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Matt in seattle

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--- pickstands@... wrote:

>

>

> In a message dated 6/17/2005 5:27:52 P.M. Eastern

> Standard Time,

> belltown_mac@... writes:

>

> My headaches have gone down and the lump under my

> arm is alot

> smaller. (Hip-Hip-Hooray!!!...Yahoo!...Yippee!!!)

> i have my meeting with

> the state welfare people next tuesday to find out if

> i get

> on the state version of SSDI. (How did you

> do?!?!? ... do all states have

> this? ... does this supplement the federal SSDI

> once awarded? ...or does it

> stop once you win your federal SSDI? ... I wonder

> if NJ has anything like

> this?...I guess my SS attorney would have told me

> so???)

> Joan, thanks for the nice compliment. (You are

> quite welcome!)

>

>

> I Dont know if any other states have this same

program. the way it works in Wash state is the state

pays for your SSDI payments untill u get on SSDi then

I have to reimburse the state out of any money i get

from the federal govt from a back payment check. My

guess is that other states have this program they just

dont let people know about it so u might want to ask

your lawyer or call the local welfare office to look

into it. The reason y Wash state does it is because

trhey know that they get all there money back once

someone goes on SSDI. I encourage eveyone who is

waiting to get on SSDI to check with their local state

to see if they have this same program. The requirement

in Wash State is that u must have applied to SSDI and

have a lawyer helping u to get on it if u have been

turned down one time. And of course have a ligitimate

illness that makes u disabled.

One other thing- Dont assume your lawyer knows about

this program- mine didnt-i had to tell him about it,

Here the program is called G.A.X. but they may call it

other names in other states.

>

>

> wings have trouble remembering how to fly. "

>

__________________________________

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Take Yahoo! Mail with you! Check email on your mobile phone.

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Guest guest

--- pickstands@... wrote:

>

>

> In a message dated 6/17/2005 5:27:52 P.M. Eastern

> Standard Time,

> belltown_mac@... writes:

>

> My headaches have gone down and the lump under my

> arm is alot

> smaller. (Hip-Hip-Hooray!!!...Yahoo!...Yippee!!!)

> i have my meeting with

> the state welfare people next tuesday to find out if

> i get

> on the state version of SSDI. (How did you

> do?!?!? ... do all states have

> this? ... does this supplement the federal SSDI

> once awarded? ...or does it

> stop once you win your federal SSDI? ... I wonder

> if NJ has anything like

> this?...I guess my SS attorney would have told me

> so???)

> Joan, thanks for the nice compliment. (You are

> quite welcome!)

>

>

> I Dont know if any other states have this same

program. the way it works in Wash state is the state

pays for your SSDI payments untill u get on SSDi then

I have to reimburse the state out of any money i get

from the federal govt from a back payment check. My

guess is that other states have this program they just

dont let people know about it so u might want to ask

your lawyer or call the local welfare office to look

into it. The reason y Wash state does it is because

trhey know that they get all there money back once

someone goes on SSDI. I encourage eveyone who is

waiting to get on SSDI to check with their local state

to see if they have this same program. The requirement

in Wash State is that u must have applied to SSDI and

have a lawyer helping u to get on it if u have been

turned down one time. And of course have a ligitimate

illness that makes u disabled.

One other thing- Dont assume your lawyer knows about

this program- mine didnt-i had to tell him about it,

Here the program is called G.A.X. but they may call it

other names in other states.

>

>

> wings have trouble remembering how to fly. "

>

__________________________________

Yahoo! Mail Mobile

Take Yahoo! Mail with you! Check email on your mobile phone.

http://mobile.yahoo.com/learn/mail

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Guest guest

Matt, the common name is Imuran. Did this committee notify the doctor who

ordered the Remicade? If so, I'm surprised that he didn't call you and

explain it. This isn't a substitution; these drugs are in entirely classes

with different actions. Rose

Re: matt in seattle

>

>

> --- pickstands@... wrote:

>

> >

> >

> > In a message dated 6/17/2005 5:44:22 P.M. Eastern

> > Standard Time,

> > NeuroSarcoid66@... writes:

> >

> > Matt

> >

> > Congrats on the Remicade! Everyone says it is a

> > miracle drug for Sarc. among

> > other things. I am anxious to know how you do with

> > it. Keep us posted.

> >

> > Take care,

> > Kim

> > NS Moderator

> >

> > Kim- I had a surprize when i went to the doc the

> other day and they told me the new meds were not

> Remicade as i had thought but were someting else . It

> turns out

> >that the health co-op that i belong to has this

> commitee that reviews all med requests from the docs

> and they turned me down for Remicade so the doc

> changed it to this new med which no one told me about

> untill i asked about it. the name on the bottle says

> Azathioprine but i cant remember its more common name.

> im glad i happened to ask about the new meds because

> otherwise i dont know if they would have ever told me

> that it had been changed. Take Care, Matt

> >

> >

> > Why can't you try Remicade?

> >

> > Miss you!!!,

> > Joan

> >

> > " I believe that friends are quiet angels who lift

> > us to our feet when our

> > wings have trouble remembering how to fly. "

> >

>

>

> __________________________________________________

>

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--- Rose mamadog@...> wrote:

> Matt, the common name is Imuran. Did this committee

> notify the doctor who

> ordered the Remicade? If so, I'm surprised that he

> didn't call you and

> explain it. This isn't a substitution; these drugs

> are in entirely classes

> with different actions. Rose

>Hi Rose- thanks for the name of the med-The doc was

notified- they just forgot to tell me that they had

swiched. I still dont even know y the switch was

made, or y I couldnt get remicade-. If i hadnt asked i

would have gone on beliving i was taking Remicade. At

this point I dont know anything about this med as i

usually get a written statement about every med i take

but didnt get one with Imuran. So any info that

people have about it would be helpful. Thanks Matt

> Re: matt in seattle

>

>

> >

> >

> > --- pickstands@... wrote:

> >

> > >

> > >

> > > In a message dated 6/17/2005 5:44:22 P.M.

> Eastern

> > > Standard Time,

> > > NeuroSarcoid66@... writes:

> > >

> > > Matt

> > >

> > > Congrats on the Remicade! Everyone says it is a

> > > miracle drug for Sarc. among

> > > other things. I am anxious to know how you do

> with

> > > it. Keep us posted.

> > >

> > > Take care,

> > > Kim

> > > NS Moderator

> > >

> > > Kim- I had a surprize when i went to the doc the

> > other day and they told me the new meds were not

> > Remicade as i had thought but were someting else .

> It

> > turns out

> > >that the health co-op that i belong to has this

> > commitee that reviews all med requests from the

> docs

> > and they turned me down for Remicade so the doc

> > changed it to this new med which no one told me

> about

> > untill i asked about it. the name on the bottle

> says

> > Azathioprine but i cant remember its more common

> name.

> > im glad i happened to ask about the new meds

> because

> > otherwise i dont know if they would have ever told

> me

> > that it had been changed. Take Care, Matt

> > >

> > >

> > > Why can't you try Remicade?

> > >

> > > Miss you!!!,

> > > Joan

> > >

> > > " I believe that friends are quiet angels who

> lift

> > > us to our feet when our

> > > wings have trouble remembering how to fly. "

> > >

> >

> >

> > __________________________________________________

> >

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Guest guest

Matt, that's great! I think I'll move to Washington! You really seem to

have good health benefits. I have friends who moved to Sunnyside several

years ago from Indiana. She is a pastor; he used to be a pastor &

missionary, but was disabled from Huntington's disease. When she was

looking for a church, she picked Sunnyside because Marvin could get

insurance coverage in Washington even with Huntington's. If most of my

family weren't here, I'd be on the way. On the other hand, that might be a

reason to pack up & go! Rose

matt in seattle

> Good news today- i got my first check from the state of WAsh to cover my

SSDi payments

> untill i go on SSDi.. I also get medical coupons that will pay for my

meds. Sometime next

> week I should get medicare to cover my doctor appts. My life will

definitly be easier with

> these programs. Take care , Matt

>

>

>

>

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

> 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

>

>

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Guest guest

Matt, that's great! I think I'll move to Washington! You really seem to

have good health benefits. I have friends who moved to Sunnyside several

years ago from Indiana. She is a pastor; he used to be a pastor &

missionary, but was disabled from Huntington's disease. When she was

looking for a church, she picked Sunnyside because Marvin could get

insurance coverage in Washington even with Huntington's. If most of my

family weren't here, I'd be on the way. On the other hand, that might be a

reason to pack up & go! Rose

matt in seattle

> Good news today- i got my first check from the state of WAsh to cover my

SSDi payments

> untill i go on SSDi.. I also get medical coupons that will pay for my

meds. Sometime next

> week I should get medicare to cover my doctor appts. My life will

definitly be easier with

> these programs. Take care , Matt

>

>

>

>

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

> 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

>

>

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Guest guest

Matt, that's great! I think I'll move to Washington! You really seem to

have good health benefits. I have friends who moved to Sunnyside several

years ago from Indiana. She is a pastor; he used to be a pastor &

missionary, but was disabled from Huntington's disease. When she was

looking for a church, she picked Sunnyside because Marvin could get

insurance coverage in Washington even with Huntington's. If most of my

family weren't here, I'd be on the way. On the other hand, that might be a

reason to pack up & go! Rose

matt in seattle

> Good news today- i got my first check from the state of WAsh to cover my

SSDi payments

> untill i go on SSDi.. I also get medical coupons that will pay for my

meds. Sometime next

> week I should get medicare to cover my doctor appts. My life will

definitly be easier with

> these programs. Take care , Matt

>

>

>

>

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

> 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

>

>

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Guest guest

Matt, most likely they didn't give you Remicade because it costs thousands

of dollars per dose. Imuran is an immune suppressant or immune modifier; I

forget which. In the links at the bottom of this message, there is a site

to look up your meds. I have one of those pharmacy info sheets somewhere,

but you could probably find it on the link quicker! Rose

Re: matt in seattle

> >

> >

> > >

> > >

> > > --- pickstands@... wrote:

> > >

> > > >

> > > >

> > > > In a message dated 6/17/2005 5:44:22 P.M.

> > Eastern

> > > > Standard Time,

> > > > NeuroSarcoid66@... writes:

> > > >

> > > > Matt

> > > >

> > > > Congrats on the Remicade! Everyone says it is a

> > > > miracle drug for Sarc. among

> > > > other things. I am anxious to know how you do

> > with

> > > > it. Keep us posted.

> > > >

> > > > Take care,

> > > > Kim

> > > > NS Moderator

> > > >

> > > > Kim- I had a surprize when i went to the doc the

> > > other day and they told me the new meds were not

> > > Remicade as i had thought but were someting else .

> > It

> > > turns out

> > > >that the health co-op that i belong to has this

> > > commitee that reviews all med requests from the

> > docs

> > > and they turned me down for Remicade so the doc

> > > changed it to this new med which no one told me

> > about

> > > untill i asked about it. the name on the bottle

> > says

> > > Azathioprine but i cant remember its more common

> > name.

> > > im glad i happened to ask about the new meds

> > because

> > > otherwise i dont know if they would have ever told

> > me

> > > that it had been changed. Take Care, Matt

> > > >

> > > >

> > > > Why can't you try Remicade?

> > > >

> > > > Miss you!!!,

> > > > Joan

> > > >

> > > > " I believe that friends are quiet angels who

> > lift

> > > > us to our feet when our

> > > > wings have trouble remembering how to fly. "

> > > >

> > >

> > >

> > > __________________________________________________

> > >

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Guest guest

Matt, most likely they didn't give you Remicade because it costs thousands

of dollars per dose. Imuran is an immune suppressant or immune modifier; I

forget which. In the links at the bottom of this message, there is a site

to look up your meds. I have one of those pharmacy info sheets somewhere,

but you could probably find it on the link quicker! Rose

Re: matt in seattle

> >

> >

> > >

> > >

> > > --- pickstands@... wrote:

> > >

> > > >

> > > >

> > > > In a message dated 6/17/2005 5:44:22 P.M.

> > Eastern

> > > > Standard Time,

> > > > NeuroSarcoid66@... writes:

> > > >

> > > > Matt

> > > >

> > > > Congrats on the Remicade! Everyone says it is a

> > > > miracle drug for Sarc. among

> > > > other things. I am anxious to know how you do

> > with

> > > > it. Keep us posted.

> > > >

> > > > Take care,

> > > > Kim

> > > > NS Moderator

> > > >

> > > > Kim- I had a surprize when i went to the doc the

> > > other day and they told me the new meds were not

> > > Remicade as i had thought but were someting else .

> > It

> > > turns out

> > > >that the health co-op that i belong to has this

> > > commitee that reviews all med requests from the

> > docs

> > > and they turned me down for Remicade so the doc

> > > changed it to this new med which no one told me

> > about

> > > untill i asked about it. the name on the bottle

> > says

> > > Azathioprine but i cant remember its more common

> > name.

> > > im glad i happened to ask about the new meds

> > because

> > > otherwise i dont know if they would have ever told

> > me

> > > that it had been changed. Take Care, Matt

> > > >

> > > >

> > > > Why can't you try Remicade?

> > > >

> > > > Miss you!!!,

> > > > Joan

> > > >

> > > > " I believe that friends are quiet angels who

> > lift

> > > > us to our feet when our

> > > > wings have trouble remembering how to fly. "

> > > >

> > >

> > >

> > > __________________________________________________

> > >

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Matt, most likely they didn't give you Remicade because it costs thousands

of dollars per dose. Imuran is an immune suppressant or immune modifier; I

forget which. In the links at the bottom of this message, there is a site

to look up your meds. I have one of those pharmacy info sheets somewhere,

but you could probably find it on the link quicker! Rose

Re: matt in seattle

> >

> >

> > >

> > >

> > > --- pickstands@... wrote:

> > >

> > > >

> > > >

> > > > In a message dated 6/17/2005 5:44:22 P.M.

> > Eastern

> > > > Standard Time,

> > > > NeuroSarcoid66@... writes:

> > > >

> > > > Matt

> > > >

> > > > Congrats on the Remicade! Everyone says it is a

> > > > miracle drug for Sarc. among

> > > > other things. I am anxious to know how you do

> > with

> > > > it. Keep us posted.

> > > >

> > > > Take care,

> > > > Kim

> > > > NS Moderator

> > > >

> > > > Kim- I had a surprize when i went to the doc the

> > > other day and they told me the new meds were not

> > > Remicade as i had thought but were someting else .

> > It

> > > turns out

> > > >that the health co-op that i belong to has this

> > > commitee that reviews all med requests from the

> > docs

> > > and they turned me down for Remicade so the doc

> > > changed it to this new med which no one told me

> > about

> > > untill i asked about it. the name on the bottle

> > says

> > > Azathioprine but i cant remember its more common

> > name.

> > > im glad i happened to ask about the new meds

> > because

> > > otherwise i dont know if they would have ever told

> > me

> > > that it had been changed. Take Care, Matt

> > > >

> > > >

> > > > Why can't you try Remicade?

> > > >

> > > > Miss you!!!,

> > > > Joan

> > > >

> > > > " I believe that friends are quiet angels who

> > lift

> > > > us to our feet when our

> > > > wings have trouble remembering how to fly. "

> > > >

> > >

> > >

> > > __________________________________________________

> > >

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HI MATT, I AM JUST WRITING TO TELL YOU THANK YOU AND I LOVE YOU ALL FOR YOUR INCREDIBLE SUPPORT. GOD BLESS AND KEEP YOU.

LAWONDA Cohen wrote:

--- Rose wrote:> Matt, that's great! I think I'll move to> Washington! You really seem to> have good health benefits. I have friends who moved> to Sunnyside several> years ago from Indiana. She is a pastor; he used to> be a pastor & > missionary, but was disabled from Huntington's> disease. When she was> looking for a church, she picked Sunnyside because> Marvin could get> insurance coverage in Washington even with> Huntington's. If most of my> family weren't here, I'd be on the way. On the> other hand, that might be a> reason to pack up & go! Rose> >Hi Rose- I am lucky in that Wa State does have suchgood benifits. >I was thinking of moving a few years

ago but realizedWa state had much better health services then anywhereelse that I thought of moving to. Take care, Matt > > > > Good news today- i got my first check from the> state of WAsh to cover my> SSDi payments> > untill i go on SSDi.. I also get medical coupons> that will pay for my> meds. Sometime next> > week I should get medicare to cover my doctor> appts. My life will> definitly be easier with> > these programs. Take care , Matt> >> >> >> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > 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> >> >

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--- KENNETH CAMPBELL cambell.ken@...>

wrote:

> HI MATT, I AM JUST WRITING TO TELL YOU THANK YOU AND

> I LOVE YOU ALL FOR YOUR INCREDIBLE SUPPORT. GOD

> BLESS AND KEEP YOU.

>

> LAWONDA

> Hi Lawonda-Glad we could help-The facilitators on

the line are fantastic- dont hesitate to use them .

they are very knowleable and helpfull. Keep in touch ,

Matt

>

>

> --- Rose mamadog@...> wrote:

>

> > Matt, that's great! I think I'll move to

> > Washington! You really seem to

> > have good health benefits. I have friends who

> moved

> > to Sunnyside several

> > years ago from Indiana. She is a pastor; he used

> to

> > be a pastor &

> > missionary, but was disabled from Huntington's

> > disease. When she was

> > looking for a church, she picked Sunnyside because

> > Marvin could get

> > insurance coverage in Washington even with

> > Huntington's. If most of my

> > family weren't here, I'd be on the way. On the

> > other hand, that might be a

> > reason to pack up & go! Rose

> >

> >Hi Rose- I am lucky in that Wa State does have such

> good benifits.

> >I was thinking of moving a few years ago but

> realized

> Wa state had much better health services then

> anywhere

> else that I thought of moving to. Take care, Matt

> >

> >

> > > Good news today- i got my first check from the

> > state of WAsh to cover my

> > SSDi payments

> > > untill i go on SSDi.. I also get medical

> coupons

> > that will pay for my

> > meds. Sometime next

> > > week I should get medicare to cover my doctor

> > appts. My life will

> > definitly be easier with

> > > these programs. Take care , Matt

> > >

> > >

> > >

> > >

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

> > > 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

> > >

> > >

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Guest guest

Matt that is awesome, that take some stress of you. I don't know why all these disability people don't understand the stress they put on us when they refuse the disability. Congraulations to YOu,

May you have a blessed day.

Marla

matt in seattle

Good news today- i got my first check from the state of WAsh to cover my SSDi payments untill i go on SSDi.. I also get medical coupons that will pay for my meds. Sometime next week I should get medicare to cover my doctor appts. My life will definitly be easier with these programs. Take care , Matt~~~~ *** ~~~ *** ~~~ *** ~~~~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

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Matt

This is really great news. I am truly happy for you, good when things go right somewhere for someone! Sleep peacefully tonight friend!

Take care,

Kim

NS Moderator

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Guest guest

Wonderful news, Matt! Glad to hear some good news for a change.

I know this will help a lot. Please keep us posted.

Hugs,

Darlene

NS Co-Owner/Moderator

To: Neurosarcoidosis

Sent: Friday, June 24, 2005 3:36 PM

Subject: matt in seattle

Good news today- i got my first check from the state of WAsh to cover my SSDi payments untill i go on SSDi.. I also get medical coupons that will pay for my meds. Sometime next week I should get medicare to cover my doctor appts. My life will definitly be easier with these programs. Take care , Matt~~~~ *** ~~~ *** ~~~ *** ~~~~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

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--- Darlene darlene@...> wrote:

> Wonderful news, Matt! Glad to hear some good news

> for a change.

> I know this will help a lot. Please keep us

> posted.

> Hugs,

> Darlene

> NS Co-Owner/Moderator

>

>

> Hi Darlene-Another good news day for me- I got my

med coupons from the state today, They should pay for

all of my meds and possibly all my doc appts. This

along with the food stamps and money gives me a lot

less to worry about. take Care, Matt

>

>

>

> To: Neurosarcoidosis

> Sent: Friday, June 24, 2005 3:36 PM

> Subject: matt in seattle

>

>

> Good news today- i got my first check from the

> state of WAsh to cover my SSDi payments

> untill i go on SSDi.. I also get medical coupons

> that will pay for my meds. Sometime next

> week I should get medicare to cover my doctor

> appts. My life will definitly be easier with

> these programs. Take care , Matt

>

>

>

>

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

> 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

>

>

>

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--- Marla mbramer@...> wrote:

> Matt that is awesome, that take some stress of you.

> I don't know why all these disability people don't

> understand the stress they put on us when they

> refuse the disability. Congraulations to YOu,

> May you have a blessed day.

> Marla

>

> Thanks Marla-I hope u are doing well, Take care,

>

> Good news today- i got my first check from the

> state of WAsh to cover my SSDi payments

> untill i go on SSDi.. I also get medical coupons

> that will pay for my meds. Sometime next

> week I should get medicare to cover my doctor

> appts. My life will definitly be easier with

> these programs. Take care , Matt

>

>

>

>

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

> 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

>

>

>

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The other nice thing is that it's a short drive into the mountains! Rose

Re: matt in seattle

>

>

> --- NeuroSarcoid66@... wrote:

>

> > Matt

> >

> > Sorry to hear that you have developed yet another

> > infection. I have started

> > to develop these small " boils " one after the other

> > as well, though they are

> > very small and bother me, they seem to clear up

> > after a few days and then

> > another one starts in a new location. One after

> > another. Its been going on for

> > a few weeks. It stopped for a while in between, but

> > has started up again.

> > I supposed I must have an underlying infection.

> >

> > This, my eye, ... what is up with me?

> >

> > I agree that it will take the Imuran a good while to

> > work, up to the 6

> > months as Darlene said. I was interested in her

> > slow increase, when I started

> > Imuran my increase was very very quick. I was up to

> > the three pills within two

> > weeks. I had a severe allergic reaction and was

> > hospitalized for about two

> > weeks actually. They pulled me off all my meds and

> > clearred my system

> > completely at the time. I remember the Dr saying at

> > the time that he was starting

> > me on the Imuran " nice and slow " to avoid problems.

> > HAHA, then I read about

> > Darlenese real " nice and slow " increase!

> >

> > I am also sorry to hear about your tooth problems.

> > Sometimes when it rains

> > it pours. Too bad it is not pouring with the

> > weather to get rid of some of

> > the " ick " we are having here. Our central air broke

> > a day or so ago and with

> > the holiday my father is having a time getting it

> > fixed. It has put

> > eveyrone in a very grumpy mood. My room has a

> > window unit and so I am not suffering

> > except the nasties everyone is in.

> >

> > Take care,

> > Kim

> > NS Moderator

> > Kim- thanks for the nice reply. They also upped my

> Imuran to three pills after only two weeks. I have

> been luckey so far in that i have had no problems on

> it yet. Im sorry to hear that u are having eye

> o\problems- hope that they get better quickly.When u

> get tired of the hot weather come visit me in seattle.

> One nice thing is it really gets real hot hear, The

> temp has been in the 60's the past few days and rearly

> gets above 80. We sometimes have days in the summer

> when the temp is only in the 50 " s. Take care- Matt

>

>

> __________________________________________________

>

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Well, Matt, my neurologist started me out on 50mg 3x/day and kept me on that

dose for 2 years! I didn't have any side effects. I don't know if it

helped; hard to know what would have happened without it. Rose

matt in seattle

> >

> >

> > Im doing ok- have devoloped another infection, on my

> > chest this time. Didnt get as big as

> > the last one under my arm. have been having good and

> > bad days with my headaches. Doc

> > sdaid that i have to give the Imuran a chance to

> > work. I am up to two a day and go to three

> > tomorrow. Seattle has been having its usual strange

> > weather. One day it is in the 80's and

> > then the next day it is in the low 60's.

> > I broke another tooth this week, It is the third

> > one in the past six months. Luckily they can

> > repair this one and i dont have to have it pulled

> > like the other two.

> > Matt

> >

> >

> >

> >

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

> > 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

> >

> >

> >

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Salt pork really does draw out a boil. Some people would probably worry

about getting mad pig disease or something. You can buy Phos-Flur at a

pharmacy, Walmart, etc. It's in the area with toothpaste, mouth rinses,

etc. My dentist has me swish & rinse in the morning, then swish & swallow

at night. You might check with your dentist. Rose

Re: matt in seattle

>

>

> --- Rose mamadog@...> wrote:

>

> > Matt, my teeth have been a mess since I started

> > Prednisone 3 years ago.

> > Even though I've been off it for a year, I still get

> > lots of cavities &

> > little pieces breaking off. My dentist says that

> > Pred is really hard on the

> > teeth, just like the bones. That makes sense, of

> > course, but I hadn't

> > thought of it. I use Phos-Flur to rinse twice a

> > day; he says he helps.

> > Hey, don't forget to slap a piece of salt pork on

> > that chest, if it looks

> > like a boil! Maybe a couple of slices of bacon

> > would do. Rose

> >

> >Hi Rose- Thanks for the reply. Are u serious About

> the salt pork? does it really work?

> > Where do u get the Phos- flur? Do u need a

> perscription?

> > Hope u are doing well, take care, Matt

> >

> > > Im doing ok- have devoloped another infection, on

> > my chest this time.

> > Didnt get as big as

> > > the last one under my arm. have been having good

> > and bad days with my

> > headaches. Doc

> > > sdaid that i have to give the Imuran a chance to

> > work. I am up to two a

> > day and go to three

> > > tomorrow. Seattle has been having its usual

> > strange weather. One day it

> > is in the 80's and

> > > then the next day it is in the low 60's.

> > > I broke another tooth this week, It is the third

> > one in the past six

> > months. Luckily they can

> > > repair this one and i dont have to have it pulled

> > like the other two.

> > > Matt

> > >

> > >

> > >

> > >

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

> > > 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

> > >

> > >

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Matt

You are right - one thing after the other! I am really sorry about your eye, but at leawst you are on top of it before it is full blown. Like I said before, it is all a full time job isnt it? I know it can certainly fill a day planner some weeks.

That is really good news about your headaches showing some improvement. Any improvement is in the right direction. Are you sending them my way??? Will you stop it?! Just kidding!

Take care and let us know what happens with your eye appt.

Kim

NS Moderator

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--- NeuroSarcoid66@... wrote:

> Matt

>

> You are right - one thing after the other! I am

> really sorry about your

> eye, but at leawst you are on top of it before it is

> full blown. Like I said

> before, it is all a full time job isnt it? I know

> it can certainly fill a day

> planner some weeks.

>

> That is really good news about your headaches

> showing some improvement. Any

> improvement is in the right direction. Are you

> sending them my way??? Will

> you stop it?! Just kidding!

>

> Take care and let us know what happens with your eye

> appt.

>

> Kim

> NS Moderator

You are right-it is a full time job- will keep u

informed- Matt

__________________________________________________

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Hi Matt,

I'm still going through old e-mails ... I'm soooooo very happy for you that you are receiving this "pre-official-SSDI" benefit!!!!

This is just wonderful!

Congratulations!!!

Joan

From: belltown_mac

To: Neurosarcoidosis

Sent: Friday, June 24, 2005 3:36 PM

Subject: matt in seattle

Good news today- i got my first check from the state of WAsh to cover my SSDi payments untill i go on SSDi.. I also get medical coupons that will pay for my meds. Sometime next week I should get medicare to cover my doctor appts. My life will definitly be easier with these programs. Take care , Matt

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

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--- pickstands@... wrote:

>

>

> Hi Matt,

>

> I'm still going through old e-mails ... I'm soooooo

> very happy for you that

> you are receiving this " pre-official-SSDI "

> benefit!!!!

>

> This is just wonderful!

>

> Congratulations!!!

> Joan

>

> Thanks Joan-It definity makes it easier for me->

Take Care, Matt

>

> To: _Neurosarcoidosis _

> (mailto:Neurosarcoidosis )

> Sent: Friday, June 24, 2005 3:36 PM

> Subject: matt in seattle

>

>

> Good news today- i got my first check from the state

> of WAsh to cover my

> SSDi payments

> untill i go on SSDi.. I also get medical coupons

> that will pay for my meds.

> Sometime next

> week I should get medicare to cover my doctor

> appts. My life will definitly

> be easier with

> these programs. Take care , Matt

>

>

>

>

>

> " I believe that friends are quiet angels who lift

> us to our feet when our

> wings have trouble remembering how to fly. "

>

__________________________________________________

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Matt

Your boat trip sounds great, especially when combined with the visit from the old friend! I am glad that you were able to get out for awhile. Sorry that you have not been feeling too well and still struggling with the headaches.

Keep us filled in about eye dr. appt., I hope that you do not have to have surgery, and hear good news instead.

Your thoughts about sharing living arrangements with a fellow sarc. patient is interesting. How long have you lived alone? Maybe you could find a roomate at the sarc. support group that you have gone to there in Seattle a few times. Wouldnt it be soemthing if you ended up rooming with someone from the group here?!

I hope you start feeling better soon, take it easy the next few days. I wish I could take my own advice, I am really not doing so well either and cant wait to get the next few days over with. I am really pushing it and really feeling the effects.

Take care,

Kim

NS Moderator

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