Lupus Support Group

I've been thinking lately, and please don't take this wrong. It's meant for words of encouragement. I know we all feel bad and at times we would rather read then "start a discussion" or "comment" on a post.

Well, looking at the home page and seeing that on average 40 people are reading each post, wouldn't it be nice if those 40 people made a brief comment of encouragement? If we are going to read them, we might as well say at least, "thinking of you" while we are there. Think how nice it would feel to get that much support..I think it's kinda sad when there is a post with 3 comments and 45 people have read it.

I hope this does not come acrossed rude. For I am guilty also. There are times I don't know how to respond. I think I may just have to type that..."I don't know how to respond to this post, but I sure am thinking of you"....

Just sayin... Lynnette

I try to answer as many as I can when I can I am guilty too though of not being as interactive. Sometimes, I will read a post and have to think about it for awhile, like the best way to respond, before I type my reply. Then I am going way back looking for discussions that were days ago...

I am thinking of you. Glad all went well today ~ Julie

Lynnette...I am also guilty of that....there are days when I get on here but my thought process isn't clear and I have a hard time trying to answer a post....the words just come out all jumbled so than instead of saying something like "thinking of you" I just click off. Thanks for bringing this up....have a good day.

Eva

I also have to stop and think before posting. And if it is a long post...I just can't follow it well. I will try to do better.

Alison

So glad you brought this up. I am with everyone, and as guilty. There are times when I really don't know what to say, so I don't. But I have seen others post that while they don't have experience with the topic or don't know what to say, they are sure that others in the group will. That always comes across as so thoughtful to me. And it seems to encourage others to post, which is helpful. I will keep this discussion in mind the next time I can't think of anything to say. Thanks for bringing it up.

I am guilty of writing some terribly long posts. Your comment Lynnette, and yours Alison, gives me food for thought. Sometimes it's hard to find time to fit the group in in between what I need to do to keep up with life while also getting sick and recovering from flares. When I have a chance to post, I feel like I haven't had a chance to connect with anyone who can relate and end up getting carried away. As a result, few respond to my posts, and I do have to admit that there are times when it makes me feel left out from the group in general. I hope that when I do post I'm not offending anyone in any way.

Hope

Don't stop writing long post Hope, I know it helps to get things out. Not everyone has the time to check in daily, and I understand that. Just remember that some of of us have problems following it. I try, it may take 3 or 4 times of reading to make sense, but that is my problem, not yours.

Alison

I totally get having to write long posts. And I wouldn't stop doing them either, Hope. Something else that helps me is keeping the diary. My 'posts' are usually much longer in the diary, and it helps to get everything out. And sometimes people even post comments on the entries, like they do here.

Hi Lynnette

I know I do the same thing,I just can't come up with the words like most of you and so I don't put anything but because of you I will try harder and at least put (God Bless and hugs)

Lawana

hi Lynette

as I read these posts I think of each of you. as I see all the possible side effects I become more fearful... sometimes knowledge is a good thing. but I need to keep reading so I can learn to ask the right questions and be a good advocate for myself. I am guilty as a nurse of at times thinking, those who are offering me complaints of pain and general malaise that do not make sense, as someone who is looking for attention or is drug seeking. after my experience over the last few months and weeks with increased pain, exhaustion and feeling completely incapable of doing my job due to difficulty with concentration. I have come to an whole different place with my clients. thanks to all of you who are willing to write your experiences as that will help shape mine. I hope that I can be a better listener now when people come to see me. Kathy