Please some ideas to help explain what i have

[Guest guest]

I Hve been talking to my minister about my disease. For some reason

several people had told her i had a brain tumer. I just had a recent

relapse because the insurance company took away my remicade. But a

brain tumor is not what i have. You are all experts because we live

with this every day. It was easy to talk to my kids. I told them that

i would be sick and cranky some times and that some times i would not

be able to work. But mainly i would still love them and be the best mom

I could and their dad would be the same. He gets cranky some times too.

I just realised after this relapse that i am pretty angry. I think i am

so angry because i finally found some thing that worked, and i cound

work and was prety well and they took it away. Now my life has sort of

stopped and is on hold, i am sick and angry. Anyway... i didn't ask you

to listen to me complain. I am off of my soapbox. But i would

appreciate any help that you can give me with this... i feel like the

more i try to explain it to her the more confused i make her.

huggs to every one

karen

[Guest guest]

I Hve been talking to my minister about my disease. For some reason

several people had told her i had a brain tumer. I just had a recent

relapse because the insurance company took away my remicade. But a

brain tumor is not what i have. You are all experts because we live

with this every day. It was easy to talk to my kids. I told them that

i would be sick and cranky some times and that some times i would not

be able to work. But mainly i would still love them and be the best mom

I could and their dad would be the same. He gets cranky some times too.

I just realised after this relapse that i am pretty angry. I think i am

so angry because i finally found some thing that worked, and i cound

work and was prety well and they took it away. Now my life has sort of

stopped and is on hold, i am sick and angry. Anyway... i didn't ask you

to listen to me complain. I am off of my soapbox. But i would

appreciate any help that you can give me with this... i feel like the

more i try to explain it to her the more confused i make her.

huggs to every one

karen

[Guest guest]

,

FSR--Foundation for Sarcoidosis Research www.stopsarcoidosis.org has a wonderful

pamplet you can order. The first one is free, and it's mimina for extras. They

actually took alot of what we've used here to explain this disease and put it in

a brochure. In our ARCHIVES we also have alot of posts that explain NS-- feel

free to print out what will help.

Why is it that your insurance stopped the Remicade?? If it's a cost thing,

maybe they'll allow you Humira or Enbrel instead. They are both TNF blockers,

but are not as selective as the Remicade, so they do blow out a bit more of the

immune system, where Remicade targets a specific TNF-a.

Will your MD's write a letter explaining that you were doing so much better on

the Remicade, and need to be treatment needs to be reinstated as to take you off

it, puts you at higher risk of this disease progressing even farther.

Also, if you wish, you can have your pastor come over to the group site and she

can educate herself-- we do support for our " caregivers " also...

Sincerrely,

Tracie

NS Co-owner/moderator

Please some ideas to help explain what i have

I Hve been talking to my minister about my disease. For some reason

several people had told her i had a brain tumer. I just had a recent

relapse because the insurance company took away my remicade. But a

brain tumor is not what i have. You are all experts because we live

with this every day. It was easy to talk to my kids. I told them that

i would be sick and cranky some times and that some times i would not

be able to work. But mainly i would still love them and be the best mom

I could and their dad would be the same. He gets cranky some times too.

I just realised after this relapse that i am pretty angry. I think i am

so angry because i finally found some thing that worked, and i cound

work and was prety well and they took it away. Now my life has sort of

stopped and is on hold, i am sick and angry. Anyway... i didn't ask you

to listen to me complain. I am off of my soapbox. But i would

appreciate any help that you can give me with this... i feel like the

more i try to explain it to her the more confused i make her.

huggs to every one

karen

------------------------------------

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.emxpc.net/chat/index.php

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]

,

FSR--Foundation for Sarcoidosis Research www.stopsarcoidosis.org has a wonderful

pamplet you can order. The first one is free, and it's mimina for extras. They

actually took alot of what we've used here to explain this disease and put it in

a brochure. In our ARCHIVES we also have alot of posts that explain NS-- feel

free to print out what will help.

Why is it that your insurance stopped the Remicade?? If it's a cost thing,

maybe they'll allow you Humira or Enbrel instead. They are both TNF blockers,

but are not as selective as the Remicade, so they do blow out a bit more of the

immune system, where Remicade targets a specific TNF-a.

Will your MD's write a letter explaining that you were doing so much better on

the Remicade, and need to be treatment needs to be reinstated as to take you off

it, puts you at higher risk of this disease progressing even farther.

Also, if you wish, you can have your pastor come over to the group site and she

can educate herself-- we do support for our " caregivers " also...

Sincerrely,

Tracie

NS Co-owner/moderator

Please some ideas to help explain what i have

I Hve been talking to my minister about my disease. For some reason

several people had told her i had a brain tumer. I just had a recent

relapse because the insurance company took away my remicade. But a

brain tumor is not what i have. You are all experts because we live

with this every day. It was easy to talk to my kids. I told them that

i would be sick and cranky some times and that some times i would not

be able to work. But mainly i would still love them and be the best mom

I could and their dad would be the same. He gets cranky some times too.

I just realised after this relapse that i am pretty angry. I think i am

so angry because i finally found some thing that worked, and i cound

work and was prety well and they took it away. Now my life has sort of

stopped and is on hold, i am sick and angry. Anyway... i didn't ask you

to listen to me complain. I am off of my soapbox. But i would

appreciate any help that you can give me with this... i feel like the

more i try to explain it to her the more confused i make her.

huggs to every one

karen

------------------------------------

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.emxpc.net/chat/index.php

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