National Arthritis Week – 12-18 October in the UK

October 3, 2015 at 4:57 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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It’s National Arthritis Week in the UK from 12-18 October and Arthritis Research UK are running a ‘story wall’ in its honour. My story (in 250 characters, which is a bit mad, but there you go, we’re the Twitter generation!) is up there somewhere on the wall – or will be soon. Why not go and put yours up too? You can see the wall here and put your own story up here.

10 million people live with Arthritis (in all its various forms) in the UK and Arthritis Research UK do a great job in supporting us, so I’m very happy to support them with their efforts for the week. They not only fund research, but also provide patient talks around the country so that we can find out what’s happening research-wise. Hubby and I went to a very interesting one a couple of months ago given by my very own rheumatologist – not that he recognised me – after, I haven’t had a six-monthly appointment for nearly two years, as the hospital keeps cancelling them – but that’s a whole nuther story! Posting about the stuff he was talking about is on my very long list of things to do!

I got latched on to by a very pleasant lady who tried to assure me that all I needed to do was take cider vinegar and honey to be cured. Strange that she was there and very clearly not cured, and yet still spouting this stuff. Funny, things people.

Anyway, I digress – please support Arthritis Week – there’s loads and loads of stories up on the wall already but the more the merrier, and it all goes towards helping arthritis research.

Knee flare

September 25, 2015 at 8:30 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Poor neglected blog! It’s been neglected till now because RA has been under control and I’ve not had much to say, and now it’s going to be brief post because I’m typing on the iPad mini, which ain’t easy when you’re  used to touch typing!

So so why not use the PC? Because I’m having a great big flare in my left knee and can’t comfortably get my leg under the desk! This also means I can’t work of course! Very frustrating! It started Monday night, I had Tuesday off work and went back Wednesday when it was quite a bit better. Probably a mistake as yesterday (Thursday) it was a whole heap worse.

i phoned the doc and spoke to, I think, a locum.

‘What can I do for you?’

‘I’m having an RA flare in my knee and it’s about the size of a football.’

‘Oh?’ <slightly sceptical voice>


‘I do have RA! Had it about eight years!’


‘oh, right, yes, of course …’

Oh good, he’s finally read some notes!

‘Well’ says the doc, ‘What do you normally do for that?’

‘You give me a prednisolone taper.’

‘Ah, when did you last have one?’

The honest response would have been ‘Duh, I dunno!’ I’m just hopeless with dates! I know it was a while back so I said ‘Maybe a year ago?’ For all I know really it was 2 or 3!

‘i can’t find it on the system.’

‘good grief! I’ve hardly been in the surgery this year! There can’t be that many visits to look through!’

‘Oh, I’m not in that bit. I’m looking at medication and all your monthly repeats are coming up of course.’

I bit my tongue and didn’t say ‘Well go into that bit then.’ I didn’t want to antagonise a man who was (hopefully) going to give me drugs!

‘Hm, I can’t find it. Do you normally start the taper with 4 or 6 tablets?’

durr… I dunno! ‘Four? … Maybe? … I think … Not sure.’

At this point I expected something on the lines of ‘you’d better come in and I’ll look at it and make an informed medical decision’. Instead I got, ‘Well let’s try four. I’ll send the scrip over to the pharmacy for you.’

I have to say he was very pleasant and I’ve shortened the nice chat we had drastically due to iPad typing, but still unsure whether to be grateful to doc for listening to and believing (eventually) the patient, or horrified  at the laissez faire attitude! As it saved me a very uncomfortable trip to the surgery I think I’ll opt for gratitude! Now I’m just sitting with my leg up and hoping the steroids do the trick!

I’m missing an art exhibition I really wanted to see, a workshop on identifying dragonflies and possibly a painting class, over the coming weekend, but I’m catching up on lots of reading and doing some crochet, which I’ve not done for ages, so there are good things ….kinda!

The last few weeks – mostly ‘pants’ but some great highlights!

May 3, 2015 at 12:48 pm | Posted in arthrits, Barcelona, crafting, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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It all started on Good Friday (aka the first day of passover). I had to work all day and when I got home I had a slight cough – but hey, I often have a slight cough. I thought no more of it and went of to dinner with my mum and visiting bro and SIL (aka Mr and Mrs Mooseface). A very nice dinner it was too. We got home and I felt cold … then I felt REALLY COLD! Eventually, when huddled under two duvets, wearing a dressing gown and thick bed socks and with a hot water bottle cuddled up to me, I thought ‘Hmm, I wonder if I’ve got a temperature?’ I did. it was 101.2 degrees – pretty high. The next day was a big Passover celebration with a bunch of cousins and I missed that completely! NOT HAPPY!  ‘Heck!’ I thought, ‘we’re supposed to be off to Barcelona in just over a week – I hope I’m OK for that.’ It turned into a very nasty bug with a sore throat, cold, stomach problems and aches, similar to flu.

To ‘cut stories long and short’ as a South African coach driver I once met used to say (a lot, which is why it’s stuck in my head for over 30 years!) I wasn’t – and neither was hubby, who trumped my temperature by going up to 102.2 two days before we were due to fly – by which time I had also contracted sinusitis.

We didn’t go!

(Mind you – if we’d had travel ‘fun’ like Mr and Mrs Mooseface did on their recent holiday, maybe we were better off staying at home!)

I’d been looking forward to this trip for years – literally years – since I was last there, in fact. A bit of a disappointment then (says Penguin with true British understatement). I was also off work for the whole week before our ‘holiday’ which caused some problems, as you can imagine. I was determined though that as a) I still felt pretty rotten and b) I was darned well going to have a holiday, I wasn’t going back in my ‘holiday week’ so I didn’t … which caused more problems. At least the boss couldn’t tell me off ’cause I’m self-employed.

Toward the middle of what should have been our Barcelona trip, hubby started to feel better, and my antibiotics for the sinuses began to work, so we decided on a couple of days’ holiday on the north Norfolk coast – ’cause neither of us felt up to driving very far. I found a hotel on TripAdvisor in Old Hunstanton which was really lovely and the weather couldn’t have been better – in fact weather-wise we could have been in Barcelona! The hotel was very quiet, had excellent food and a bar open all day, and was less than ten minutes walk from a rather lovely beach – just right for a pair of old convalescents! It did us both the world of good!

Unfortunately it ended all too soon (although Enormous Cat says it went on far too long*) and we had to come back home. I did manage to get some crafting done at the weekend though, before I went back to work – I nuno felted four scarves, so pretty pleased with myself there! (No photos as yet, I’m afraid!)

All this time the RA had been pretty much dormant, quiescent or however you’d like to describe it, which was generous of it given everything else that was going on!

Then back to work – oh boy was that hard after two weeks away – and we are SO busy, and stupid things kept happening, mostly my own fault – or at least the fault of the fact my work-brain was temporarily disconnected! That situation (both the business and the disconnected work-brain) hasn’t really resolved over the last couple of weeks!

I have got very into my nuno felting though and then I discovered ‘paper fabric lamination’ here at Felting and Fibre Studio. A whole new world of nuno felting potential! Unfortunately I also discovered that the RA’s back … it’s probably not even ‘flarette’ stage right now but it’s niggling away and making me tired and somewhat achy, not helped by the fact that the beautiful weather we had briefly has now gone and it’s dark and gloomy out there again!

Bee amd flower

Bee and flower – the bee is a chocolate wrapper and the flower is rag paper – note to self – don’t use rag paper again – it’s tricky to scrape off what you don’t want!

Ammonites 2

Ammonites – the Ammonite shapes were Japanese lacy paper. The colour is brusho wash. The fabric they’re felted into is cheesecloth and yellow and gold wool along with some silk strands are nuno felted into it

I have just about (with many small breaks for coffee and a sit down!) managed to make a couple of small samples with paper fabric lamination and nuno felting (see above) – and I reckon that this could easily be incorporated into scarves and other clothing and would wear just fine – even the metallic bits – see the bee in ‘bee and flower’- so that’s quite exiting. (Well it is for me – but I’m a bit odd like that!)

Felting, however, is NOT kind to RA joints! I’ve been working on ways of minimising the problems, like using a sander (noisy!) and a tumble drier (not enough control) so I’m back to just doing it in small spurts and in small pieces! These two together are only a about 10 inches across and 6 down! When I feel better I’ll try it in some silk chiffon and then maybe make a scarf or two incorporating some fabric paper laminated features.

It’s not just chronic disease – it’s just that we have to put up with it more often!

March 24, 2015 at 11:49 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me | 1 Comment
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I was chatting in the kitchen at work today with a lass who works in the same building. She had an accident at the weekend and is hobbling around on crutches. As an active, sporty person she’s feeling very frustrated – who wouldn’t be – but I was slightly amused (in a sympathetic way of course) at her frustration with losing her independence. I offered to carry her coffee down the corridor for her and she said no, she’d manage. ‘I hate being a burden’ she said, ‘I’m normally such an independent person and everyone’s being so kind and helpful and I’m having to rely on lifts and things for everything, and of course I’m grateful but  I HATE IT!’ I do so know the feeling – although I’m incredibly lucky with my RA that it comes and goes so must of the time I can remain independent, but when I can’t that continuous feeling of pressure (entirely internal, not from the people around me) to show gratitude, and that feeling of being a burden is just horrible! I don’t think I can explain that feeling to anyone who hasn’t experienced it – but I know many of you reading this will have experienced it too!

Then she said, ‘And everyone’s got an opinion! “Oh, you’ll have to stop doing that now this has happened” and “If you’d been wearing stronger body protection …” and “You shouldn’t have gone out on a day like that” and “If only you’d thought to do this first …”‘ In fact it was one of those unavoidable things – an ‘act of god’ if you like – something spooked her horse and she came off it. It happens. She wears body protection, she was in a lesson and it wasn’t that bad a day or the teacher (and she herself) would have cancelled. But yes, everybody has an opinion!

‘Oh, eat a spoonful of honey a day and your arthritis will disappear’ – ‘Oh, if you lost  weight you’d have no arthritis problems’ – ‘Oh, my mother took a whisky every night and lived till she was 122 without any arthritis symptoms, maybe you should try that’ … Doesn’t that sound familiar? The being a burden thing and the everyone has an opinion thing are two things that I think bloggers on RA and chronic disease blog out rather frequently, but it turns out it’s not just ‘us’.

But at least horse lady will get a full recovery (or I certainly hope so) and no doubt ‘look back on this and laugh’ whereas we folk with chronic disease are a bit more stuck with it! Nevertheless, in true Pollyanna fashion, I’m still grateful (and without that burdensome feeling!) for the fact that my disease is mild and for all the things I can still do … and now I can add to that the fact that I’m very unlikely to be thrown off a spooked horse anytime soon, since I’m very unlikely to be on one!


To flare or not to flare – that is the question

March 17, 2015 at 3:01 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
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I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!

Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …

That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!

Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!

Exercise oops!

February 12, 2015 at 10:20 pm | Posted in arthrits, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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Well, after a food-laden Christmas and New Year, I finally got round to some serious dieting and an exercise plan about three weeks before my (inevitably food-laden) birthday!  Having had a fabulous weekend away in Ely and Cambridge, staying in the delightful  Poet’s House Hotel and eating their delicious dinner and delicious breakfast (scrambled eggs and smoked salmon on brioche, plus fruit juice, coffee, cereal, bits and bobs … no need for lunch then!), I thought I’d have just a nibble at lunch time. We popped into a coffee shop in Cambridge and I chose what I honestly thought was a small, and fruity, cake type thing so I could say ‘well at least it was fruit’ – only it turned out to be cherry crumble and came with ice cream. Oops.

So anyway, the point is that I decided I’d better get straight back on the wagon. No problem with the diet – right back into the healthy food as soon as I got home, helped by my birthday present from my friend Debbie – a healthy food hamper! The exercise was a bit more of a challenge though. I try to get a walk every lunch time but this week I’ve managed it precisely once. OH DEAR! Today my excuse for not going, apart from being incredibly busy at work and it being grey and gloomy and COLD outside, was that I was going to do my 20 minute embarrassing exercise video thing this evening.

Well of course I got home and didn’t want to do the exercises – so I thought ‘JUST GET ON WITH IT! If you stop, you’re done for!’ So I just got on with it. (Bet you weren’t expecting that, were you?!) I actually got through my 20 minutes (20 minutes and 40 seconds if you’re counting… I was) and was very pleased with myself that I’d done it, although not at a good, high energy level, BUT … my feet felt like lumps of lead (semi-molten) and my knees felt like lumps of wood and the rest of me felt … well, I’ve felt better. Rather disappointing since the last exercise I did, on Saturday morning, went absolutely fantastically and I felt great afterwards – if a little sweaty!

Now, four hours later, my feet still feel like semi-molten lead and my knees feel like … well, maybe balsa rather than mahogany but still not knees … and I’m thinking ‘OOPS – I think I might be going into a flare’ … in which case forcing myself to exercise probably wasn’t the cleverest thing to do after all … but hey, who knew?! I was fine early today – it’s just sprung itself on me.

Hopefully it’ll be one of my famous ‘flarette’s’ and I’ll be all right after a good night’s sleep. Anyway, having just re-read my last blog, I feel a whole lot better already. Today certainly isn’t as bad as that day was!

As things have been so good over the last few months I’m not taking any anti-inflammatories at the moment (with the blessings of my consultant), but I can always take some if need be (also with blessings of consultant), so that should sort me out if it doesn’t sort out naturally.


December 12, 2014 at 12:03 pm | Posted in arthrits, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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Well, I meant to write this post about biosimilars weeks ago, but alas, I came back from London and fairly quickly went down with a really bad cold, which I’m still getting over now! It was bad enough, combined with the methotrexate/immunosuppression, to require antibiotics for the secondary infection and it hit chest and sinusses at the same time, so I’ve been feeling pretty poorly!

Luckily Clare at NRAS had asked to write a brief report about the conference for them – on slightly more serious lines than my last post, and I did that pretty much straight away after coming back, before the cold hit, and that included something about the biosimilars, which I’m going to reproduce here. So here we go:

The next talk I attended was ‘Biosimilars: realising the opportunity for the NHS and patients’. Biologic patents are soon to run out. Biosimilars are biologics too, but they are designed to be as similar as possible to the molecules of already successful biologics, reducing the need for as much expensive primary research as went into the original biologics. As they are not identical, and as these molecules are extraordinarily complex, they will still need to go through, and some are already going through clinical trials, because, as Professor Peter Taylor said in his talk, ‘minor structural differences can have disproportionately large effects in patients’.  However, there is a lack of education around biosimilars both among patients and clinicians, not to mention commissioners, so their introduction into the NHS could be a complex matter.

At the last minute there were no patients speaking in this talk due to some obscure ruling to do with the pharmaceutical company involved only speaking on panels with medically trained people.

First, Professor Peter Taylor, Norman Collison Chair of Musculoskeletal Science, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, gave a very clear and concise outline of what a biosimilar was. Carol Roberts, PresQIPP Director on NHS involvement in biosimilars was keen to reassure that ‘value’ was based on outcome and not just on price, although biosimilars could be a huge saving to the NHS, £3.8 million. (Actually given NHS budgets that didn’t sound that huge to me, but every little helps!) People with RA on biologics now will probably be pleased to hear that the intention at the moment is to only put new patients onto biosimilars, not to take people off biologics that are working for them and move them onto the cheaper drugs. Janice Mooney, Senior Lecturer in Primary Care, University of East Anglia and senior Rheumatology Nurse Practitioner, pointed out that all clinicians need to be educated in biosimilars, not just patients and consultants. Given that patients may only see a consultant once a year (or less) this is obviously essential!

There was some concern among patients in the room about safety, although to me biosimilars do seem like the logical next step in medication of RA – another audience member pointed out that there was a massive trust issue between patients and the NHS with a feeling that the NHS always went for price above effectiveness, which led to a feeling that if something was cheaper it couldn’t be as good. One person even wondered if there could be a backlash against these similar to that of GM foods a few years ago, if the press wasn’t properly educated. Janice Mooney responded that this was a key area where education was required. David Taylor pointed out that clinical trials were not enough to guarantee safety, due to rare risks, because of the small number of people involved in trials, so that safe and responsible introduction of the new drugs was also essential.

From my own persona point of view, and of course this didn’t get added into my serious report for NRAS, I’d just like to say ra ra ra, go biosimilars … especially as i might be needing them in a few years’ time!

We’re off to see the Wizard … or at least to Future of Health Conference 2014

November 20, 2014 at 4:15 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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I’m on my way to the bright lights, big city of London for the Future of Health Conference 2014. And if Simon Stevens can pull off his Five-Year Forward View then he will indeed be a Wizard – and not just a Wizard of Oz.

The plan has a lot of good things. One is a focus on prevention – something really fairly new to the NHS if they’re going to take it seriously, not just say ‘Do you smoke? Do you want to stop?’ when you go for your flu jab at the GP, so that they can claim their smoking prevention bonus!

Then there’s a focus on patients gaining control of their own care. Sounds great – but what does it actually mean? Maybe I’ll find out on the train down as this is my planned reading matter.

Then they want to break down barriers in the NHS e.g. between GPs and hospitals, doctors and social services etc. Well I don’t think that’s anything new on the wish list front – it remains to be seen whether they can actually change deeply embedded cultures to get it done!

GPs are going to be given the option to combine with other specialists, e.g. mental health and social care, to form ‘Multispecialty Community Providers’. Hang on – isn’t this just the old consortium idea under a fancy new name? Sprinkle a little magic name dust over an old idea and see if it blooms into a beautiful new service.

There’s other stuff too – if you’re interested go and read my planned reading material link above – but those are the bits that resonate with me.

This tweet by the King’s Fund, an independent charity focussing on improving UK healthcare, focuses on where the money’s going to come from – always  a good question in the NHS, and even more so in this economic climate!

Part of the new plan involves ‘managing demand’ and while I’m not sure  I agree with everything in the link below, there are some good points, and some points I haven’t quite got my head around yet.

I can’t help thinking managing resources (not just human resources) and managing burnout should also be high on the agenda.

This is certainly not just an American issue. It’s something we patients see all the time. It’s also not just in doctors. Some of my previous posts about nurse practitioners and even physiotherapists would suggest that it’s ‘health care professional burnout’ that needs to be a concern, and is ladling on more models and targets etc. actually going to help with this? I doubt it.

And this from the King’s Fund again:

It’s suggesting that the NHS has too many doctors and not enough support staff including nurses, considering that the new plans focus on integrating more and using nurses for EVEN MORE stuff. I’m ambivalent about whether that’s such a great idea anyway, but if it’s going to happen then how could the NHS have predicted and trained the right number of doctors/nurses given that a) some bright spark comes in and shakes up the NHS every 3-4 years so no one can plan anything anyway and b) medical schools aren’t going to stop training doctors because they’re funded on how many doctors they train …

It makes my brain hurt! I’m so glad I’m not Simon Stevens. Good luck Mr Wizz. See you on Friday at the Future of Health Conference. 



A bit of an update – I can’t believe it’s been so long!

October 15, 2014 at 1:35 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.

It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!

And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!

I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!

And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.

If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:

  • A blood sucker (aka phlebotomist)
  • The lab doing the work on the cholesterol
  • The hospital secretary
  • The surgery secretary who sent out the letter
  • The GP who had to call me back and discuss what we’d discussed three weeks before

‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.

Cutting back on the tabs!

June 13, 2014 at 10:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!

I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.

I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.

Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!

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