Hi everyone. I am new here. I was diagonsised about four years ago with Mixed Connective Tissue Disease/ SLE dominate. I worked until the Lupus damaged my lungs and I now use oxygen. I found this site quite by accident, but God leads us to where we need to be. My boyfriend is my rock! He is so supportive and caring, as is my daughter and son-in-law. My grandchildren call the flare-ups my "tired days". As for the rest of my family, they either avoid me for fear of "catching it" or are in perment denial. Everyday is a present and a day to cherish. Has anyone out there been diagonised with MCTD and Lupus?
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Hello and welcome 
I'm sorry to hear that you had to give up work and especially that your lungs have been affected to that extent but it's great to hear that you have good family support.
I don't know about people diagnosed with lupus and MCTD. My understadning is that one of the components of MCTD is lupus and therefore if one has MCTD one would always have a lupus component....are you still following - I've lost myself there :lol:
I have lupus which over time my rheumy has also called MCTD though she says that really it's mainly lupus and polymyositis. I'm not really bothered what they call it as the treatment doesn't change anyway.
I hope you enjoy being here. The people are great especially when we need a bit of support.
Katharine
I'm sorry to hear that you had to give up work and especially that your lungs have been affected to that extent but it's great to hear that you have good family support.
I don't know about people diagnosed with lupus and MCTD. My understadning is that one of the components of MCTD is lupus and therefore if one has MCTD one would always have a lupus component....are you still following - I've lost myself there :lol:
I have lupus which over time my rheumy has also called MCTD though she says that really it's mainly lupus and polymyositis. I'm not really bothered what they call it as the treatment doesn't change anyway.
I hope you enjoy being here. The people are great especially when we need a bit of support.
Katharine
Joined
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41 Posts
Welcome Chevy Girl
I like your name...I am also pretty new here, just started getting back on line the other day, because I have been so sick, and of course confused. Every few months I go to the Rhuemy, and he say's " I think you have mixed connective tissue disease, at first he thought, Lupus, now he thinks the Mixed Disease. He has not officially said I have it, and it frustrates me. I came to this site, very overwhelmed with alot of questions, I am still confused, but I got most of my help here. At least the one's who could tolerate me. Maybe you can help me, figure out what too do next, I am so sick, and no one believes me, but people on this site. I am not taking any of the meds the docs give me, because I am so confused, and not diagnosed. Sorry to keep talking about myself, that is just the anxiety, and depression kicking in...I used to be so supportive, I was the rock in the family but now I think I come here for my own help, eventually I want to be the supportive one on this site. I like the way you look at life, not many people understand how you feel, or any of us feel. My heart goes out to you and your family, and like you that God that I have my husband too support me. Take care, and I hope too talk to you soon.
Connie
I like your name...I am also pretty new here, just started getting back on line the other day, because I have been so sick, and of course confused. Every few months I go to the Rhuemy, and he say's " I think you have mixed connective tissue disease, at first he thought, Lupus, now he thinks the Mixed Disease. He has not officially said I have it, and it frustrates me. I came to this site, very overwhelmed with alot of questions, I am still confused, but I got most of my help here. At least the one's who could tolerate me. Maybe you can help me, figure out what too do next, I am so sick, and no one believes me, but people on this site. I am not taking any of the meds the docs give me, because I am so confused, and not diagnosed. Sorry to keep talking about myself, that is just the anxiety, and depression kicking in...I used to be so supportive, I was the rock in the family but now I think I come here for my own help, eventually I want to be the supportive one on this site. I like the way you look at life, not many people understand how you feel, or any of us feel. My heart goes out to you and your family, and like you that God that I have my husband too support me. Take care, and I hope too talk to you soon.
Connie
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