Anyway, we'll all still be here!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Thu, 27 Apr 2006 16:22:33 -0700 (PDT)

Rose,

This "CHAT" stuff is mumbo jumbo. Why can't y'all just talk? Send these thoughts by Extra Sensory Persection???? Pigeon r Express, or Road Runner not Poney Express no more transcontiental super super hyper triple turbocharged horses loaded down with millions of gallons of high octane coffee??????

Joke session over. I can't do this chat stuff on these computers at the libriaries. It isn't allowed, although some have done this I suspect.

Rose wrote:

, have you contacted an attorney? There are attorneys that specialize in disability cases. They will not charge you until you receive benefits; then they collect a percentage of the lump sum that is retroactive to when you first applied. I don't remember the percentage, but there is a limit. These people know the ins & outs, will remind you when more forms are needed. That's important, because if you don't file the appeals on time, you have to start over & lose any benefits that you had earned. Do you have a friend or family member that will help you with this?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Tue, 25 Apr 2006 09:57:18 -0700 (PDT)

IM WRITING TO STATE REPS TO HELP GET AND UNDERSTANDING ABOUT SARCOIDOSIS AND WHERE IT LEAVES PEOPLE ,I NEED HELP WITH IT SEEMS TO BE A PROBLEM GETTING HELP AND SERVICES FOR ME I WAS WORKING TWO JOS FOR YEARS IM WAITING FOR TO SEND ME MY PAPER WORK .I THEN I TO WAIT TO IF ITS APROVED FOR 90 DAYS THEN SSI TAKES FOREVER .I WOULD TOD A FUNDRASER WITH DRS .ALSO TRAVEL AND PUT ON WAYS OF DEALING WITH THIS

Rose wrote:

, can you explain a little about what you are doing? Thanks!Ramblin' RoseModeratorFrom: adrian white Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Mon, 17 Apr 2006 18:51:27 -0700 (PDT)im trying a fund rasing started through the lung foundationtiodaat@... wrote: Is this the one from Trevor's group?I don't know~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi Terri, No problem with the asking. No the divorce had absolutely nothing to do with the sarc. I had it long before the divorce. I had to move back closer to my family due to the bad days, unfortunately that came to about a $5000.00 pay cut. My rule for working is...if I can stand up I go to work. God has been very good to me in that I work for a state agency that specializes in keeping disabled people working, and I have top notch insurance. I have a terrific boss who understands what my illness demands, i.e. many doctors visits, testing, and times when I have to be off. I do live with my mother and we get along very well - we've always been very close. I dream of moving out on my own again, but realistically I don't if it will ever happen. For one my mama would have a fit, and probably drive me nuts worrying. It's so odd, but I'm glad....

my mother who is 70 is way healthier, looks great and gets around like she's my age. I saw a recent photograph of myself this weekend and didn't recognize myself. Oh well!! The major disadvantage to being single comes when I need someone to talk to. I hate to see the worry & hurt in my families eyes if I talk to them, so most of the time I don't unless I'm so sick there's no need for me to say anything. My standard answer for "are you OK?" is "I'm fine". One of the most important things I have learned is that things are not important, only people. Then I remember that God loves me and I'll get through this with His help, I just have to "just keep swimming" and when things get to hairy...."I go to my happy place(s)". Sounds corny, but it works. How long have you been sick, if you don't mind my asking?mosaicgirl1

wrote: Connie,How long have you been divorced? I am not trying to get too personalbut I was wondering if your illness had anything to do with yourdivorce? I do not have a definitive diagnosis; NS is a suggesteddiagnosis. I was wondering how you have dealt with your illness andbeing single. Do you live with your Mom?Sorry so many questions...just not sure what I am going to do with mycurrent situation.Thanks.Terri G. >>> Is this the one from Trevor's group?>>> I don't know>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> NS CHAT:- Has been cancelled for now.>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

I'll take your word for it, cause I don't have a clue////Connie Thanks anywayRose wrote: Connie, actually I think it's this stupid Hotmail. I'd love to go back to Outlook Express, but it was such a hassle switching to Hotmail & trying to notify everyone (I forgot all my utility companies & my bank) that I haven't been able to scrounge up enough willpower to do it again. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Mon, 1 May 2006 15:15:59 -0700 (PDT) I am not exactly a computer wiz, but the machine I use is good. If someone can tell me how to do that I would be glad to send it in a different format. I think I may have offended someone when I emailed about the sunglasses, I didn't mean to. It is so nice to have someone to talk to, I do not say much around my family because it hurts them to bad, my mama especially. I am divorced, so that pretty much leaves just me. Rose wrote:

Connie, it's good to "meet" you. It sounds like you have a lot to offer in the way of information & encouragement. I hope we hear from you more often! Unfortunately, the way your SSDI info printed out, I couldn't read a lot of it. It just stretched out too far on the right side & I couldn't adjust my viewing area enough. I don't know if you can send it in another format? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Sat, 29 Apr 2006 06:56:21 -0700 (PDT) I am new to your site, and this is the first email I have written. I have biopsy confirmed sarcoidosis, with an agressive streak. I am a little bashful about emailing, but I thought the information below just might help someone. The reason I am writing is the email from adrian white (odd, that's my maiden name) I work in vocational rehabilitation (good thing with all the doctors appointments, etc I have); and we just recently received information that the law has recently changed in social security. The information we received

from our region office read like this.....Individuals who are clearly disabled could be approved for disability benefits in as little as 20 days under a process to be rolled out by the Social Security Administration, the Associated Press reported. The new procedures, to be finalized today, (3/28/06); could cut at least nine months off the roughly three years it takes people seeking disability benefits to work through the entire process for appealing decisions when benefits are denied. Social Security Commissioner Jo Anne Barnhart said six states in the Northeast will be the first to use the revised system, beginning August 1, 2006. People who applied for benefits before the change will still operate under the old procedures. The changes will be implemented in a second region about a year later, with new procedures

put in place nationwide over several years. Among the changes, a special unit will screen applicants for cases of clear disability that can be quickly approved for benefits. Other changes aim to give applicants a faster and more meaningful reconsideration in cases when claims are denied. Hope the info will be helpful//// A sister sarc....Connie Rose wrote: , the chats won't replace this group. I don't know who first came up with the name "chats" instead of conversations, talks, yakkity-yak, or whatever. Just when I was learning some of the abbreviations, we stopped them, so I'll have to study

up. It's kind of like IM/instant messaging with several people at once. I've never gotten very good at IM, either. I did get on with Darlene or somebody with my webcam & scared her silly. Anyway, we'll all still be here! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our

Weekly Sarcoidosis Chat TopicDate: Thu, 27 Apr 2006 16:22:33 -0700 (PDT) Rose, This "CHAT" stuff is mumbo jumbo. Why can't y'all just talk? Send these thoughts by Extra Sensory Persection???? Pigeon r Express, or Road Runner not Poney Express no more transcontiental super super hyper triple turbocharged horses loaded down with millions of gallons of high octane coffee?????? Joke session over. I can't do this chat stuff on these computers at the libriaries. It isn't allowed, although some have done this I suspect. Rose wrote: , have you contacted an attorney? There are attorneys that specialize in disability cases. They will not charge you until you receive benefits; then

they collect a percentage of the lump sum that is retroactive to when you first applied. I don't remember the percentage, but there is a limit. These people know the ins & outs, will remind you when more forms are needed. That's important, because if you don't file the appeals on time, you have to start over & lose any benefits that you had earned. Do you have a friend or family member that will help you with this? Ramblin' Rose Moderator From:

adrian white Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Tue, 25 Apr 2006 09:57:18 -0700 (PDT) IM WRITING TO STATE REPS TO HELP GET AND UNDERSTANDING ABOUT SARCOIDOSIS AND WHERE IT LEAVES PEOPLE ,I NEED HELP WITH IT SEEMS TO BE A PROBLEM GETTING HELP AND SERVICES FOR ME I WAS WORKING TWO JOS FOR YEARS IM WAITING FOR TO SEND ME MY PAPER WORK .I THEN I TO WAIT TO IF ITS APROVED FOR 90 DAYS THEN SSI TAKES FOREVER .I WOULD TOD A FUNDRASER WITH DRS .ALSO TRAVEL AND PUT ON WAYS OF DEALING WITH THIS Rose wrote: , can you explain a little about what you are doing? Thanks!Ramblin' RoseModeratorFrom: adrian white Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Fwd: Our Weekly Sarcoidosis Chat TopicDate: Mon, 17 Apr 2006 18:51:27 -0700 (PDT)im trying a fund rasing started through the lung foundationtiodaat@... wrote: Is this the one from Trevor's group?I don't know~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for

now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Connie,

I have been sick for about 2 1/2 years. I have a presumptive diagnosis of NS but was treated for the 1st nine months for MS. I learned to give myself injections and the whole nine yards. I went to s Hopkins and they stopped the treatments and stated it was probably from NS. I go this week for another chest CT (I have them every 3 months) and then I see the pulmonologist next Tuesday. I got to see the report from the Dr. I saw at Duke and he thinks it is all in my head. One of my major symptoms is a neurogenic bladder. If I was crazy, I could not have a neurogenic bladder. My urologist is very concerned that my neurological problems have not been addressed. I explained what the Dr. at Duke thought, and he said it is impossible to have this problem unless you have a neurological problem. So go figure. I have really been fighting some depression from this but I am a fighter and I am not going to give up.

I know that stress plays a big part in aggrevating an illness and I am trying to deal with that. I have started weight watchers. I have completed my third week and have lost about 5 pounds (the doctors thought this might help me). I am doing everything they have suggested so it cannot be said that I did not follow all of the instructions so all of the docs can see I am not faking it, it is not all in my head and they can kiss my patootie.

Whew, I needed to get that off my chest. Say a prayer for me Connie; I know that with faith and patience, everything will become clear.

Terri G.

PS - , my email address is mosaicgirl1@... so please write me anytime.

In a message dated 4/17/06 6:06:48 PM Pacific> > Daylight Time, mamadogrose@ writes:> >> >> > Is this the one from Trevor's group?> >> >> > I don't know> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> > NS CHAT:- Has been cancelled for now.> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> >

[Guest guest]

Connie,

I have been sick for about 2 1/2 years. I have a presumptive diagnosis of NS but was treated for the 1st nine months for MS. I learned to give myself injections and the whole nine yards. I went to s Hopkins and they stopped the treatments and stated it was probably from NS. I go this week for another chest CT (I have them every 3 months) and then I see the pulmonologist next Tuesday. I got to see the report from the Dr. I saw at Duke and he thinks it is all in my head. One of my major symptoms is a neurogenic bladder. If I was crazy, I could not have a neurogenic bladder. My urologist is very concerned that my neurological problems have not been addressed. I explained what the Dr. at Duke thought, and he said it is impossible to have this problem unless you have a neurological problem. So go figure. I have really been fighting some depression from this but I am a fighter and I am not going to give up.

I know that stress plays a big part in aggrevating an illness and I am trying to deal with that. I have started weight watchers. I have completed my third week and have lost about 5 pounds (the doctors thought this might help me). I am doing everything they have suggested so it cannot be said that I did not follow all of the instructions so all of the docs can see I am not faking it, it is not all in my head and they can kiss my patootie.

Whew, I needed to get that off my chest. Say a prayer for me Connie; I know that with faith and patience, everything will become clear.

Terri G.

PS - , my email address is mosaicgirl1@... so please write me anytime.

In a message dated 4/17/06 6:06:48 PM Pacific> > Daylight Time, mamadogrose@ writes:> >> >> > Is this the one from Trevor's group?> >> >> > I don't know> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> > NS CHAT:- Has been cancelled for now.> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> >