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40 Posts
I think my mom is finally realizing that I'm not making thing up. Having something to call it helps.
I was talking to her last night and telling her about all the new info I learned on this board yesterday about fibro flares and UCTD flares, which I didn't know one could have. She again told me to quit reading stuff and looking stuff up on the internet. I told her that I really had no where else to go. These things commonly occur in families, but I'm the only one (except a sister who has fibro) so I can't go to Aunt Suzie or Cousin Ann or whatever and ask them what to expect or if stuff is normal. I told her I joined a message board and I am learning stuff every day. I also told her that I can't just stay ignorant and uninformed with this. I have to know what things I have to watch for, avoid, or do and this is the only way I'm going to do that. My dr. didn't give me anything about it.
I am an internet freak though -- when my son was being watched for Autism, I devoured everything I could on the subject and became somewhat of an "expert" on it. Then he was thought to have Asperger's Syndrome, so I did the same thing. Now me with all this, I read stuff all the time. I KNEW I had an autoimmune disease, so I read up on several of them and eliminated most of them and was left with Lupus (didn't find UCTD or didn't pay attention to it). That was the only one that really fit, but labs don't fit. Now I see that UCTD totally fits. Fibro was a big surprise to me, but that fits too I guess.
So I think she is accepting it. My sister seems to have more pain than I do with the fibro, but from our conversations, I'm very similar. Maybe I'm just starting out. I told my mom that it's different for everyone and told her to go on the internet and read about this stuff. She didn't want to do that, she said she would learn from me. I think she doesn't want to see the "bad" parts of it and knows I won't tell her those unless I absolutely have to.
I was talking to her last night and telling her about all the new info I learned on this board yesterday about fibro flares and UCTD flares, which I didn't know one could have. She again told me to quit reading stuff and looking stuff up on the internet. I told her that I really had no where else to go. These things commonly occur in families, but I'm the only one (except a sister who has fibro) so I can't go to Aunt Suzie or Cousin Ann or whatever and ask them what to expect or if stuff is normal. I told her I joined a message board and I am learning stuff every day. I also told her that I can't just stay ignorant and uninformed with this. I have to know what things I have to watch for, avoid, or do and this is the only way I'm going to do that. My dr. didn't give me anything about it.
I am an internet freak though -- when my son was being watched for Autism, I devoured everything I could on the subject and became somewhat of an "expert" on it. Then he was thought to have Asperger's Syndrome, so I did the same thing. Now me with all this, I read stuff all the time. I KNEW I had an autoimmune disease, so I read up on several of them and eliminated most of them and was left with Lupus (didn't find UCTD or didn't pay attention to it). That was the only one that really fit, but labs don't fit. Now I see that UCTD totally fits. Fibro was a big surprise to me, but that fits too I guess.
So I think she is accepting it. My sister seems to have more pain than I do with the fibro, but from our conversations, I'm very similar. Maybe I'm just starting out. I told my mom that it's different for everyone and told her to go on the internet and read about this stuff. She didn't want to do that, she said she would learn from me. I think she doesn't want to see the "bad" parts of it and knows I won't tell her those unless I absolutely have to.