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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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As you may have seen from other posts there is some confusion over the location of forum services. The members on this site enjoy a cosy if limited chat, due to be relatively low numbers - we all know each other well but there is a certain lack of diversity. The small size of the community may actually attract some people. Meanwhile, over on the Health Unlocked site there is a larger community in a separate forum which is actually linked to from the NRAS site. However, what that site gains in member numbers may be offset by the fact that it is not exclusively related to rheumatoid arthritis, and it is a global site so discussions of health services in a particular country may be largely irrelevant to many users. This is a completely unofficial poll but I thought it would be useful for an NRAS to know the members' views. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hi Paul
I agree with you. I am very wary of where I post but maybe naively
feel confident here
Anne
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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I like posting here - and enjoy the friendliness of everyone. ... but I rarely post on the Health Unlocked site... and only with an answer - I would never initiate a discussion on there.
Anne
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Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Hi Paul and the two Annes ;) Health Unlocked is just another patient related blogging site (similar to "Patient's like me " ) that NRAS have chosen to have a facility on , some of which is for members. I am a firm believer that information , in general should not have to be paid for , and that is the reason funnily enough that I joined NRAS as a member .There is so much information on the site , for free that I felt compelled to contribute. The forum was an added bonus , as it is my preferred way of interaction. I do like the smaller community of hardcore members (hehe) and note that there are actually 2426 members signed to the forum , and only a few participate. When I first joined i looked at all the posts and digested peoples stories before i even said hello, and I think a fair number of members get enough out of the experience just by reading. I also tried the free (and open) arthritis care forum and found that not to be my liking . I did try the Health Unlocked forum and am a member . I like the fact that there are some RA posts that anyone can read without signing in and others that people can chose.I hate the fact you cannot edit posts on there ( unless that has changed). So ... it's horses for courses as far as i am concerned. RA has already taken a major part of my life , so I tend to dip in when I feel like it , or if someone has an question I can answer. Rich "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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I joined the forum a few years ago now, when there were lots of posters, most of whom popped in every day. We all got to know each other so well over the years that meet-ups were arranged and took place, usually in a central part of the country, eg Leicester, to facilitate travel from various directions. Most of us in this group of people are also in touch via e-mail. Unfortunately, some time ago there was an "upset" on this forum, and most people left, and formed a group on Facebook. Of this crowd, there is hardly anyone remaining on here - apart from myself, Paula, who still posts occasionally, Fiona, and Rich, who has been here a while too, helping us out with his knowledge of benefits issues. The forum itself is a pale shadow of its former self, so most of us use the Facebook facility. Personally, I`m not a fan of Facebook, though our group is private, and I never post on Health Unlocked though I am a member. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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i would only use this Forum.
but as Kathleen said we had a mass exodus a while ago now .. i was here as well then, although i never went to any meet up's.
i won't join Health Unlocked as i have said before, i have used an open forum with my weight loss as i stated a while back and now i realise it was there for all to see. fortunately that forum has since closed.
when i first joined we had a very lively forum, at first if i am being honest i was quite scared because of reading of all the different problems that people had, but now i realise that we are all individual with RA and what happens to one doesn't happen to all.
we had raffles of which i won one, and also had great threads of fun.
sadly it seems we won't go back to that now, but i do try and post daily, although my knowledge is quite limited as i have had a fairly straightforward journey with my RA thankfully, but i do feel i do know more or less everyone.
so i shall just plod on and post as and when i feel i can. i think i would feel disloyal leaving NRAS as they did help me a lot in my early very frightened days.
Suzanne
P.S. Rich and i joined about the same time. and i do often wonder how some Members doing are now.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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This forum was my lifeline when I was first diagnosed and I still log in most days but do not post as much. I try and help in offering advice and assistance to new members as I remember what it was like in those first dark days.
I am a member of the Facebook site but I have stopped posting because again there was another upset and I feel members are scared to say what they want.
I know that I will get sensible and unbiased advice on this forum and I will continue to support NRAS for all the hard work they do for us.
Jackie
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello ALL
I hope all who remember me are well. I too joined on 2010 and I was on long term sick and was going
though a bad time, like Suzanne, I found this site and forum Brilliant I would also feel a traitor if I left here.
Hi Suzanne how are you ? we were close and sorry to have lost touch. How you Rich, Dorothy, Kathleen
Jackie and sorry for names I have forgotten.
I do not use Health care unlocked. Too much for me. I tune in here probably 2/3 times a month bit tend
to read rather than comment. I will try and comment more and input more.
I am struggling along with RA and also Fibro and have had another long spell of work, although I am only
working part time.
Love Rose x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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Rose Rose Rose!!
lovely to hear from you, i often wonder how you are .. and i would like to say what a great help you was to me in the early days.
really sorry to hear you are still struggling with your RA, and also Fibro .. i think you are a real trooper to still be working as i know how much of a battle it's been for you.
i was awake early, well hardly any sleep ... but i did go and see Jools Holland and his Band last night and they were absolutely fantastic!! to see the calibre of great musician's all together and also he had about 4 guest singers, would recommend anyone go and see them if you can.
to me that's what this forum should be about, getting to know people and feel comfortable posting,
Suzanne
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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It's nice to hear from a few friendly faces I haven't heard from for a while. I have so appreciated all the advice and help in my early days with RA and for my daughter who is now 24 years old... can't believe it. She in St Andrew's uni in Scotland doing a PhD - but her RA is still not quite under control with her joints seizing up randomly!! I am just going through ill-health retirement as I can't do the job - which we all agree on! I am also on the facebook group; although with facebook you never know how secure things are... so I am careful what I post there. This forum feels much safer. Big hug to everyone  Anne xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hello EVERYONE! I joined May 2012 I thought about arthritis care to join, but decided that NRAS was more in tune with my ra. I'm boring, never done Facebook.....joined twitter last year! And have banter with the kind people fron NRAS and other people with ra. The health unlocked forum isn't something i have wanted to join/look into - NRAS is enough for me. This is a members forum and not in the big wide world! I have never encountered rudeness, or nasty behaviour on here. I guess I'm a bubbly happy person that sees the good in everyone  This has been a good journey in "coming out with ra" and helping others I hope with my experiences as well as banter PLEASE KEEP POSTING, I ENJOY HEARING FROM U ALL Xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Rose, Nice to hear from you again, but sorry you are struggling at present - hope things improve soon for you! I won`t leave the NRAS forum either - it was an absolute lifeline when I joined back in 2007, I think. Like Suzanne says, I don`t think the forum will reach the "peaks" it used to, but I`m comfortable here, and have no desire to post elsewhere, certainly not on an open forum. Anne - good luck with your ill-health retirement, and hope your daughter is enjoying St. Andrew`s. Suzanne - well done for getting out to a live concert!! Glad you enjoyed it. Nick took me to see Andre Rieu in December. It was fantastic, but took me a while to stop aching afterwards! Take care all, Kathleen x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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See we are all still a lovely group and it is so nice to speak to old and new friends.
I think we all experience the roller coaster of RA and sometimes our lives can become so insular but it is so good to speak to people who understand.
Rose it is good to hear from your again. Sorry your RA and fibro are not controlled. I take each day as it comes. I am still working but I struggle on some days. I just need to keep positive. I started Simponi about 8 months ago which is finally an anti-tnf which agrees with me - no reaction to it. It is not perfect but I still have a life.
I think this week my illness was put into perspective when I saw the young man on 24 hours in A & E. He suffers from a disease which I cannot remember the name of but his muscles and nerves go into spasm. He is in so much pain it makes him pass out. There is no cure and he goes through flares. They were pumping him full of morphine and he was taking gas and air and he was still passing out. It was absolutely horrendous what he is having to go through but he was still laughing with his Girlfriend.
To all those posting it is good to talk and we are a very special group who know where to find comfort when we need it. Long may the NRAS forum carry on.
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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NRAS forum is a huge lifeline for me, I don't use any other forum sites, mainly because I can't sit at a computer too long and my hands are so painful.
I look at the forum most days, it has really helped me over the years with coming through all types of surgery, infections and starting new drugs. Everyone here is really understanding and friendly. I try and post messages as much as I can type.
I feel really grateful to be part of the forum.
Rebecca
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Newbies - or silent members. Please vote. You don't have to leave a comment (or if you do 'My vote' will do.) But please do vote Rebecca D - could you vote too please? Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Rebecca D wrote:NRAS forum is a huge lifeline for me, I don't use any other forum sites, mainly because I can't sit at a computer too long and my hands are so painful.
Rebecca Rebecca - I don't know what operating system your PC uses but have you tried using dictation software? I use it a lot and it really helps reduce the strain on my hands caused by typing. If you have Windows 7 or 8 then there is pretty good voice recognition software built into the basic operating system and all you will need is a decent microphone, for which a headset is recommended because it keeps the microphone at a fixed distance from your mouth, which helps with accuracy. If you can afford it, then the best dictation software out there, bar none, is Dragon NaturallySpeaking. For those of you in work, a copy of Dragon NaturallySpeaking is one of those reasonable changes that an employer is obliged to make to accommodate your condition. If you use a PC at work then you should press your employer to purchase a copy for you. Amazon has it for £53 for a home user, £77 for an educational user and £95 for a commercial user and most it, if not all, come with a headset in the box, good enough to get you started. If you are wondering how good it is, this entire post has been dictated with just a few minor keystrokes for formatting corrections. The software really is very good. Is it better than the speech recognition software built into Windows? Yes, without question. I started with the native Windows software and quickly switched to Dragon when it became clear that the native Windows software did not interface well with some applications, including Microsoft Office! So, if you can afford it, or you can persuade your employer to buy it for you, it is a worthy investment. Also, you are entitled to install the application onto two computers. So, if your employer buys it for you at work there should be no problem with installing it on your home computer. In use, not only will it reduce the impact on your hands, it will also allow you to adopt a much more comfortable sitting position while you are dictating, because you hardly need to use the keyboard. With sufficient training on your behalf you can also use the software to issue application commands such as "send email to..." I have to say though that I don't bother with that because remembering all of the commands for all of the applications can be daunting. I find that using the application to create my text means that my hands are much more able to handle the command work. The only word of caution that I would give is that voice recognition is one of the most complex tasks a PC can undertake so if you have a very old, very slow PC you might want to be careful before proceeding. Most PCs, apart from real budget models, of the last 3 to 4 years will probably be okay but the simple fact remains that the more processing power and memory you can throw at the application the better. I am extremely fortunate to have a very powerful home PC which I treated myself to recently for a variety of reasons, not the least of which was that as a heavy PC user I knew I needed to use Dragon very frequently. I appreciate that not everybody will be in the same position. Of course, at work, upgrading your PC to a more powerful model to accommodate the Dragon software is another one of the reasonable accommodations that an employer is is obliged to make. I'm going to cross post this information into the equipment part of the forum. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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wow where has everyone been,hello to you all, I too prefer this site I have tried healthcare at the beginning and it was ok,i haven't looked in for months but I do like a bit of privacy and straight answers,i have a facebook acc but hate it only use it to please family,ie look at pictures as one does,i think when the better weather comes we all go off line for some sun I know I do even if its only the garden,take care all,dorothy
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Thanks Paul for your advice, I haven't used dictation software but it is something I will have to look into if I want to continue using a PC.
Thanks again
Rebecca
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi all I look at HU but have never posted on it. Although I don't post that often I look at the forum most days and will stick with it because it was such a lifesaver in my early days with RA. I do miss the old crowd who used to post - it is such a shame they felt they had to move on. I do have a Facebook account but only use it to keep track of my family. I'm a bit nervous about the privacy of it. I haven't posted much because things have been going fairly well but I will try to be more proactive from now on. Suw
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Never used H U and don't like the idea of Facebook , so only use this site and its helped me to cope with my illness
Jackie I watched 24 hours in A& E too , I cried when I saw the young man and the pain he goes through every day !
Sophie
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