I remember when I first visited this site nearly 2 years ago that there would be the odd post that said 'not RA related' or something along those lines. I had to laugh (not) today when I read a post entitled 'RA question'. Its really sad that it's got so bogged down with 'stuff' that you have to draw attention to the fact that your asking about RA.
Oh well. take care everyone.
It's true--I scan two pages and see maybe three threads relevant to why most people come here. Lou
Lou and Flint I can understand your concern. Things are a bit off right now and we are all feeling it. I think some of the threads that are off topic are an attempt at keeping things light and changing everyone's mood. And I don't see the harm in that.
Some of the other threads are just members sharing some of the difficulties they are experiencing right now, and asking for friendly support. Getting a boost from your cyberfriends really does help.
But we do need to remember why everyone has gathered here. Help us get back on track by starting a topic that is RA related. We need everyone's input - now more than ever.
I count 15 RA related threads on the first page. As far as I'm concerned 85% of the threads are RA related and the rest diverge a bit, so what, life isn't driven by RA, RA is part of our lives. Lots of aspects circle around RA even if they don't 'say' they are targeted.
Some people can't play nice no matter where you put them. Lets ignore them and get on with our multifaceted lives.
I have had RA all my life, was dx in 1991. I have been through all the meds but Remicade because Enbrel finally worked for me as per my blood work.
This board has always gone off topic for several reasons one very important reason is to keep our minds focused off the pain and anguish this disease has caused.
I do see your point and it has in the past discouraged me and frustrated me as well. Th eupside is that you find supportive friends that help you through the rough times that compound this disease.
If you were to go through all the post and archives, there is an immense amount of RA related information and help and suggestions for coping with this disease.
This site has so many posts that somedays you will notice that in just one day they will be flipped to page 2 so be sure to always look at more than the initial page.
WE ramble here at times, I know I ask a lot of questions that are not always RA related and it is true, perhaps I should stop doing that. Good reminder!
jode
No! Don't stop doing that. How will we get to know and support each other is this turns into just an academic discussion. We each add facets to the 'gem' of RA by our individuality. Don't turn it into a medical dictionary.I agree with Pammy. I like getting to know each of you a bit better. I want to hear about your kids, your pets, your families, your hobbies. That's when I find out how courageous each of you are trying to live your life to the fullest.
And when you start a chocolate thread, oh now that's a real treat. Or, how about a funny post that gives me a good laugh that day.
[QUOTE=pammy416] Don't turn it into a medical dictionary.[/QUOTE]
Now c'mon, you have to admit that there are some pretty silly things going on here. Someone mentioned "high school antics?" Yeh, that's it! Let's just act like adults. Oh don't stop including things about yourself! Deanna and pammy are right! We can only be a really good support system if we know about you! That way, when you're really down - for example - and your hands are just killing you....maybe we know that you have a paraffin wax bath and that your kids will help you with it, and while you're in pain you don't think of it, but we can offer it as a suggestion - because we're here to help each other! I like hearing about everyone, it's neat!
I come to this site to be with others who actually 'get' it. I live and work in the world of normals I can't keep up with and never could.You don't have to like everything about your friends...to still call them friends, and have a place in your heart for them.
I don't like meaness. I do like humor. I like to hear how your lives are going. I'll cyber hug yah when you hurt. I'll take a hug from when I hurt.
I'd hate to lose this site. It is so active! It has helped me.
I agree, I like the personal stuff. I can do without the crabby crap but otherwise, I like to hear what people are up to and about their families and pets, vacations, whatever....the better we know each other, the more we can help each other! i don't suggest for a second that we do not discuss personal things etc - there are many aspects to RA which affects us on so many levels, spiritually and emotionally as well as physically - I do believe that it is incredibly relevant to get to know one another and to discuss employment and pregnancy, holidays, children, music, books, medications - 'alternative medications too' and to be strong as a group of people to whom this place has been and should continue to be a life line in times of need. However, I have been saddened by a lot of what has gone on recently which I believe leads this board to lose credibility and I fully understand that this is down to the minority, I just feel that there are a few people who seem very 'power hungry' and have truly lost sight of why this board is here. I am sure we are all part of a club that most of us would rather not know about in the first place and the point I'm making is that if certain people here are looking to boost their 'status' or to bully, belittle or assert themselves at the expense of others then perhaps they should be looking for a different kind of board to post on - and not one that is related to offering support to people unfortunate to have to try and deal with such a horrible disease. I for one am amazed that with the number of things we could be chatting about, that certain individuals choose to express themselves in the way they do. I often think I wish a RD would bother to look at some of these sights and then they might get an insight into what RA is really like and the point I'm making is that some of the posts - and we 'the vast majority' all know what I'm taking about, really detract from the good nature of this board and I for one would be embarrassed for any RD 'or anyone else for that matter' to think that I was in any way associated with that.Understood and all are correct in that we should all feel free to express our thoughts and feelings.
Believe me, if there are Rheumatologists out there reading ( an di ma sure mine does) they are more intelligent than to think that a few represent the vast. THey have probably "heard it all" in respects to RA an dprobably many other topics.
jode
If I were to have posted ONLY about my RA, half my posts would be erased and I feel like people here would not know me as they do. I like sharing my life - I need friends for support and you make friends by sharing It seems to be that the only power hungry person here is a newbie who doesn't like the way we run things.Oh dear, I hope no one thinks thats me! I feel that people are taking what I am saying totally the wrong way - I have been posting here for 2 years. Roxy I have spent a long time chatting to you about lots of things - I've never ever had any argument or ever said a wrong thing ever on this board -ever and I've never had anything against anyone here - if anything I think there is a good chance I might not even be on this earth if it had not have been for this board in the past. As I said in my earlier post, I wouldn't suggest for a minute that we talk only about RA, i didn't mean it like that - I explained that earlier, I have just seen a few people that I care about getting grief about such silly things from a small minority and it's upsetting. I actually have tears in my eyes just now to think anyone would think I was a power hungry newbie. In the past I have stayed up round the clock - I'm from the UK, to try to support people who have being going through a hard time and have had the same done for me - I just have gotten upset to see these people being riled up by a small minority when they are clearly in pain and it's the last thing we need. I am all for happy posts and things to cheer us up I just hate the negativity because I can see from the posts how upset people get. I would be literally devastated to think that anyone thought of me like that, it never occurred to me that anyone 'ran things' here and if anything I was actually trying to stick up for you all, I'm gutted that you would feel that way about me. Don't sweat the small stuff flint! You're OKYou keep hanging around, posting and letting us know how you are doing. We are a little oversensitive because of some nastyily worded posts. But hopefully that is in the past and we can all move on.
We need people just like you. Don't you dare go away. Ah, then I would be upset. Lately, that has been my biggest fear is that people would be hurt or scared into leaving. That would be such a terrible shame because I do rely on the friendships I've made here. And even people that only post rarely mean a lot to me.
A lot of times I know that people are not posting just because they don't feel good. I get like that. It's hard to write when you are in so much pain. But I come on here and I read. Then, I know I'm not alone. Being alone in all this is the worst part of the illness.
We have to hang in there together.
Flint, no one was refering to you, trust me. :) We heart you! Oh thank you thank you thank you everyone, I get worried that I get things wrong sometimes the way I say things and then I sit and worry about it for ages afterwards - I'm a doughball 'as they say in the UK'. Love you all and I'll keep posting away - sorry for being silly.
sorry, just caught up with this. You are nowhere near being the person I was referring to.
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