Re: thanks to all who have helped me by answering my quest...

[Guest guest]

,

Here is the link for the booklet that Rose mentioned to you. I bought a copy as well and passed it around to my family and friends. It was quite helpful in getting them to understand what we are going through. http://www.invisibledisabilities.com/lookgood.htm

Hope this helps, Luv, Debbie

se wrote:

, there is a small booklet that many of us have found helpful. It's called "But You Look Good!" It's about "invisible" disabilities and offers ways for family, friends, etc. to support us. I can't think of the website off the top of my head, but if you type in the name of the book, I think it comes up. I bought 4 or 5 of them & have given & loaned them out, including one of my doctors with the request that he have his office staff all read it. I think they are about $5. Rose

Re: thanks to all who have helped me by answering my quest...

,

Yes, we do understand -- much more than anyone in your life ... if you read back through the archives, you will see as each of us became a member, we all wrote the same note below that you just wrote!

Joan

i would like to thank all of you who have been so-kind to answer my questions about NS, it has been very help-full to me as i often feel very alone with my illness as my friends and family, while supportive, don't really seem to understand it as i don't look sick to them and they can't understand why i have good days and and days. It is nice to know that there are others who understand what i am going through.

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

, there is a small booklet that many of us have found helpful. It's called "But You Look Good!" It's about "invisible" disabilities and offers ways for family, friends, etc. to support us. I can't think of the website off the top of my head, but if you type in the name of the book, I think it comes up. I bought 4 or 5 of them & have given & loaned them out, including one of my doctors with the request that he have his office staff all read it. I think they are about $5. Rose

Re: thanks to all who have helped me by answering my quest...

,

Yes, we do understand -- much more than anyone in your life ... if you read back through the archives, you will see as each of us became a member, we all wrote the same note below that you just wrote!

Joan

i would like to thank all of you who have been so-kind to answer my questions about NS, it has been very help-full to me as i often feel very alone with my illness as my friends and family, while supportive, don't really seem to understand it as i don't look sick to them and they can't understand why i have good days and and days. It is nice to know that there are others who understand what i am going through.

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