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?

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 …

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.

‘I can see clearly now, the vague has gone!’

August 29, 2013 at 9:39 pm | Posted in Me | 6 Comments
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(Apologies to Johnny Nash!)

I’m on hydroxychloroquine, which means I’m supposed to have an eye test every year – but I forgot and the optician forgot to send me a reminder!

Then a vague concern that my eyesight might not be as clear as it ought to be, combined with being unable to remember when I had my last eye test made me go and check with the optician, who is handily just down the road from work.

And the outcome is – I have glasses – first time ever – for distance vision i.e. basically driving. It’s slightly concerning (to me, but not to the optician, so it must be OK really) how much clearer things are, considering I only had the vaguest inkling that I might have a problem, and especially considering that two years ago (my last eye test) I didn’t have a problem! If I look at things without the glasses they don’t appear blurred – but then I put them on and they’re suddenly incredibly clear!

I suppose these things just creep up on one – the eye-sight deteriorated pretty gradually over those two years, and it’s only a very light prescription I have now, but the difference is quite extraordinary.

I’m getting used to them – or at least I’ve now stopped having hysterics every time I catch sight of myself in a mirror or shop window!

Hip hip hooray!

August 13, 2013 at 8:45 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’

Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’

Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!

The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!

 

Blood test delay – well handled?

July 19, 2013 at 11:47 am | Posted in Me | 2 Comments
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I went into the surgery for my blood test yesterday. I got there in good time and signed in, waited until ten minutes after the appointment was due and went up to the desk to make sure the auto sign-in had worked properly. The receptionist asked who the appointment was with and I didn’t know as it wasn’t my usual nurse, so she found me by my name and assured me I was signed in. I then asked her whether I was the next patient and she said there was one person in front of me.

While not delighted, at least I knew there was a delay so I went and sat down again. Ten minutes later another receptionist called out ‘Is Pollyanna Penguin here?’ and I went up to the desk. It was now 20 minutes past my appointment time. She explained that the nurse I should have been seeing wasn’t in and that another nurse had hoped she could see both sets of patients but was (understandably) running late. She assured me I would be seen if I wanted to wait, but said that otherwise they could re-book for a week’s time, if that was OK.

This is a vast improvement on the way things ran a year or so ago, when the receptionists would just let you sit there all day, and if you went up to ask what was going on they didn’t know! I’ve had a couple of bad experiences like that in the past, so I thought this was a pretty good way of handling it.

The only thing is … when I went up to ask after ten minutes they knew the situation, so I wish someone had thought to tell me then. I know, I know – it’s only another ten minutes, right? But still, I had a busy day yesterday and I could have spent those ten minutes more productively at work than sitting in the doctor’s waiting room playing Angry Birds and feeling like one too!

But what if …

May 17, 2013 at 8:47 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 13 Comments
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So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?

Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.

So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.

So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.

So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!

Well, back to crossing those flippers and hoping it never comes to that!

Healthline Blog Awards – never mind me, vote for Rheumatoid Arthritis Warrior!

January 11, 2013 at 6:03 pm | Posted in Me, rheumatoid arthritis (RA) | 1 Comment
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Good news – there’s a rheumatoid arthritis blog currently in the top FIVE of the Healthline blog awards. The bad news? Well, I could say, ‘It’s not me’ but hey, I post a few times a year and witter on about biscuit making, so I think Kelly at Rheumatoid Arthritis Warrior, who really does work at making an informative and blog for suffers, and increasing awareness of RA, deserves the kudos more; no, the bad news is it’s not number one … yet. So please do go and vote for her!

And do bear in mind that while you’re at it, you can vote for me too … and all my online ‘mates': Wren and Andrew and Carla and all the folks in my blog roll; because you can vote for as many people as you like each day, although you can only vote for an individual once a day!

And if you have an RA blog with a handful of votes, like me, and you know you’re never going to get to where RA Warrior is, why not get behind her as well and get your readers voting for her … or her and you! :-)

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