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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Guys I'm feeling very lonely  I come on here for a bit of life and spirit, a little upbeat jingo and chit chat and to catch up on the buzz. But these days there's something missing ... er ... the members! Where is everyone? I know the lympies start today but it's been quiet for weeks! Am I missing something? Have you all done a runner? Lyn xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 154
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Oh Lyn, don't be lonely, especially as you are going through so much. I do think of you every day actually and wonder how things are going with you. From your last post, it looks like not so good and I am so very sorry. I cant believe all this has happened relatively quickly for you and it must be really difficult to deal with emotionally as well as physically. Hope your lovely family are around to keep your spirits up. I suspect that like me, you hide as much as you can from them, but they arent daft are they?!! Are you having warm weather farther north? It has been actual summer here this week, but all set to change with thunderstorms forecast tonight. I like a bit of a storm over the sea, but wouldn't like to be on it though! I dont know where everyone is, but would love to think they are all better  Perhaps they are just soaking up the few rays and vitamin D while the going is good. Looking forward to the Olympics opening ceremony tonight - who will the mystery firelighter be I wonder? I used to love sport at school - havent been able to run for about 50 years but in my head I still can Hope you have a good weekend and let family look after you. Got little grandson coming over in a minute so better get the toy box out (for me and Grandad of course!) Take good care Lyn and keep posting, I'm usually around even if I dont say a lot. Love Lizxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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I'm still around too- not got much to say though apart from thank goodness for some sun! Unfortunately- much sun= many ice creams and ice lollies!!!!!
Look after yourself
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Lynne and all, yes I think everyone must be out enjoying the weather or on hols.... my family seem to all be either, away on holiday or packing to go away! We have been rather absorbed with our little dog this week. He started to limp on his left front paw last Friday. He obviously had some problem with it, licking it all the time, not putting any weight on it at all and cried if we tried to have a look. So off to the vets on Saturday morning, told her it was his paw even pointed out which toe it seemed to be and how hot it was. He was crying so much everytime she tried to touch his paw that she could not see anything. She decided to sedate him to have a proper look and exray it in case of a broken toe. Fine we went home, back later to pick him up and was handed a bottle of anti inflametry med for him and told it was a pulled muscle in his leg!!! I couldn't believe it, had she been looking at the right dog!! Asked about his paw, no she couldn't see anything asked about a possible infection because his paw was so hot, no just said it must be a strain. She obviously did not like my questioning her diagnosis. So O.K. paid the £124.00 bill. By monday toe was very inflamed and swollen, so this time my daughter rang the vet. Said could she bring him back, not happy with diagnosis, still the receptionist argued that his paw was fine and he had been examined very well. Eventually after saying that with respect we knew the dog better and he was licking and licking his paw they agreed to see him again. Thankfully it was a diff vet much more ready to listen. He had to be sedated again exrayed from a diff angle and could see straight away that he had a sceptic subcutaneous cyst. So he is now at home recovering, poor boy. My daughter argued the toss about the new bill for re-examining him etc. and they eventually agreed to reduce it a bit..... Still feel very cross, but just glad that he is O.K. He has been having his walks out on my lap on my scooter, enjoying the weather seems very happy with that, get a few strange looks and comments but hopefully will be back to normal soon. Best wishes to you all, hope you are not struggling too much, Zena x.
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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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 Hi Lyn I'm around! I log on a few times a day. Maybe people have gone on holiday? Or out in the sun? My husband took me out to Bath earlier, couldn't walk far - feel so stiff. Only looked around a couple of shops close my the car park. Never made it to cath kidston or disney shop, try again on another day. Have pins out on foot next Tuesday, then contact ra nurse for steroid injection and go back on methtrix......need jump starting!! I didn't relise until my foot op that they can't give you additional help with ra pain until pins have come out so it doesn't interfere with recovery. Not complaining of the weather because it get me out for vitimin d.......shame weather is due to change :-( the lovely weather is good for my daughter sun flowers we have growing on the window in the kitchen. We bought a few packets of various seeds to pot and put in our little green house (plastic type) sadly due to the operation date coming so quickly, I decided just do some sunflowers instead! My daughter wanted to grow cress - turned out on mass in a green pot she was so excited to see it growing! I'm not bothered about the olympics........the boating and swimming/diving I may watch Monday 3pm diving! I am around to catch up with peoples news on here! Zena How's your dog? Vets are naughty, they don't relise its us that have to pay for each visit and their medications. What type have you got? I Have 2 king charles cavaliers, they love food! Take care Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Lyn, I`m here, but been a bit poorly sick for last few days - tummy bug, unfortunately. I`m looking forward to the Olympics too - especially the athletics, cycling & hockey. At school I used to play hockey every weekend, for school and club, then county, and I also threw the javelin at school and ran 8oom, though of course in those days it was the 880 yards! Those were the days, indeed!! I won`t be around much next week as we have our little grandsons coming for a three-night sleepover - arrive Tues night & go home Fri night. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Lyn,
i do look in most days, but don't post as much as i'm used to really.
i'm doing quite well still on Humira plus the Methotrexate and Hydroxy.
my hubby has been home more as he has so much holiday left to take before he retires at the end of the year, so i've been out and about more.
we are off on our hols on Monday staying in the country but really looking forward to it.
i hope things start to improve for you Lyn, you've been through so much but always an inspiration on the forum.
take care of yourself and best wishes to all,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I'm here! Been putting up a small raised pond in the garden, I've got 3 golfish in and four snails---all running on solar power! (not the snails---the fountain)! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Jane, Theo is a little westie, he is a lot better now almost finished his antibiotics and getting back to his normal bouncy self. We adopted him a couple of years ago, aged 13 mnths and we just love him to bits. These furry friends are an absolute delight, he gets me out and about when otherwise I would not be bothered.
Yesterday we were trundling along the canal towpath, Theo on my lap and my hubby by my side when jogging along the path came Iolo Williams the Welsh nature prog. presenter, he was on Springwatch this year. I knew he lived locally but never met him before, a very nice chap.
Anyway must get back to more imp. matters, ie. the olympics and shelling peas, freshly picked from the garden, 2nd bucket this morning and a couple more to pick yet so I've just been told, yummy yummy, brill for freezing!
Zena xx.
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Lynn, I've logged on most days but like you the place seemed to be deserted, not many posts, I put it down to being holiday time! Glad to see from some of your other answers that there are people about. How are things going with you, I know you haven't been very good recently. Hope things have improved for you, even if it's just a little bit. All the best Mary
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Lyn
More people seem to be posting on Facebook and Rheum at the Inn which is a shame as we need them on this site with their experience and encouragement.
Off to watch Rebecca Addlington hopefully win a Gold.
Take care
Jackie xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Great to see that there are still folk around! As Jackie so rightly says we do need people posting their experiences and general chit chat on here. This is as excellent resource both for the newly diagnosed and those with long standing disease. The ability to be able to share experiences, good and bad, provides a wealth of information for everyone. At one time, and not that long ago, we had probably over a hundred active Forum members but for various reasons that number has dwindled significantly. Unfortunately we were hard hit by the introduction of Health Unlocked which has detracted and, I believe, possibly deterred members from joining the Forum. This is a safe online environment for NRAS members to enjoy support and friendship and benefit from what that has to offer. There are close on 4000 NRAS members yet only a handful using the Forum. Wonder why? Do people find out what they want and then don't come back? Rhetoical questions really! Would hate to lose the Forum as I feel it plays a very important supportive role in the lives of NRAS members. I think we normally have a bit of a 'lull' during the summer and the place is a little quieter, less activity etc. so fingers crossed people return to 'the fold' very soon Lyn xx Loved reading about what everyone's been up to  A busy lot ... considering you've all got Rheumatoid!
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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we don't look ill do we?!? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 83
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Lyn
We have noticed that the forum seems to be used by fewer Members and numbers have continued to decline over the last few months. The average posts per day are 48, but I suspect most of these come from the same dedicated bunch of people! We do tell all new Members about the forum and always list it as a Member benefit whenever we talk about membership so I am not sure why more people don't utilise this resource. A much larger number of Members view the forum but don't post so I am guessing take comfort and support from just reading what others are saying and sharing.
Health Unlocked has doubtless played a part, as people will use this site instead of the forum, perhaps because they are happy to just blog or ask questions and do not want the supportive more personal role that the forum plays. We are working with Health Unlocked to more actively promote NRAS and drive people to the site so this will hopefully have a positive effect on forum visitors but it is a work in progress so may take a little time.
We would be more than happy to take on board any ideas forum users have for how we can invigorate the forum and try and 'activate' it again to encourage more people to post and be part of the NRAS community so thinking caps on everyone!
I do hope things are improving for you Lyn.
Tracey
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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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 Hi Tracey I just read your post, what is health unlocked? I enjoy the forum, began being a member May this year when I felt ready to chat/share experiences with other ra people. To me the forum is really good - I can read how people are and how their ra is effecting them. We have a banter, encourage each other on. Also saying hello to the newbies! We are a friendly bunch I think. Shame that more people don't feel they want to join in, maybe they prefer just to read. If you are the person that just reads the posts, type something back say hello!!! Is the forum members advertised on the main page and in magazine? Just watching Tom doing his diving, joint first with China! Take care Jane Xxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 83
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Hi Jane
Thanks for your comments.
We do remind people about the forum and are including a short piece in the Autumn issue of the Magazine to remind people that it's here for them to use. Let's see if it sparks some activity, I hope so!
Tracey
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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It seems to me that many people don't use the Forum because they think they get all they need from Health Unlocked. Blogs, questions answered by NRAS etc and it's totally free. The attitude seems to be "if it's free, why should we pay". Sadly, having been a member of HU for a short time, I found it a hotchpotch of moans and grumbles with (then) some very dodgy medical advice. Maybe things have changed since then. Mixed in with serious matters, you are likely to hear about someone's parrott! There are also many so called "volunteers" on there and I question who appoints them, what qualifications they have, whether they have received any training etc. Just my opinion, you understand.
With regard to Rheum at the Inn, which is a private "by invitation only" site, many of us feel it is absolutely necessary as it's self moderating and we can speak freely without fear of having our posts moderated or taken off, which is not always the case here. Sorry NRAS, but in view of the problems we've had with the forum in the past, lots of us felt we needed somewhere totally safe to talk about anything. Since its inception, it has been a God send to many and we now have many folks who have RA but are not members of NRAS.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 302 Location: Rainham Kent
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I totally agree with Jeans first paragraph. Having read the HU site earlier I was disappointed with the moaning and general despondancy that is there. Perhaps NRAS members are more aware of their conditions and the chance to get the help from "head office". I am glad to see the response today from Tracey. With the weather we've had this year I wonder if we are all feeling a bit low and haven't got out to comment as much as usual. I always look at "a bit of fun" and "chin wag" but very little comment recently. Anne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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I have been interested to read everyone's comments about NRAS and the response from NRAS themselves.
I can honestly say that without this forum, I would never have got through those first dark months following diagnosis and two and half years later I am still searching for answers and support, but am now more confident that I am not alone with the dreadful disease.
I have spoken to many people who either have RA or know someone who does and they had no idea about the forum available on the NRAS site. When sitting in the Rheumatology Clinic I saw a poster about NRAS but it did not jump out at me that there was a forum where I could talk to people in the same position. Forums and blogging at such a big part of everyday life, that I think NRAS should make a big play on it and do a light advertising campaign of where you can find a forum to chat, get first hand experience of what happens with RA and have a laugh along the way.
Could they approach local radio stations to do a little advertising for them? Could they offer a free month's taster membership followed by a paid membership to capture the interest of people? Once I started on the forum I was hooked and was quite happy to pay the membership fee.
They also need to increase their advertising of their magazine. I gave my copy to someone who has had RA for years and she could not believe how brilliant it was and how much information she gained from it. I hope she has now joined.
Finally when I was first diagnosed, it was only by chance that I found out about NRAS on the interest. The Rheumatology Team at that time never mentioned there were sites which could be accessed to find more information. I don't know if they have to be impartia,l but I would be been very interested to know that there was a forum available.
I do hope that we can bump the membership up again and make it the lively forum it was when I first joined.
Jackie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Sorry distracted by the swimming Second to last paragraph should have read "it was only by chance that I found out about NRAS on the internet"............... So distracted by possible medals
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