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Mixed connective tissue disease - Looking for support
Autoimmune Diseases | Last Active: Sep 26, 2018 | Replies (17)Comment receiving replies
I will be your friend! I am much older than you, but feel your frustration and sadness about this diagnosis. I hope you have some family that will start to understand and really believe you have a serious illness. My brother was a total jerk to my sister saying she was crazy and just wasn't eating enough. She lost a lot of weight over 2 months. He still thinks her disease isn't a big deal. so we don't stay in contact with him. Ok I better go.. I need to go to work tomorrow and will put on a happy face while feeling exhausted, in pain etc. If people only knew how I really feel. I used to be in such great shape..hiking all over the mountains of the west, mountain biking etc. just feeling normal and now everything is an effort.. oh well. I hope your treatment really helps you and that you can take care of yourself and your little kids. I can't imagine having that responsibility and dealing with being sick. take care.
Replies to "I will be your friend! I am much older than you, but feel your frustration and..."
@janicebengtson An interesting discussion, and it has triggered some thoughts. Well, or close. Anyway, First, "Mixed connective tissue disease" is a name that does not trigger much empathy or sympathy. It is functional, but not emotional at all. Like warmed-over Mac and Cheese. It needs a new name, like "Burnt River Tongue" or something. I don't think I have it so I do not know. Second, there is an old poem and I forget who wrote it. 'Aren't men assess who seldom make passes at girls who wear glasses?" Third, the form of Amyloidosis I have, Hereditary Gelsolin, is striking almost everyone in my immediate family. Thankfully it mostly does not hit full force before about age 80. But my brother refuses to admit the reality of it. "I am 70, and I don't have it, so I am not going to have it." I thought I did not have it, either, until I was 76. Turns out I have had it all my life, even showed signs and symptoms, but no one picked up on it from the beginning. Even fools can learn some day.
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Thank you I’m looking forward to a friendship. I’m sorry for your Brother I’m sure he will come around still. I also have family that just don’t give a flying hoot they to busy thinking about themselves and draining me more. My in laws well now that’s my real family the only bad side to it is they are in India and I’m in South Africa. We have decided that if the doctors can’t help me here I will move with the kids their for a while. I don’t know how you manage work still? I think people don’t believe us because we don’t act as sick as we feel, but we have to look the way we feel..people would run from us. Hope you have better days.