Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hi Tanja -- Welcome to the group!! My name is Patti and I have Vascular EDS and have been a member for about 6 months now. As others have already told you, this is a fantastic group - the people here are more than willing to help wherever they can. It doesn't look like I'll make the conference this year either (gonna miss out on the tattoo-ing -- I've always wanted one!!!), but if there is anything I can do for you, just let me know (on or off list). Take care and I hope you are well. Patti Introducing myself Hi every one My name is Tanja Nedergaard, I have been in this group now for about 2 weeks. --------------------------------- Post your free ad now! Yahoo! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 I've been lucky, too. My boss is a breast cancer survivor and a recovering alcoholic; she's also a former nurse, and she's been very understanding. I've been lucky with my co-workers' acceptance of my disease, but I've been careful about how much I let them know. I don't feel comfortable letting them know about the pain medication I take. Since I've had chronic problems for years, I've developed a high tolerance for pain meds. My PSC is a novelty to most of my coworkers; I don't think they, or most of my family members, recognize the seriousness of the disease. But my doctor agrees that there's a clear stigma against those of us that have to take regular high dose pain medication just to get out of bed in the morning - and it's best that we keep pain management to ourselves. Debbie in Seattle PSC stage 2, Diagnosed 1999 > > Hello Everyone, > > I just wanted to introduce myself and was hoping to get some > suggestions. I am a 30 yr old student in Chicago. I just got diagnosed > with PSC. I was diagnosed with UC middle of last year. Wife and I are > going to Mayo to see Dr Lindor to seek a second opinion. Not that we > think he will say that I have been misdiagnosed but just to see what he > has to say about management and prognosis. > > > * This has come as quite a shock to me - from feeling perfectly > healthy to being told that I have a progressive condition. How did you > guys manage the psychological aspects? I have been feeling very down - > probably depressed. Wife is handling it much better and has been trying > to cheer me up. I know whatever the outcome, feeling depressed is not > the right thing to do. > > * The other thing I wanted opinions about is how should I break this > to my parents. I haven't told them about this yet. They are in India, > already freaked out about my UC. > > Thanks for all the help. You have been a great source of information for > us. Hope the researchers can find an effective treatment for this soon. > > Puneet > 30 yrs, UC dx 2006, PSC dx 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 I've been lucky, too. My boss is a breast cancer survivor and a recovering alcoholic; she's also a former nurse, and she's been very understanding. I've been lucky with my co-workers' acceptance of my disease, but I've been careful about how much I let them know. I don't feel comfortable letting them know about the pain medication I take. Since I've had chronic problems for years, I've developed a high tolerance for pain meds. My PSC is a novelty to most of my coworkers; I don't think they, or most of my family members, recognize the seriousness of the disease. But my doctor agrees that there's a clear stigma against those of us that have to take regular high dose pain medication just to get out of bed in the morning - and it's best that we keep pain management to ourselves. Debbie in Seattle PSC stage 2, Diagnosed 1999 > > Hello Everyone, > > I just wanted to introduce myself and was hoping to get some > suggestions. I am a 30 yr old student in Chicago. I just got diagnosed > with PSC. I was diagnosed with UC middle of last year. Wife and I are > going to Mayo to see Dr Lindor to seek a second opinion. Not that we > think he will say that I have been misdiagnosed but just to see what he > has to say about management and prognosis. > > > * This has come as quite a shock to me - from feeling perfectly > healthy to being told that I have a progressive condition. How did you > guys manage the psychological aspects? I have been feeling very down - > probably depressed. Wife is handling it much better and has been trying > to cheer me up. I know whatever the outcome, feeling depressed is not > the right thing to do. > > * The other thing I wanted opinions about is how should I break this > to my parents. I haven't told them about this yet. They are in India, > already freaked out about my UC. > > Thanks for all the help. You have been a great source of information for > us. Hope the researchers can find an effective treatment for this soon. > > Puneet > 30 yrs, UC dx 2006, PSC dx 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 I've been lucky, too. My boss is a breast cancer survivor and a recovering alcoholic; she's also a former nurse, and she's been very understanding. I've been lucky with my co-workers' acceptance of my disease, but I've been careful about how much I let them know. I don't feel comfortable letting them know about the pain medication I take. Since I've had chronic problems for years, I've developed a high tolerance for pain meds. My PSC is a novelty to most of my coworkers; I don't think they, or most of my family members, recognize the seriousness of the disease. But my doctor agrees that there's a clear stigma against those of us that have to take regular high dose pain medication just to get out of bed in the morning - and it's best that we keep pain management to ourselves. Debbie in Seattle PSC stage 2, Diagnosed 1999 > > Hello Everyone, > > I just wanted to introduce myself and was hoping to get some > suggestions. I am a 30 yr old student in Chicago. I just got diagnosed > with PSC. I was diagnosed with UC middle of last year. Wife and I are > going to Mayo to see Dr Lindor to seek a second opinion. Not that we > think he will say that I have been misdiagnosed but just to see what he > has to say about management and prognosis. > > > * This has come as quite a shock to me - from feeling perfectly > healthy to being told that I have a progressive condition. How did you > guys manage the psychological aspects? I have been feeling very down - > probably depressed. Wife is handling it much better and has been trying > to cheer me up. I know whatever the outcome, feeling depressed is not > the right thing to do. > > * The other thing I wanted opinions about is how should I break this > to my parents. I haven't told them about this yet. They are in India, > already freaked out about my UC. > > Thanks for all the help. You have been a great source of information for > us. Hope the researchers can find an effective treatment for this soon. > > Puneet > 30 yrs, UC dx 2006, PSC dx 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 I've been lucky, too. My boss is a breast cancer survivor and a recovering alcoholic; she's also a former nurse, and she's been very understanding. I've been lucky with my co-workers' acceptance of my disease, but I've been careful about how much I let them know. I don't feel comfortable letting them know about the pain medication I take. Since I've had chronic problems for years, I've developed a high tolerance for pain meds. My PSC is a novelty to most of my coworkers; I don't think they, or most of my family members, recognize the seriousness of the disease. But my doctor agrees that there's a clear stigma against those of us that have to take regular high dose pain medication just to get out of bed in the morning - and it's best that we keep pain management to ourselves. Debbie in Seattle PSC stage 2, Diagnosed 1999 > > Hello Everyone, > > I just wanted to introduce myself and was hoping to get some > suggestions. I am a 30 yr old student in Chicago. I just got diagnosed > with PSC. I was diagnosed with UC middle of last year. Wife and I are > going to Mayo to see Dr Lindor to seek a second opinion. Not that we > think he will say that I have been misdiagnosed but just to see what he > has to say about management and prognosis. > > > * This has come as quite a shock to me - from feeling perfectly > healthy to being told that I have a progressive condition. How did you > guys manage the psychological aspects? I have been feeling very down - > probably depressed. Wife is handling it much better and has been trying > to cheer me up. I know whatever the outcome, feeling depressed is not > the right thing to do. > > * The other thing I wanted opinions about is how should I break this > to my parents. I haven't told them about this yet. They are in India, > already freaked out about my UC. > > Thanks for all the help. You have been a great source of information for > us. Hope the researchers can find an effective treatment for this soon. > > Puneet > 30 yrs, UC dx 2006, PSC dx 2007 > Quote Link to comment Share on other sites More sharing options...
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