Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
So I went to a new PMD today and I really liked her. My rheumy had written her a letter about me, and she believes I have Lupus too (despite the negative bloodwork). She said with my mother having Graves and things, it just makes sense. My rash is still present but getting better, she said the Plaquenil must be working.
I have had a very hard time talking to other people about my diagnosis. Everyone responds differently, and the ones that really bother me are the ones who now seem overly concerned (who never really cared before). I didn't want to tell anyone about it, but I had to tell some people, and then the rumors got out.
I was heartbroken because I play the piano some for church. Last week, after practicing, my fingers were in so much pain afterward and my knuckles all swelled up. I was embarrassed to let people down, so my husband went to church and talked to people for me. I got a phone call from one lady (still haven't called her back) crying on my voicemail saying "I can't believe this is happening to you, you are so young." It really really bothered me. I don't think I can call her back for awhile. I don't know how to face people like that. I mean, it's bad, but I'm not dying right now--and I know many others worst off. I'm grateful for friends, but I just don't like the weirdness. Do any of you have experiences like this and how did you manage?
I just want to say I am so grateful to be part of this group and that the internet exists! It's nice to know I can go to a place where people understand.
Sheila
I have had a very hard time talking to other people about my diagnosis. Everyone responds differently, and the ones that really bother me are the ones who now seem overly concerned (who never really cared before). I didn't want to tell anyone about it, but I had to tell some people, and then the rumors got out.
I was heartbroken because I play the piano some for church. Last week, after practicing, my fingers were in so much pain afterward and my knuckles all swelled up. I was embarrassed to let people down, so my husband went to church and talked to people for me. I got a phone call from one lady (still haven't called her back) crying on my voicemail saying "I can't believe this is happening to you, you are so young." It really really bothered me. I don't think I can call her back for awhile. I don't know how to face people like that. I mean, it's bad, but I'm not dying right now--and I know many others worst off. I'm grateful for friends, but I just don't like the weirdness. Do any of you have experiences like this and how did you manage?
I just want to say I am so grateful to be part of this group and that the internet exists! It's nice to know I can go to a place where people understand.
Sheila
You hit the nail on the head with your two reactions...and yes I feel exactly the same way. I want people to understand how frustrating it is, but to also know that just because I can put a name to it, doesn't mean I'm a different person than I was on August 8th.
The Plaquenil made me really sick at first (I posted before under "Just Diagnosed"). If you take it, always take it with food and eat small snacks throughout the day. Take your night dose with some milk or yogurt right before bed. That has worked for me. I am tolerating it much better now. My rheumy said the Plaquenil has the fewest side effects of any Lupus med, so I am trying to make it work. It takes up to 6 weeks to see if it will work, and I can say I am noticing me rash improve slowly. I read your blog (well your friend's and yours)..I really liked it.
Anyhow, welcome! I'm new here as well! :)
Sheila