What do you think?

What do you think?

I feel loads of brilliant advice sometimes seems to be "lost" as a reply to another blog, when the importance of what is being said could do with its own showcase. Both Cece and Lyn have come up with such excellent help and advise. I find that sometimes if you don't come on here regularly, you don;t look through all the replies that have been given since your last visit and then info is lost.

I know sometimes someone has asked a question that has already been dealt with but sort of inside another blog. Does anyone know what I'm talking about because I can be a bit cryptic?? I know I will put this up as a blog???

My god perhaps i took two many tablets this morning.

Any road up, I agree!

JulieX

P.S. I am now going to do battle in Sainsburys - which is our supermarket of the week because we got some money off vouchers!! Ta ra a bit...

17 Replies

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  • hope you didnt take too many.!!. i went and bought a week thingy.. got it home.. got a four day hol coming up.. not sure i can fit all tabs in it he he..

    .will keep painkillers and the female tab sep just to make some space lol... all chemists can put tabs in dosette box..i try to avoid doing this it hurts poor ra fingers.. people of sound mind are more than capable of filling their own or may be doing without.. my pet gripe is pill manufactures use stiff foil ,aspirin 75mg springs immedialetly to mind!! and child proof tops as standard grrr.. then if you can find a non childproof bottle they can then be transferred.. my grip is o poor the rubber turny things dont work aaagh.. I have a small blue round one which is blue and dome shaped looks like an oldfashioned female contraceptive device.. answers on back of a postcard as to what this may be he he xx

  • Hi Julie

    This is something of a concern of mine and you've hit the nail bang on its head! Just spent 45 minutes going through posts to read replies and keep up. Now I haven't time left to type anything!

    This is a blog site that seems to have turned into a chat room/forum! Most of the stuff should be on the NRAS forum in the category to which it applies. This site, I feel, should retain it's original purpose which is for blogging. Its very difficult to find anything even using the search facility.

    A lot of 'newly diagnosed' would get more benefit from the question and answer style set up of the forum; I'm not really sure why folk have ended up here instead! Hmm ... time for thinking cap methinks :)

    Lyn x

    PS Love the chickadee hen birds! Beautiful colouring :)

  • I'm glad you said this Lyn as I thought it was just me, I thought blogging was sort of writing an article of some sort concerning RA of course.

    But most of them aren't really bloggs at all, things seem to have gone astray, I imagined writing bloggs on my RA experiences to help others and visa vers, ah well.

    mand xx

  • Hi Mand, the original instructions for the site were just as you describe! So in theory it should be a series of articles relating to RA and life experiences of living with the disease that others can learn from. In which case it would be quite easy to find stuff again!

    Instead it seems to have turned into a chat room dealing with situations that are already well covered by the forum; newly diagnosed springs to mind. There's also a wealth of support available through the forum pages.

    I am about to do a 'blog' on ESR and CRP but I know it will quickly disappear off the first page as other postings are made. How many people have time to go back through posts to see what they have missed? The way the pages are set up are specific to' blogging' not chat room which is why I suppose stuff is getting buried and lost.

    Ah well, it's another resource for people and that's what it's about at the end of the day. But to my mind it's not blogging!

    Lyn x

  • I agree with you Julie, ut not sure how we can solve the problem.

    Lyn....when I was first diagnosed I went on the NRAS forum chat room and quite frankly after a few days I was ready to slit my wrists. When I saw the chance to blog thought I would take a look. On this site people say it like it is but somehow not in a pity me way, it always seems constructive even in the depths. So I wouldn't go back to the forum. This site is friendly, informative, and supportive.

    I will accept that in early diagnosis days perhaps I was not ready to hear what forum chatters had to say.......but it's difficult to shake off first impressions.

    Sue x

  • Hi Sue, that's really interesting to hear. It sounds as though what you felt is something I haven't noticed on the forum. There again my perspective with long term disease is rather different and I have used the forum for a few years now. First impressions do count for a lot so understand where you are coming from on that.

    I agree with you that this HU site is very much an informative media and the information is generally constructive. The support is really brilliant too ... the friendship that has developed in such a short time is pretty amazing really :)

    There's certainly a place for both to work well together so I suppose it's striking a happy balance. It will be interesting to hear what others think too!

    Lyn x

  • Phew thought it was just me. Well here we are again, doing it once more! Like Lyn by the time you have trawled through the blogs an replies, you've no time left to blog. It's a tricky one. But I think there should be that distinction between the forum and the blogging site. Hopefully one of the admin will read this and come up with a few suggestions too!

    i think each one of us has story to tell, whether new old (sorry Lyn not you!) or in the middle and relating how we are each dealing with it is important, quite simply because this god damn disease treats us all differently with a lot of common threads. But the depth and breadth of the knowledge that some have is so invaluable and should be more easy to find.

    Lyn you are so right about the friendship too, it is quite astonishing, but then you know I met Mr Shepherd in a AOL chat room (the over 40's) and you know what, I fell in love with him before I met him! That's the gods honest truth, and also another story........(soppy nit)

    So let's all keep blogging.

    Julie x

  • Hi Julie, like you say it is a tricky one, like I said earlier it's not quite what I thought. However, I have been helped by others so much and hope my experiences have helped others too.

    I think we have all got so close we've become so relaxed with each other, and just get a little carried away. Don't think I would like to change it to much though we've always got people like Lyn to write some fantastic bloggs and help keep us on the straight and narrow.

    mand xx

  • I just read Alison's reply at the top it so made me laugh, completely off the track. Oh Alison surely to many tablets!!!!!

    mand xx

  • no SMALL tablet box?? which I bought lfor £1, I TAKE 14 mg prednislone now thats two 5mg and four 1mg. then (anti inflamms(arcoxia 30mg and 60mg. thats two tabs,, then omega 3. 1 capsule, rantidine. two tabs(uncoated pred in my health authority!!) to protect my stomach (painkiller straight co-codamol 15.500mg)

    these will leave out of my £1 box for hol cerazette pill(for irreg bleeding) leave out also, my dmard med is gold injection.. also taking diazepam for muscle spasm in neck,, will leave these out.. so will end up with filled pill boc for four day hol and a couple of loss packets too lol, so on relfection lots of tablets,

    dont need to be at work as have my ownpharamcy at home loh he he x

  • Hi Alison, how do you get on with the Diazapan? any side effects?

    mand xx

  • I agree that boundaries are beginning to blur between this and forum. The (mini) problem I find on this blog site is that I'd like to follow the bloggers individually, but have never been able to find how to get up all the blogs for one person - so end up having to read the most recent for whoever's blogged which can be a bit disconnected and encourages random replies. But yes, the forum should be used for Q&A and stuff rather than this site but I too find the forum deeply depressing, which may be one reason why this site is being used a bit like a forum. Like Sue I struggled hugely with it to begin with and even now I limit my time on it as find that if I spend too much time on the forum I get v negative. Also find it hard as only 10% of the members post the majority of the stuff and there's 50% of members who never post - which makes it very off putting for a newbie as feels as if it's dominated by a clique.

  • Hi, I know what you mean I've never used the forum found this much better, I just think we get a bit carried away as were getting to know each other so well and like you say use it like a chat forum.

    I too would like to read peoples own bloggs but there doesn't seem a way to bring them up all together as it would be interesting to read what they have to say on their subjects.

    mand xx

  • Hi, I've just discovered that you CAN read blogs by author, click on this link and it'll take you to the Archives and you can choose your blogger from there...

    nras.healthunlocked.com/blo...

    Hope that helps!

    Jo

  • Me again.. Just looking at the intro pages to Health Unlocked and there's an optional app called Helpvine that seems to be about collecting good info to questions, using expert patients (that's you Lynn!) and also has possibility of connecting to doc/nurses. I think it would be great to have that for this RA community - but I have no idea how I communicate with the administrators to see if there's a wider interest than just me. Polly (& yet again using this site as forum, not blog site...)

  • Not sure if everyone knows this but you can keep uptodate my getting an email sent to you everytime someone creates a new blog or everytime someone comments on a blog too.

    Julie x

  • I have not read anyone else's replies 'cos there are quite frankly loads and I'm knackered but just recently I began to lose a little bit of faith in the purpose behind the site. I have been feeling slightly disappointed by it's lack of current 'blog' structure. It happened when it changed to community blogs and we lost our Blogger statuses, although I've continued to post have felt it more difficult to properly BLOG. I've got loads of ideas for articles but am not sure if I'd come across as a bit prententious now?! Something needs addressing somewhere with someone ;)

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