The latest on the blood test fiasco

January 29, 2014 at 3:12 pm | Posted in Me, rheumatoid arthritis (RA) | 8 Comments
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Here’s the thing. You may remember that I said back in November that the hospital were happy for us to have 3-monthly blood-tests for methotrexate? Well it turns out that I’d misunderstood. It appears that the hospital are happy for us to have monthly blood tests but only see the surgery rheumy nurse three-monthly. They are NOT happy to have methotrexate patients checked only three-monthly.

Well that would mean attending the walk-in blood-test appointments, and if you reading my most recent post on this you’ll know they’re a joke – or they would be a joke if they weren’t a tragedy. Today I attended my three-monthly test and had a wee chat to my lovely rheumy nurse about the monthly tests.

They seem to have put the blood tests on a Wednesday now, although my last notification was for a Thursday – perhaps it’s both now. If so, it’s not helping. The nurse freely admitted that the system was a disaster and I witnessed the rugby scrum as the board with the little numbers stuck to it was brought out by the receptionist.

Walking-sticks flying, old people beat others out of the way as they charged toward the board, knocking down the poor receptionist who was trying to attach it the wall. An ambulance had to be called to  cart off the trampled people when the scrum was over.

OK, I exaggerated just a tad there, but not as much as you’d think!

In spite of the fact that there’s a notice up saying ‘Unless you have a really important personal reason or work, please don’t come in before 9:30 for the blood test’ I don’t think one person in the scrum was under 80. Now the thing is, from experience they all know that there’s going to be a 1.5-2 hour wait, and they have lives too – why on earth should they wait 2 hours just because they don’t have work – so I don’t blame anyone, of any age for coming in at 8:15 plus rather than 9:30 – but the whole thing is just a failure … and surprise surprise, staff are going off sick with stress – so would I be, I think, under the circumstances!

The only light at the end of the tunnel maybe, maybe, maybe, the hospital will see that people are not ‘complying’ with their monthly tests and then tell the surgery they have to reinstate tests with the rheumy nurse each month – I don’t suppose that will happen though. They’ll probably just tell the patients off instead.

It’s not the lack of rheumy nurse I object to – it’s the lack of an appointment time , and a sensible one at that, that doesn’t assume each patient can be dealt with in 2.5 seconds or whatever their crazy trial showed!

Come and join me in a Facebook chat

January 25, 2014 at 12:12 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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‘What?’ cries anyone that knows me. ‘You? Chatting on Facebook? Didn’t even know you knew HOW to chat on Facebook.’ Well … just about… with a bit of help. This is for IFAA – International Foundation for Autoimmune Arthritis. I’m one of their ‘blog leaders’ helping to spread the word about their work … although I’m not very good at remembering to post etc. so I thought I should make the effort to get over Facebook-phobia! Here are the details about the chat but NOTE IT IS 8:30pm UK time!

Here’s the link: https://www.facebook.com/IFAutoimmuneArthritis Hoping to ‘meet’ you there.

 

Polly Blog Leader Feature Template

No hairspray!

January 21, 2014 at 4:15 pm | Posted in rheumatoid arthritis (RA) | 2 Comments

This is a very quick update to my hairspray post. Good news – NO hairspray today – so I figure it must have been the sinuses! Hurrah!

Healclick.com – update review

January 21, 2014 at 11:29 am | Posted in rheumatoid arthritis (RA) | 3 Comments

I introduced Healclick last week with this post. In a nutshell, it’s a site that’s run for patients, by patients, and aims, amongst other things, to match people up to people suffering similar problems and symptoms and who are similar all round.

Well … they seem to be having a few teething problems at the moment but I hope people will bear with them while they get sorted, as it does seem a really good idea, if they can crack the technology! When I first signed up, they were matching people with percentages, but getting ‘100% match’ for a man who had RA along with a plethora of other things, just because he was close in age (is that really THAT relevant I wonder?) and perhaps because he was geographically close, didn’t really work for me. I can’t be 100% similar to a man, let alone all the other issues we didn’t share – so I wasn’t really that impressed with the matching system. And one of my 80% matches was someone who had migraines – well yeah, so do I, but she didn’t have arthritis at all.

Then they changed the way you viewed matches so that the percentages disappeared – a good move I think. It went to ‘great match’ or ‘good match’ or less. Now I think they’ve changed something again, because when I went back in this morning I suddenly have not a single good match. They’re all labelled as ‘low match’ and the people I was closely matched to have disappeared off my list altogether.

Ha – checked in ten minutes later and my matches are back! I’m still ‘great match’ with the man with lots of other conditions – I’m guessing it’s geography and age that does it, and I don’t agree with that, in this online world – BUT I do think I’m a good match with some of the people listed as ‘good matches’, so I’m feeling a bit more encouraged than I was!

Of course one major thing is that you have to fill in quite a lot of stuff in quite a lot of detail to really see how close a match is – so if you do sign up, be prepared to be bothered or it won’t work for you!

Hairspray?!

January 20, 2014 at 11:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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Something odd’s been happening lately. Several times I have suddenly smelt (and even tasted) hairspray – and once or twice it’s been a taste sitting at the back of my mouth/throat for hours and hours. The first time it happened I assume my colleagues (aka the junior penguins) had been drastically overusing the stuff,  although neither of them looked lacquered (!) but the following day I woke up with the same thing, so I figured I couldn’t blame them after all.

Then it went and I thought no more about it for a few days … and then it came back! At its worst it’s really very unpleasant indeed – it makes everything taste slightly odd, even put me off my coffee for a short time, which is unheard of!

And then it went again.

I can only think of two serious possibilities for what might cause this, given that I don’t own any hairspray and it’s definitely not the JPs’ fault! One is a bit gross, so GROSSNESS alert, skip the next paragraph if you don’t want to be ‘grossed out’.

OK, here goes – I’m just getting over a nasty bout of sinusitis – and part of that is (or can be) having blood and puss form in the sinuses which then has to … erm … find a way out! The way out is either via the nose or down the back of the throat … and in my case (gross bit) it was doing both! Now blood has a sort of metallic taste that could, I feel, be confused (especially in my naturally confused state!) with the metallic smell/taste of hairspray. Of course you may have never tasted hairspray – lucky you! I’ve managed to ingest a bit now and then over the years when using it!

OK, that’s the gross bit out of the way. The other, very faint I think, possibility is the methotrexate. The posh name for an unexplained metallic, foul or unpleasant taste in the mouth is Dysgeusia and it has been reported, very rarely, as a side-effect of the methotrexate. However, the little I can find about it SEEMED to suggest that it doesn’t go away, and the only thing that makes it go is stopping the cause – i.e. stop taking the MTX. Well, it’s not THAT bad! I think the MTX has done me a LOT of good, so a bit of a bad taste in the mouth I can live with. Then again … it may be nothing to do with it anyway.

Needless to say, I won’t be popular with our stressed NHS doctors if I make an appointment and say ‘I’ve got this funny taste in my mouth…’ so I haven’t bothered. What I will do is see how thing are tomorrow morning, given that I take my methotrexate tonight. I THINK it’s been worst on Tuesdays the last couple of weeks, but am I just imaging that? I’ll find out tomorrow!

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?

Happy Holidays to all!

December 24, 2013 at 10:17 pm | Posted in Uncategorized | 2 Comments
Happy Christmas

Happy Christmas, belated Happy Chunukah, Happy Yule, Happy ‘Winterfest’ or just have a nice break … if you’re having one!

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.

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