Happy to find this blog.

[sgbee]

I just wanted to start out by saying that I am happy to find a group of people who share some of what I've been living with, because there are times when I feel quite alone! I have great doctors, understanding family and friends, but sometimes I feel the need to talk to someone else who has been there.

[NoWaySclero]

Think most of us feel this way. I find myself talking to my family sometimes and I just want to yell because they just dont understand. They really dont now that I been getting treatment. I sometimes say "Oh its because of sclero" and they flip it on me saying I caused some of my issues. This site has made me feel so much better because for every issue i have, someone else has it too.

[sgbee]

Yes, sometimes I think I see their eyes start to glaze over when i try to talk about my symptoms! I had some family visiting last week, whom I only see every few years, and the one person said, "So tell me what you do all day." ACK! Fortunately my husband understands that i don't do a lot in a day, but i get done what needs done.

[Mandie241 in reply to sgbee]

My husband is amazing too- which makes all the difference in the world. I have two children (5 & 9) who are in school all day.. and sometimes I feel so stupid because I didn't get anything done while they were gone. Really though- I want to spend the energy I do have playing with my kids. That's what really matters.

[AshtonRains]

Oh I feel exactly the same. My boyfriend is the worst one for listening to me - just last week he told me that talking to him about my scleroderma and cyclophosphamide treament 'tires' him and he wishes i'd stop going on about it so much.

Lovely!!

[msdeedee]

I am glad that I found this site as well. It is hard people really don't understand the diseases. It is good to talk with people who have them just someone that can relate. People look at me and say I don't see anything wrong. UGH! Well walk a day in my shoes and then say that to me. I am blesses with an understanding husband and family.

[sgbee]

When people ask me why I've "retired" so early, I say I have some funky autoimmune diseases that make it hard to work. I try not to go into details any more--I've learned that is best!! And I try to keep my humor up. BUT, some days just don't allow much smiling or joking, and that is when I appreciate my husband!! (and my little dog!)

[zenabb]

I agree with everybody. It's a great website. We must carry on with our heroic efforts to have a life and purpose. That's my philosophy. All the best to you all my scleroderma friends.

[bookworm]

i have raynauds , and glad i too have found this website.