Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 HI Royce, welcome to the family. We wish you didn't need to be adopted into the group, but hey-- we're here! So many of us have lived with NS and systemic sarcoidosis for - forever-- and it is helpful to know that there are others in the same boat. The group is a bit quiet right now-- but it doesn't stay that way for long. All of the moderators and owners have sarc also-- and we are all in flares right now. Not a good thing.... I've had pulm sarc for 18 yrs now, and it went systemic 7 yrs ago. The triple whammie of Plaquenil, Methotrexate and Remicade has kept me going. Right now I'm fighting a respiratory infection that went just short of pneumonia-- so I'm on hit and miss with the group-- but around here-- we tag team-- so if you have questions, concerns, ideas-- share and we will get back to you. I know it is hard to exercise patience when you are the patient!.. Our ARCHIVES and LINKS section has gazillions of articles and research that we've put together for you to print out and share with your docs-- and family. The address is at the bottom section of this and each email from the group--so scroll down and browse! It's good stuff. Again, welcome to the family, and we'll be talking, Tracie NS Co-owner/moderator sarc i wouldn't wish this on my worst enemy. i suffered for 7 years before i found out what i have. it's a blessing to locate others who know what i'm dealing with. i especially hate when poeple say "but you look so healthy. this is one case where lokks are deceiving. oh! i have neurosarcoidosis. loking forward to talking with you soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 Welcome Royce, You have come to the right place - lots of support and answers. Debbie Co-moderator Subject: sarcTo: Neurosarcoidosis Date: Saturday, August 23, 2008, 8:17 AM i wouldn't wish this on my worst enemy. i suffered for 7 years before i found out what i have. it's a blessing to locate others who know what i'm dealing with. i especially hate when poeple say "but you look so healthy. this is one case where lokks are deceiving. oh! i have neurosarcoidosis. loking forward to talking with you soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 I know what you mean, I had to go to a friends fathers funeral in Calif. and needed a wheelchair to get from desk to gate and gate to baggie claim, and just one man said, what's wrong with you, I tired to explain it, but then he said wow you'd never know as you look so good, I said Ya! Marla i wouldn't wish this on my worst enemy. i suffered for 7 years before i found out what i have. it's a blessing to locate others who know what i'm dealing with. i especially hate when poeple say " but you look so healthy. this is one case where lokks are deceiving. oh! i have neurosarcoidosis. loking forward to talking with you soon. -- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 oops I forgot to say welcome, you have found a family of NS, great people, with big hearts. blessings, Marla i wouldn't wish this on my worst enemy. i suffered for 7 years before i found out what i have. it's a blessing to locate others who know what i'm dealing with. i especially hate when poeple say " but you look so healthy. this is one case where lokks are deceiving. oh! i have neurosarcoidosis. loking forward to talking with you soon. -- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 I felt very self-concious during my vacation this year. We went to Sherburne Museum in VT & its a lot of diff. bldgs and lot of walking. Halfway thru I was slowing down and I knew I couldn't complete the walk around. My husband went & got me a wheelchair and my son pushed me around. People who we had seen before while I was walking , now seeing me in the wheelchair, eyed me funny like I was faking or something cause on the outside I looked ok. Maybe I was being paranoid, but it made me feel uncomfortable for the rest of the visit. I think that even in places like Walmart or Kohls, if they see a fairly young person in a wheelchair looking ok on the outside, they must wonder what's wrong with us especially if they see you walking in the first place. I don't know ......maybe it's just me and I am very self-concious. Oh well..... Hope everyone has a good day.. Debbie Co-Moderator i wouldn't wish this on my worst enemy. i suffered for 7 years before i found out what i have. it's a blessing to locate others who know what i'm dealing with. i especially hate when poeple say "but you look so healthy. this is one case where lokks are deceiving. oh! i have neurosarcoidosis. loking forward to talking with you soon.-- Marla Bramer Independent Beauty Consultant Kaymbramer (AT) marykay (DOT) com www.marykay. com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.