How can we keep this as a meaningful blog site?

I don't contribute comments very often, but really appreciated the real blogs on this site - much more relevant to me than meaningless celeb gossip in the papers etc. So getting v sad that people like Julie 55 and LynW have stopped blogging (see comment on Taro's blog) as I don't want this to become just occasional thoughts or just questions although those good as an add-on. It's the blogs that make it different from NRAS site, and that are the real attraction for me. Can blogs be sustained, or is it just too optimistic to think such as mixed group of people with maybe not much in common outside RA can respect each other and share very personal stories? I was horrified that Julie55 said she had negative comments by private messages - that's like bullying behind the bike sheds. Polly

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  • ...well I'm for one feeling very sad about all this business started off by certain blogs advertising or promoting. When my husband first found this site (only a few months ago) it was such a different place. It was not just me that received such a wonderful amount of support it was both of us. Within just the last month I've noticed more and more of the original members, that responded to us, either seem to be around less and less or not at all.

    It is only now looking back that I can admit that at the time of joining I had not only been through a terrible period of pain but I actually felt that I could not and did not want to carry on any more. It was the loving support and kindness that I got from initial replies that made me understand that I was not alone and that, although I may well go through more times like that, I would also have times when it would actually be ok and I would be able to live a normalish life. I have received medical and emotional support and to see that this now disintegrating is a real shame and a waste. This site has literally saved my life and I'm not being a drama queen saying that. All I can say is whatever happened to "if you've not got anything nice to say then don't say it all" We are all allowed an opinion it's called freedom of speech.

    Mel :(

  • if you dont have any thing nice to say is another good point. I was bought up with those values also.

  • All I know is that this place is my haven and most have made me feel welcome, comfortable and really supported. Hope this continues and the advice and friendships still come through too much in this world gets ruined from people thinking they are above others and undermining them. Summer I hope you continue to give us all advice I know your really helped me since I've joined. :-)

    Marnie x

  • I just read through the blog in question, and think maybe we should just let this go. Very surprised that Julie was hanging up her mouse? I for one will miss her, though hoping she was just tired of it ,and will come back to the fold soon.

    I agree if you don't have some thing nice to say don't say anything. I too was reared with this. Some people sound quite angry and frustrated, and maybe that is acceptable, given that we live with quite a lot of pain and lack of understanding.

    We come from all walks of life and obviously different backgrounds, I am even in a different country! I have always felt welcome and all very supportive here.

    It would be a shame if the founder mothers abandoned all the good work done here.

  • yes julies blogs were funny and well written.. x

  • Hey guys I'm off too. I think you are a very courageous bunch and wish all very well. I feel guilty about Julie going somehow because I am aware that I haven't been diagnosed and am currently more in lull or perhaps it wasn't actually RA but menopause. I hope I haven't been an unwitting prompt to the whole debate about diet and excercise v drugs because if I was diagnosed then I would definitely do what I was advised by my consultant. RA is far too serious and destructive to muck about with it seems to me and there has to be room for both.

    Julie has been a godsend for me as she bridged that gap between people whose physical suffering was so great and those like me who were just in shock at this sudden pain experience and conflicting medical advice being given and needed suggestions and experiences of people with RA to help them through until diagnosis.

    Members such as Marnie who are really young or Mads having to cope with so much pain and suffering or trouble in the work place - and others such as Lyn, Mand, Gina and Alison who have been here since HU started have such a need of this site or can contribute so much to those who need help that I feel it's wrong for someone like me to hang around any more. If I do end up having RA I'll probably be back for advice from all you wise and wonderful ones. But meanwhile please assume I'm one of the rare lucky ones and take care and best of luck to you all with treatment, home lives, working environments etc.

    Williby, Polly and Cathie - my new Scottish friends - please don't hesitate to get in touch if you are coming up to Orkney for a holiday etc. It would be good to meet you and hear how you are all doing. My email address is matilda.tumim@btinternet.com (and Julie please get in touch if you read this and feel like making contact - you've been an inspiration to me!). I do you hope you might reconsider leaving HU as you have been so popular and loved here.

    Bye for now,

    Tilda xx

  • very very sad that julie has decided to leave the blogging, she was a very talented blogger loved hearing about life on the farm, she has been a great support to me as well as good fun. Feel like Tilda above.

  • Omg!

    I'VE not seen the blog in question but Julies blogs keep me smiling when I feel like crying!

    Hope Julie comes back x x

  • i've put an answer to this problem, i didn't mention julie by name though. I second all what has been said here. I've said on here that i believe in god and spiritalism, but i've never once tried to change anyones mind and i feel the way julie has been treated ia bloody awful, sorry for swearing, but i have enjoyed her blogs and she has been very supportive with me.

    Would someone from nras please get in contact with her and let her know she has so much support on here. Bring back julie i say.

    I support everything said on here.

    Sylvia.

  • I agree with everything which has been said on this and other blogs. I think it is time to move on and to celebrate what we mean to each other, the help we receive when we are feeling ill and in pain, the friendship expressed in so many ways. I am also very said that Julie55 has decided not to continue - I shall miss her cheerfulness and her funny stories.

    Tilda, please do keep in touch with us - it doesn't matter whether you are diagnosed yet or not. Any support we can give, will be given willingly whilst you wait to hear what is wrong.

    I did not know that LynW has also given up, That is a great shame.

    In the time I have been on the site for the last few months, I have learnt a lot from other people's blogs and felt comforted that I am not the only one going through the problems with RA.

    I do hope they will re consider and come back onto the site again. I agree witj Sylvi, perhaps NRAS can help. LavendarLady x

  • This is all so sad but as LavendarLady has just said it is now time to move on and appreciate what we have. I loved Julie55's blogs, they were so uplifting. Whoever has caused so much distress to such lovely people must surely be feeling very remorseful and we can only hope this doesn't happen again.

    We need each other's support now as we have enough to deal with with our RA.

    Lets hope it's not too long before Julie55 and LynW are back with us.

    Sue xx

  • Whats going on? Has someone upset Lyn and Julie and if so why?

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