Healclick.com – a new way of looking at your health

January 14, 2014 at 5:41 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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There’s a new website launching at 8 am Pacific Time (whatever that is!) and it sounds like (and in fact looks like, as I’ve been playing in the beta sandbox) an interesting idea.

It’s completely free to join and there will be no ads. (How’s it funded? Read on!) It’s designed by patients for patients and the idea it’s kind of social media for patients with a twist. You fill in all your details including your health issues, medications etc. and you can discuss topics, write about anything you want that’s treatment/patient etc. related and read what other people are saying. The twist is that you can look at other registered people (you can find me on there as Pollyanna Penguin) and the site will give you a percentage match to other people on the site, based on your conditions, treatments etc.

So OK, how’s it funded? Well anonymised and grouped data will be sold to research organisations – both pharma and universities. There’s some info on how it will be anonymised  http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html This may or may not be something you feel comfortable with – it sounds fine to me (but then I’m using Pollyanna Penguin on there!) but I’m sure some people wouldn’t be happy with it; well that’s entirely your decision – no pressure! :-)

If you want to give it a go though, here’s where to find it: www.HealClick.com, or if you’d like a little more info, have a look here: www.indiegogo.com/projects/revolutionizing-patient-sharing or here:

 http://blog.healclick.com/uncategorized/we-got-answers

or Wren over at rheumablog also has a post about it – she’s joined too.

I’ve already had someone link to me – presumably we’re a match – or perhaps it’s someone that reads the blog, or maybe both. Frustratingly I can’t find out right now as I’ve stupidly lost my password! Because it’s still in beta, someone’s got to sort this out for me manually, but I’m sure once it’s live it’ll be as easy as any other site when you lose your password (which I blush to admit I do all the time!) Anyway, I’m excited to find out and I’ll be watching the site with interest to see how it develops. See you there?

Walk in blood-test update

December 6, 2013 at 9:37 am | Posted in rheumatoid arthritis (RA) | 2 Comments

Well I went for my first walk-in blood test yesterday. It was, of course, the predicted ‘disaster’ but not in the way I had imagined. In fact, I didn’t have to wait at all!! Amazing, huh? Well … not really. The reason I didn’t have to wait was that the blood test clinic was finished by the time I went in.

I had a busy day yesterday – it’s coming up to Christmas so the ”Junior penguins’ as my colleagues are affectionately known,  even though one is a little older than me, are taking all their remaining holiday in the run-up to Christmas. Who told me it was a good idea, when I started this business, to run the holiday year January to December? So I didn’t go down to the surgery until about 12:00.

Now you know that I know that I knew better if you’ve read the previous post, but you will also know that I wasn’t that bothered about having one of these tests so I thought I’d try it and see. The letter we all received from the surgery said, ‘please come in for your bloods every four weeks on a Thursday…’ with no indication of time.

When I arrived I saw the board (where you take your little number from) was gone, so I said to the receptionist, ‘Has the blood clinic finished then?’ ‘Oh yes,’ says she, ‘ it runs from 8:30 to 11:00.’ Well that explains why that poor woman a few weeks ago had been waiting an hour and a half from 7:30 then – no one had told her it didn’t start till 8:30 … and no one had told me it finished at 11:00. I pointed out to the receptionist that it might have been helpful to have put times in the letter and she opened her big, blue eyes wide and said, ‘Yeah …’ So I’m sure that will be fed back at the next meeting with the practice manager … NOT!

There were also big notices around saying ‘If you need to be seen quickly for your walk-in blood test for work, personal or any other reason, please arrive between 8:30 and 9:00 …’ So clearly their ‘We can see everyone in and out in 30 seconds flat’ or whatever it was is as much of a dismal failure now as it was a few weeks ago.

Well done guys!

Still … reasons to be cheerful* – I don’t NEED a monthly blood test, according to all the stats, so that’s fine by me. I’ll keep on having the three-monthly ones with my lovely rheumy nurse. It’s not as though anything ever shows up in my bloods anyway (well hardly ever), so I’m really not that fussed … just irritated on behalf of everyone else whose bloods do matter!  (OK, and irritated because I’ve got a bit of PMT and I have to be irritated about SOMETHING!)  :-)

 

 

* I am Pollyanna Penguin after all – have to play Pollyanna’s glad game sometimes!!

Good GRIEF – advertising doctors part 2

December 2, 2013 at 3:33 pm | Posted in rheumatoid arthritis (RA) | 13 Comments

No sooner had I posted the post below, when bam, this hits my inbox … from the SAME doctors. How lame is that? If I hadn’t been suspicious the first time, I think I might have been this time!

Ankle pain can be a issue for any one who likes to be active. Nobody likes to sit whole day due a bad ankle. Before its too late it’s always good to get it checked with Rheumatologist. I had same thing happened with me a year ago, I got it checked with Dr. xxxxxx. It took time to heal, but atlast got cured and I back with my football practice.

Before it’s too late, you fool – use the apostrophe! And ‘a Rheumatologist’. and ‘I had the same thing happen to me’ and actually no, you didn’t because you’re a lying little … I could go on, but i have more important things to do with my time … like dribble Decaffeinated Diet Coke down my top. (If this puzzles you, have a glance at the previous post!)

 

Advertising doctors

December 2, 2013 at 2:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 2 Comments

Being in the UK, where doctors are forbidden from advertising, and coming from a family full of doctors, the whole concept of doctors advertising makes me feel slightly queasy, although I appreciate that in other cultures (notably the US of course) it’s absolutely the norm; but when I get advertising pretending to be a comment on my blog it doesn’t just make me queasy, it makes me cross.

We’ve had this before of course – from ‘the mattress people’ among others – but when it’s a doctor it makes me really angry – especially when I’m sitting here in pain and dribbling my coffee after just having had a tooth filled … thus not being in the best of moods anyway. (The pain is RA – the tooth doesn’t hurt at the moment, being numb!)

Here is the comment from the doctor (or at least the doctor’s marketing people) that has got me so riled – but sorry guys – your link and name won’t appear!

Continued pain issue, clueless Rheumatologist, non-stop painkiller, side effects, seems like story of everybody with Rheumatoid Arthritis. Whether you are already diagnosed or feeling pain, choosing a right Rheumatologist can make or break you. Like, my had a issue in her knee and it was treated. Though it pains her sometime but her Rheumatologist at xxxxxxx, make it sure it happens seldom and we trust them. So, it’s better to ask your Rheumatologist even in slightest pain before it magnifies.

They can’t even think of an appropriate person who is supposed to have RA – note the ‘my had a issue in her knee’.  My what – and don’t you mean ‘an issue’? And it should be ‘simetimes’ and that ‘Like’ is poor usage and so is the ‘but’ and why should my Rheumatologist be in the slightest pain? (I’m a bit of a grammar freak, especially when in a bad mood!)

And don’t you just love the ‘and we trust them’ when this is actually FROM them?! Perhaps what it should have read was ‘my patient had an issue in her knee’.

At least  I suppose I should give them points for having actually read the article and commented appropriately … but nobody gets points in my book for ‘black hat marketing’.

Grrrrrrrrrrrrrrrrrrrrr… right, back to work … and dribbling.

The joys of the walk-in blood test clinic

November 22, 2013 at 6:00 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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Last time I had my monthly (now three-monthly) rheumy nurse appointment at the surgery, they happened to be running the first walk-in blood test clinic. These will run every Thursday – no appointment necessary, just turn up any time on Thursday, take a ticket, sit down, wait to be called and have your blood taken. No actual nurse appointment – in and out, ram in the needle, suck the blood, off you go. Well … that’s the theory.

My rheumy nurse had blithely assured me that they had run trials on this and each person could be seen and sent on their merry way in 1.5 minutes. I’m sure you won’t be surprised to hear that this wasn’t quite the way things were going on the day I happened to be there. As I say, I wasn’t there for one of these walk-in tests – I just had the dubious pleasure of observing while waiting for my appointment. I am supposed to go along in a couple of weeks time for one.

Well I arrived around 8:30 for my appointment and saw a big board on the wall with raffle-ticket type numbers on it. They had obviously run from 1 to 50 but 40 of the tickets were already gone and the waiting room was alarmingly full. As I sat down a weary looking phlebotomist poked her head round the door and yelled ‘Seven … seven? Is number seven here?’ Number seven was not there – I think number seven had got fed up with waiting and gone home!

‘Eight … number eight?’ A grumpy woman got up and pointed out she’d been there since 7:30 that morning and had now waited an hour for one of these quick appointments.

When I went in for my appointment (dead on time, bless her!) my dear nurse looked a tad frazzled. ‘What IS going on out there?’ I asked, and she explained that this was the first run of this new system, they were two nurses down  and the practice manager was on holiday! She was trying to fit in the odd ‘walk in’ patient on top of her full rheumy list, to help out.

Well – that couldn’t be helped, could it? I mean if people call in sick, you’re stuck, aren’t you? No one to blame. And of course the NHS can’t afford to employ locum/bank nurses to fill in – just one of those things, I thought.

Then I thought again. I know this place, I thought … ‘Erm … dear rheumy nurse,’ says I, ‘how long have these ladies been off sick?’

‘Oh, don’t!’ says the dear nurse, ‘Joan’s been off so long I can’t even remember and Julie’s recovering from an operation so she’ll be off a while.’

Right … so whose bright idea was it to start off this system KNOWING they were two staff down and couldn’t possibly cope? I don’t know but I can guess … someone who was on holiday, perhaps?

By the way, when I came out from my 15 minute appointment there was a nurse shouting ‘Ten … number 10 …’

So ‘we can turn these people round in 1.5 minutes’ had apparently turned into ‘We can turn these people around in … um … probably about 15 minutes’ given that there were two nurses doing this walk-in full-time and others stepping in when they could.

Number 43 was off the board by then – I wonder how long until they ran out of tickets – I overheard a receptionist saying, ‘Oh, I think they’ve all gone – you’ll have to come back next week’ to someone, before realising there were some tickets left, so presumably there are only 50 slots and ‘Turn up any time on Thursday will actually mean ‘Turn up before 9 on Thursday or you’ll be out of luck.’

Of course the new Clinical Commissioning system that is now in place but not in place and has no one actually running it is no doubt partly to blame … but that’s a whole nuther story …

Healthline Best Health Blog Contest

November 22, 2013 at 9:40 am | Posted in rheumatoid arthritis (RA) | 2 Comments
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Hurrah – Pollyanna Penguin’s blog has been nominated for Best Health Blog by Healthline … along with a HUGE number of other blogs, including a goodly number of those in my blogroll … maybe even all of them, I haven’t checked – certainly Carla’s Corner and Rheumablog are up there too, as is Rheumatoid Arthritis Guy, Rheumatoid Arthritis Warrior – who came second last year, pipped to the post by a breast cancer blog.

You can vote for US ALL (and more) here if you want to – or if I manage to set up a nifty little voting widget like Wren has on Rhuemablog you can vote through that – and if you can cope with the slightly convoluted ‘Vote via Facebook or Twitter’ system and the fact that to find the blog you’re looking for you have to keep clicking on ‘alphabetical’ and guessing what page it’s likely to be – here’s a clue – I think we’re on page 15 at the moment and all the others beginning with R are not far after! :-) However, make sure you’re in ‘alphabetical’ and not ‘popularity’ or you’ll be completely thrown!

All votes greatly appreciated – there are many more deserving than me – so go vote for them … but while you’re at it I’d love to have a vote too! <Grin>

Three-monthly blood tests

November 19, 2013 at 9:56 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 7 Comments
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The hospital has decreed that patients on methotrexate for RA no longer need monthly blood tests – they will now be three-monthly instead. Now I don’t have a problem with having my blood tests every three months – as yet I’ve never had a single blip in my tests and if the hospital say three-monthly is safe I suppose I have to believe them and not just assume this is purely a cynical money-saving exercise: ‘Hey, what’s the odd life lost compared to a few thousand pounds saved, eh? Let’s do it! Right lads, down the pub …’

What I do have a problem with is the fact that they can’t book tests three months in advance, and yet we’ve been told to contact the rheumy nurse to make the next appointment. There IS NO WAY to contact her except by making an appointment to see her … a bit of a circular argument! My sensible and lovely nurse realised this straight away and in fact pointed it out to me with a comment on the lines of ‘I’ve told them ALL individually in reception, so don’t take any nonsense if they tell you that you should have booked it through me!’

OK, so that’s hopefully sorted out even before it becomes a problem, but how crazy that we can’t just book the tests when we see the nurse!

The surgery have also arranged monthly ‘walk-in clinic’ tests for the months we don’t see the rheumy nurse … but that’s a whole nuther story … a post to come in a day or so.

At last – significant, coordinated research into the WHYs of RA!

October 9, 2013 at 11:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 3 Comments
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Look around the RA blogging community for a while and you’ll see some consistent themes. One is that it’s hard to explain to Joe Public what RA is – another is that most of the drugs are by-products of research into other diseases (methotrexate for example, and most of the biologics were developed as cancer treatments) and there is little fundamental research into RA.

That picture has been getting better over the last few years, and it’s taking another step in the right direction. Arthritis Research UK, along with the Universities of Glasgow, Newcastle and Birmingham,  is funding a major new initiative, the Rheumatoid Arthritis Pathogenesis Centre of Excellence, to be run from Glasgow. The centre’s main focus will be on why RA starts, why it attacks the joints, and why it doesn’t stop. These are fundamental questions, basic science, but the answers, if they can find them, are likely to lead to a host of potential new treatments.

As I understand it the ‘centre’ is virtual rather than physical, but it will mean the three universities and other partners undertaking major collaborations into these fundamental areas.

Science is a slow business – results may be a long time coming – but it’s great to know that there is a good level of funding for this fundamental research into rheumatoid arthritis.

And remember – if you’re based in the UK too, you can get 20% of Physicool products until 9 November 2013.

Physicool products – 20% off

October 7, 2013 at 1:51 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, rheumatoid arthritis (RA) | 4 Comments
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Further to my review of a Physicool cooling bandage, I’m delighted to announce that the company are offering 20% off to anyone putting in the code ‘penguin‘ into the coupons option at the checkout, until 9 November 2013.

At the moment this only applies to readers in the UK.

Physicool

Please note: I do not work for this company or stand to make any profit from this in any way. I found it a useful product and if you choose to use this promotion then I hope you do too!

Ankle pain … but not RA?

October 7, 2013 at 1:26 pm | Posted in rheumatoid arthritis (RA) | 7 Comments

I have had very severe ankle pain since Thursday – but I don’t think it can be RA because it’s on the outside of my ankle. My anatomy is pretty poor but I’ve done some Google searches and some reading and I don’t think the outside ankle joint is a synovial joint – no synovial joint, presumably no RA? Could it just be a sprain? I don’t see how because I have no recollection of spraining it or going over on that ankle or anything, so I really don’t know what’s going on.

I have been pretty unsuccessful at keeping it up – I did keep it up for most of Friday and cancelled work and two different plans to see friends, but when it came to cancelling our wedding anniversary plans I … erm … forgive the fun … put my foot down! We had a lovely wedding anniversary lunch in Norwich on Saturday – but maybe pounding round the shops beforehand wasn’t such a great idea? Although having said that, we did buy a new bed, which is something that’s been on the list for quite a while and which could help with all these problems, since it’s always worst at night.

Now there’s a thing – I’d figured (until I started looking up ankles in Wikipedia etc.!) that it must be RA because it was either RA or osteo and osteo would be worse if I walked on it, not at night in bed … but now I’m thinking perhaps I’ve just sprained something.

Any thoughts to help out a confused Penguin would be much appreciated!

Of course, like the recent hip pain, I’ll be delighted it if it isn’t RA-related as I needn’t start panicking that the methotrexate isn’t doing its job!

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