Hospital appointment – only 7 months late

November 20, 2015 at 9:27 am | Posted in rheumatoid arthritis, rheumatoid arthritis (RA) | 13 Comments
Tags: , , , , , , , , , , , , , ,

I’ve just had my April hospital appointment – well, it was supposed to be in April – then they moved it to June .. then they moved it to August … then they moved it to September … then they moved it to November… but this time it didn’t get cancelled. Right, I thought, I’ve seen no one at the rheumy department in 13 months, I’m going to make a LIST of things that I need to ask about, ’cause my memory’s shot. I know doctors hate lists but when you have to wait 13 months for an appointment you don’t want to forget anything, right? Right! Shame I forgot that I’d made the list then, and consequently forgot to ask about the dry mouth, although I think I covered everything else… except memory problems of course. I don’t think a rheumy clinic is going to be that interested in my forgetfulness anyway!

Everything else was more pain and stiffness in the hands and feet than previously, two nasty flares in my knees over the past year and a lump on my finger.

For the first two, my methotrexate has gone up to 20mg from 17.5mg. The nice boy (sorry, young man – I’m getting old, all the registrars look like children to me) was slightly horrified that I started off eight years ago on 5mg (or possibly 7.5mg) as they’re now much more aggressive and he said they’d never start anyone on less than 15mg so really 20mg is nothing. He also said if stomach upsets were a problem them can move me over to a self-injecting pen. I wasn’t too keen on that idea – I’ve only had two or three stomach upsets over the year that MIGHT have related to MTX and it’s possible that none of them did – I have a dodgy tummy anyway!

For the lump on the finger, he said since it was on my left middle finger and I’m left-handed it was probably just where I rested a pen. I said, ‘Who writes these days?! I almost never hold a pen! I type everything,’ to which he laughed, agreed and basically said, ‘Dunno’. It’s not painful and it’s not growing alarmingly so ‘dunno’ is fine for the moment!

The ridiculousness of the DAS score was brought home to me yet again. As the nice boy put it, ‘You might as well be amputated below the knee as far as that’s concerned’ and one of my main problems is feet! Daft! It also included a rating of how has the RA been THIS WEEK. Who gives a monkeys about this week – I haven’t seen anyway for 13 MONTHS! He took that on board too, bless him, and although I scored ‘low disease activity’ with four sore joints and pretty good thank you for this week, he accepted that my RA wasn’t under control if I’d had two bad flares this year; hence the MTX increase.

He also said if the appointments started slipping again, I should phone reception and point it out and they’d stop it happening – my faith in reception, on a score from 1 to 10 – zero. Not that I really think it’s their fault – they’re just the front line when it keeps happening and I phone up and say ‘Oy’ and they say, ‘Not our fault,’ which it’s not!

Anyway, I’ve got a nurse practitioner appointment in February – let’s see how much that gets moved – not that I need it in February – May would be more sensible, but I’m hesitant to cancel!!

Hopefully not the ‘new normal’ … and ‘now in other news …’

October 5, 2015 at 4:58 pm | Posted in rheumatoid arthritis (RA) | 7 Comments
Tags: , , , , , , , ,

Well my knee is very definitely better – From being barely able to hobble across the room, one predniselone taper later and I’m almost back to normal – I’m back at work, doing my lunch-time walks again, carrying on as normal … almost. The things is I’m getting twinges in that knee after walks, and I haven’t dared try exercise other than walking yet, and it’s generally more painful and tender than it was – I still have huge tracts of time when it doesn’t hurt at all, I’m delighted to say, but it probably hurts more and more often than it did pre-flare. I don’t know yet whether that’s because things are still settling down after the flare – it’s been nearly two weeks now which is long for me but not long in the scheme of RA things – or whether there’s been some damage done to the knee and this is the way it’s going to be from now on.

Here’s hoping it’s the former!

As to non-RA related stuff, I’m very sad to have to say that ‘Enormous Cat’ died a few weeks ago. We miss him enormously! Well, Hubby and I do. Tiny Cat 2 isn’t the slightest bit bothered! ‘All the more crunchies for me’ I think is her attitude.

On the brighter side, we had a fabulous holiday to Whitby, where we were lucky enough to get a room upgrade in the very nice hotel and had a generally lovely, relaxing time, and, in spite of seriously steep hills, the RA pretty much behaved itself. I did wimp out of a really steep and windy trip up to see a waterfall … but it wasn’t as though we’d planned that anyway. We just stopped in a village cafe for a coffee, got chatting to a couple and their very friendly (and perpetually hungry dog) and he said ‘Have you been up to see it yet?’ And we said ‘See what’ and it turned out there was a fairly famous waterfall there. I did manage to see the wonderful Whitby Abbey, which I had been really wanting to visit for years.


The Yorkshire Moors were magnificent, and yes, we did have some good weather too, in spite of the Abbey photo above with the foreboding clouds!


And Castle Howard was deeply impressive … although the only bit I really liked was the Arts & Crafts Chapel – amazing! (The ‘new wing’, built in 17-something, was also nice, but the neoclassic earlier part of the house I personally found rather cold, although Hubby loved it!)


All in all a very fine holiday – but could have done with another week!

National Arthritis Week – 12-18 October in the UK

October 3, 2015 at 4:57 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , , , , , , ,

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
Tags: , , , , ,

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!

Dry Mouth Can Lead to Tooth Decay

August 12, 2015 at 11:35 am | Posted in rheumatoid arthritis (RA) | 6 Comments
Tags: , , , , , , ,

I’m on my own in the office today, but at least things have quietened down a tad – both work and flare! I’ve been flaring for the last couple of weeks, somewhat on and off but more on than off. On top of that last week I had THREE dental appointments (each at an hour minimum out of my working day, including the travel) to FINALLY finish off this root treatment that’s been going on since the time of the accident. 

On the bright side, the root treatment is DONE! On the not so bright side, in spite of good dental hygiene, decay has been much faster than the dentist would have anticipated and he blames (‘without a doubt’) dry mouth caused by lack of saliva production, since saliva protects teeth from decay. Who knew? Certainly not me! I knew I had dry mouth, often worse at night time but bad in the day too, and on and off just like flares are on and off, but I had no idea that it could cause problems other than me thinking, ‘I could do with a sip of water’.

There are two possibilities I can think of – and no doubt some I haven’t thought of too! One is that I have secondary Sjögren’s Syndrome, which often associates with RA and causes dry eyes and mouth – I’ve not bothered to ask anyone about this because I don’t have dry eyes, and as far as I can tell the test for it, at least in the NHS, is an eye test so I’m sure I’d come out fine! The other possibility is that the Lansoprazole that I take as a stomach protector, to protect against the side effects of the other things I take for the RA, has a number of potential side effects, bizarrely including all sorts of stomach problems (seems bizarre to me for a stomach protector, but there you go) and also DRY MOUTH!

I may be wrong but I can’t imagine getting much out of the GP on this so if I ever have another hospital appointment (the last one having been postponed umpteen times by the hospital) then I will mention it there.

If anyone has any other thoughts or theories I’d be most interested to hear them!

NICE is as blinkered as ever: nothing has changed since 2010

June 25, 2015 at 6:34 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , ,

In January 2010 I ‘reported’ that NICE were refusing to consider treatment of early RA with biologics because one had to ‘fail’ on two other DMARDS first, which would take a minimum of six months, more likely a year. NICE (amusing standing for National Institute for Clinical Excellence, actually have very little interest in clinical excellence; their job is to stop the NHS ‘spending too much’ on drugs etc.)

Now, five-and-a-half years later, after threatening to take biologics away from RA patients altogether because they weren’t ‘cost effective’, NICE has kindly decided to leave things as they are for the moment, according to to a joint press release from NRAS, Arthritis Care and the British Society of Rheumatology (BSR), which you can read here on the BSR website (and also on the NRAS and Arthritis Care sites).

I was pleased to see that Professor Simon Bowman, the President of the BSR, is saying pretty much what I was saying five-and-a-half years ago … because there’s a chance that people at NICE might actually listen to him! He says, quoting the press release:

‘It is false economy not to treat patients with moderate disease with biologic therapy when standard DMARDS fail, as these patients will be higher users of healthcare resources. These patients will require more attendance to primary and secondary care, and are more likely to develop co-morbidities such as osteoporosis, heart disease and have more surgery.’

The press release continues with more things I was saying back then: ‘They are also much more likely to lose their jobs, causing financial hardship […] The personal costs to the individual, the NHS, the impact on the rest of their family and the direct cost to the exchequer in lost productivity and benefits claims is massive.’

Judi Rhys, Chief Executive of Arthritis Care, added ‘NICE does not take account of costs such as reduced hospital bed days or the benefit of people getting back into work. We believe those with moderate RA require better access to these drugs. Not only will it improve lives, but it also makes economic sense.’

Here here! It’s good to see the charities fighting back in language that NICE might understand! Of course it won’t alter the problem that the NHS is completely ‘siloed’ from the Department for Work and Pensions who deal with benefits etc., social services etc. So as far as NICE is concerned, as long as the NHS is ‘saving money’, the fact that there are huge costs to individuals, businesses, the DWP etc. is really irrelevant.

I fear that holidays are doomed this year – mine anyway!

June 23, 2015 at 6:47 pm | Posted in Barcelona, Me | 4 Comments
Tags: , , , , , , , ,

After the Barcelona fiasco earlier in the year (we were supposed to go and we both went down with something fluey, which I topped up with sinusitis), I’d decided to treat myself to a little break this week – a two-day ‘painting with coloured pencil’ course in Wiltshire. I can’t tell you how much I was looking forward to it! (Lots!) I set out at a bit after 9 o’clock this morning, and had planned my first stop to be Anglesey Abbey near Cambridge. I’d planned in three main stops on the way down – fun places to visit rather than just a roadside café or services, and that was the first. I was only seven minutes away according to the Satnav, at a rather odd road junction where the left-hand lane takes you on to the A11 and the right-hand two lanes remain as the A14. I assume what happened next was that that the lorry I was driving past, me in the middle lane and therefore left-hand lane for the A14, he in the left-hand lane for the A11, suddenly realised that oops, he wanted to be on the A14 … so he pulled over. I couldn’t swear that he actually hit me – I know I saw him coming and panicked and I know I lost control of the car – and I also know that I wasn’t speeding because I’d just checked my speedo. I think he must have actually hit me because there is damage to two sides of the car – the left-hand side, which he presumably scraped and pushed, and the right-hand side where I hit the central reservation. I then spun and bounced back to the left-hand A11 lane where I pulled to a stop and put on my hazard warning lights. After a few minutes I realised that I couldn’t safely pull off the road from this point and I couldn’t easily assess the damage … and cars were having to pull round me causing chaos to all the traffic in the area. So having ascertained that there wasn’t smoke coming out the bonnet I waited for a break in the traffic and pulled out … thumpty-thumpty-bump … OK, this isn’t good! Double flashers back on and drove, so the police told me afterwards, half a mile or so up the road until there was a safe stopping place big enough for me and a breakdown van.

Apart from shaking a lot I thought I was fine so priority number 1 – ring my breakdown cover! That sorted – text hubby. Then phone the police. I was just about to call the police when hubby phoned me and a moment or two after that, having reassured him that I was fine, I said, ‘Got to go! The police have arrived.’

A very nice copper came over and said, ‘Was it you that called to say that you’d hit the central reservation?’ I said it wasn’t – that they’d been next on my list, but that my priority was the RAC! He laughed and said that was probably an indication that I was OK!  He said he’d secure the area and put cones and warning signs out and then come back to find out what had happened. Before he’d finished, a very short time later, and ambulance pulled up. I told them I was fine but of course they had to do their thing, check everything and make sure. They were absolutely lovely! A very different experience to the only other accident I’ve had (other than someone reversing into me a while back – no ambulance needed!)

They checked for neck injuries by the side of the road, although as they agreed, I’d already walked out of the car and waved at them when they arrived, so not a lot of point saying ‘Don’t move your neck!’

Then I got on board and they checked my blood pressure (‘Slightly elevated, love, but better than mine!’) and took a blood test (presumably for alcohol and drug testing). I asked for some water. ‘’cause we can love – or would you prefer vodka.’ I said I would but I thought the police might not be too impressed if they breathalysed me later, so they gave me water. ‘Any illnesses?’ I mentioned the RA. ‘OK, but no strokes or heart attacks?’ ‘No.’ ‘No asthma, diabetes?’ Nope. ‘No amputations?’ ‘Actually this arm’s false’ I said with a grin. ‘Hmm,’ he said, ‘not sure how we’re getting blood pressure from it then!’

Then he checked various things, eyes, movement of limbs etc. to ensure everything was fine. All seemed very thorough – the only thing missing was a nice cup of coffee! (I was mighty grateful for the water though!)

‘Let me be the first to say,’ said the ambulance man, ‘and believe me I won’t be the last, the important thing is that you’re OK. The car is only a lump of metal and it’s done its job in protecting you, and nobody else was involved, so it’s all OK.’

I wanted to say, ‘Of course it’s not all OK! Yes, that’s the most important things, but my holiday’s screwed AGAIN, my car might be a write-off, I’ll have to go back to work tomorrow, I’m going to have to tell everyone endlessly about this, I wanted to go on my painting course and basically I’m FED up,’ but I just agreed pleasantly. He’d been FAR too nice to be grumpy with!

Oh boy was he right though about not being the last person to say it!

They took the various paperwork details they needed and had a general chat, all very relaxed, and then the policeman came and joined us, having closed the lane I was in with cones etc. He was also very relaxed , took some details and asked what had happened, wrote a short ‘statement’ and got me to sign it. ‘At least you’re alright though, that’s the important thing.’ I bit my tongue. Then a colleague of his arrived – knocked on the ambulance door, poked his head round and asked my name. ‘Oh good – it is your car then!’ Then he saw his colleague and they had a bit of a chat and the one in the ambulance got out. Then hubby rang again – nice ambulance men let me sit there and talk to him, and once I’d done that they said they were happy for me to leave, ‘Unless you want to go to hospital. We can take you if you want.’ NO THANKS! I spend enough time there as it is, thank you very much!

Then back out to the road side, by which time MORE police had arrived – first policeman, first policeman’s colleague and now some ‘traffic police’ who probably patrol the A14 as a full-time job as it’s a notorious road for accidents!

Both of the ‘ordinary’ police and one of the traffic policemen commended me on moving the car on from the original accident site – which was lovely because having done it I was thinking, ‘Oh dear! I expect that was a bloody stupid thing to do. I shouldn’t have moved the car.’

One of them came over and said, ‘I’m really embarrassed to have to ask, ‘cause you’ve handled everything brilliantly and you’re clearly completely sober, but I’m afraid I’ve got to ask you to take a breathalyser test.’ I assured him it was no problem … like I had a choice, but of course it was no problem! ‘I have to ask you … have you had an alcoholic drink in the last 20 minutes.’ ‘Not unless what the ambulance men told me was water was actually vodka!’ You always hear people saying, ‘For gawd’s sake don’t try making jokes with the police – it just makes things worse’ etc. but he was laughing too so that was OK! Of course the breathalyser came out with a zero reading. (I should think so too!) ‘May I present you with this tube you just blew into a souvenir of the event?’ I thanked him prettily and said I’d treasure it. Then he said, ‘At least you’re alright though … and no one else is hurt. The car’s …’ etc. etc. My tongue was starting to hurt from all the biting.

They told me there was CCTV on the road … but it wasn’t looking in the right direction at the time – of course!

I couldn’t remember who my insurance company were, having had the fiasco with Churchill last year and changed companies, so the police very kindly looked up all the details for me and gave me the insurance company, the policy number and the number to phone!

Then the traffic police decided that actually they didn’t really need the cones and warning signs as where I’d pulled off was pretty safe, so they took them all down again! Seemed like a bit of a waste of time, but of course the first policeman, when he started securing it all, hadn’t even got the details of where the accident happened so perhaps thought it was there and there could have been stuff in the road. (Actually, given the state of the car – just about every panel damaged plus two completely flat tyres and one more puncture) I suppose there could have been!  Anyway, the traffic police cleared everything away again and said they’d be off – I felt rather lonely, they’d all been good company and the RAC had just rung to say I’d have another hour’s wait. (This had all taken an hour already from when I first phoned them.)

So I decided I might as well use my time sitting by the roadside wisely! I phoned the insurance company. Well, as you can probably imagine if you’ve ever had to notify an insurance company of an accident, that took a good half hour or so – but they were mostly very helpful. When I first phoned he could obviously here all the traffic noise. ‘Good heavens – are you still roadside?!’ I explained I was but might as well speak to them while waiting an hour for the RAC! ‘Are you OK though?’ I explained that the police and ambulance guys had already been and I was fine. ‘Oh well, that’s alright then, that’s the important thing …’ etc. (Don’t get me wrong, I KNOW they’re right, but it’s a surprisingly uncomforting thing to keep hearing!) He took various details and was helpful and sympathetic except for when he wanted to know what the damage to the car was – at this point I guess he was more reading his script than actually thinking! ‘Starting with the passenger side front, can you tell me what damage there is on the car?’  So I told him. ‘And passenger side back?’ So I told him. ‘And driver’s side back?’ ‘Don’t know for sure – there’s damage but I’m not stepping out into the traffic to assess it for you!’ ‘Oh no – of course not. Sorry! What about the undercarriage?’ ‘No idea – and again I’m not going to go crawling around on the ground to find out!’

When I got off the phone to them, there was a voice mail (if one good thing has come of this it’s that I’ve FINALLY learnt how to pick up voice mails on the iPhone!) from the RAC. ‘Just checking that you’ve been picked up. Our recovery contractor says he’s at the scene.’ WHAT? No he flaming well wasn’t! So I phoned them back and she tried to coordinate with him while I was still on the line. Of course I didn’t know exactly where I was. Hubby pointed out later that the SatNav would have given me a precise location if I’d pressed the ‘help’ button, but I didn’t think of that! Anyway, he finally did find me, having driven past and then had to find somewhere to pull off and come back.

Of course he hadn’t actually SAID he was at the scene – it’s a tracker van – i.e. they can check on the map where he is, and they’d seen him go past and their super whizz technology had decided that meant he’d done the pick-up! Anyway, he was a terrific young lad too when he actually did arrive, and he was able to take me into the garage in Norwich that the insurance had allocated, from where Hubby was able to pick up. We chatted all the way there. ‘Oh well, at least YOU’RE alright … that’s the important thing.’ (Bite, ouch.) He was also telling me all about his hobby – ‘Drifting’. This involves driving high-performance cars around proper race tracks, causing the back wheels to spin and then just ‘drifting’ around the track – competitively! ‘The exhilaration of knowing you could hit the crash barriers at eighty miles an hour is just fantastic!’ To which I replied that I had just had the pleasure of hitting the crash barrier at about 70 miles an hour and it wasn’t especially exhilarating. His cheerful response to that putdown – ‘Ah, but you should try it in a high-performance car.’ Boys!!

The garage were great too – very pleasant and sympathetic and FINALLY, five hours after leaving home and about six after my last drink other than the ambulance men’s water, I got a coffee. What a relief that was. ‘What happened? Oh well, at least YOU’RE alright …’

While I was at the garage I phoned the guest house I should have been staying at. They’re absolutely lovely, and they were able to refund my deposit because they were able to let the room to someone else, so that worked out brilliantly too. ‘Well, the important thing is you’re alright. That’s the way to look at it really – I mean it’s a real shame, but that’s the most important thing’ said the lovely Mary, quite correctly! (Ouch – poor tongue.) I definitely want to still go on a painting course and I’ll definitely try to book them again – they’ve been so helpful!

Then hubby kindly picked me up … ‘Oh well, the IMPORTANT thing is that YOU’RE alright.’ Well, yes, and I’d certainly hope that my own beloved hubby would think so, BUT … at this point I was about ready to thump the next person that said it!

When I got home I phoned my friend Gerbil, who had a not dissimilar experience a few months ago. She gained HUGE brownie points by NOT saying that fateful phrase and giving my tongue an opportunity to cover.

Now the biggest worry, ignoring the fact that YET ANOTHER holiday has been ruined, is that the car might or might be a write off – and if it’s a write off it’s going to be expensive and stressful to find another one! Wish me luck on that score!

Are you tired of not having your fatigue concerns taken seriously?

June 17, 2015 at 9:03 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , ,

Last year I attended the Future of Health 2014 Conference, having applied to be a ‘citizen journalist’ and tweet about the event. There was a big focus there on listening to the patient, and that’s certainly not an isolated event. The excellent Creaky Joints report on the EULAR conference makes it clear that this is a much bigger thing. The thing that especially caught my eye was that FINALLY we’re being listened to regarding fatigue. Fatigue is not correlated to disease activity, a study by the UK’s National Rheumatoid Arthritis Society, which I participated in by answering a survey, found; in other words, I can have mild, controlled RA and still be bloomin’ … erm … exhausted the whole time! There’s a good chance that if you’re reading this blog you’re an RA sufferer, and if you are there’s a very good chance you already knew this, but I’m quite sure most of the medical profession did not – and does not, and it is through listening to patients (or patient-led societies) that they are finding out.

Combine this European-wide event with all the patient activity at the American College of Rheumatology event last year, and the fact that even in my little provincial hospital the consultant was genuinely wanting my opinion on things last time I saw him, and I really do feel there’s something positive going on.

I know it won’t be perfect, I know there are still plenty of medics out there who don’t understand RA at all, and even the specialists will often think what’s on their charts is more important than how we feel, but it certainly seems to be a move in the right direction.

The NRAS survey highlighted in the Creaky Joints report indicated that 66% of patients surveyed (in the UK) were never asked about their fatigue and 79% said it had never been measured. At the moment though, there is no generally accepted measurement of fatigue, so any fatigue studies are a bit hard to take seriously. The next stage should probably be to agree a way of measuring fatigue so that studies can be sensibly compared and conclusions reached.

And now NRAS has another survey – this one is all about how much input or influence RA patients have in their treatment decisions, so if you’re based in the UK and have been diagnosed in the last ten years, go ahead and fill it in; your views could form part of the next EULAR conference; who knows!

You know you’re stupidly busy when …

June 9, 2015 at 11:04 am | Posted in arthrits, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , ,

… the only time you can arrange to meet with your mum to give her some important advice about embroidery is at the doctor’s surgery!

In fairness, it’s partly because she’s stupidly busy too and away for the rest of this week!

We both needed a blood test, and we knew there’d be a bit of a wait, so we met, appropriately enough, in the waiting room! You may remember from my last post, things hadn’t exactly gone according to plan with the blood test attempt, but this time it couldn’t have gone better! When I got there, mum was actually having her test, having arrived a little while before me. It couldn’t have worked out better. As I sat down, she came out from the phlebotomist, we had just enough time to go through her needlework problem and I got called in!

I only waited about ten minutes to be seen and I needed that ten minutes to sort mum out!

Hurrah for the surgery – and I don’t often say that! When things run well, they run really well … a pity they don’t run well a little more consistently!

More blood test trials and tribulations

June 2, 2015 at 3:21 pm | Posted in rheumatoid arthritis (RA) | 1 Comment

Well, I thought I’d cracked the blood test issue – how not to have to wait an hour or so – turn up just before they take the ticket board down at 11am, grab a ticket and wait, hopefully, no more than ten minutes or so. It’s worked the last couple of times …

So I went in at about quarter to eleven and … no ticket board on the wall! Lots and LOTS of people in the waiting room, but no ticket board … o’oh …

So I queued up at reception and said explained that I’d come for a blood test and that I’d understood the ticket board stayed up until 11, and where, pray, were the tickets? It transpired that normally they had two phlebotomists on but today they only had the one, and there was such a long wait they’d taken the board away early as she had to start another clinic at 11! ‘Can you come back tomorrow?’ I said I supposed I’d have to but it was rather awkward as I WORKED, and then I said, ‘But will she be on her own again tomorrow?’

‘Can’t you just come in earlier?’ asked the receptionist. I said that while I could, that would no doubt mean waiting an hour or so, at it had in the past, and since I WORKED I wasn’t willing to do that. ‘When will she have someone else working with her again?’ Blank, fish-eyed stare from receptionist – who has no doubt been cultivating her black, fish-eyed stares ever since she started as a guard-dog – sorry, I mean doctor’s receptionist.

‘Will the other phlebotomist be in tomorrow?’

Blank, fish-eyed stare.

Deep breath. ‘If I come in tomorrow, is it going to be the same situation … ah, or don’t you know? Is the other phlebotomist off sick and you don’t know when she’s coming back?’

‘Oh no – it’s half term – she’s on holiday. She’ll be back on Monday.’

Very deep breath – ‘Why, thank you! That’s what I wanted to know. In that case I’ll come back next week.’

So off I went. I will NOT go back Monday as Mondays are always manic, but I will try Tuesday. I hope I can get a blood test because my repeat prescription is due on Wednesday and if I haven’t had the blood test they won’t give me the prescription! Watch this space.

Next Page »

Blog at | The Pool Theme.
Entries and comments feeds.


Get every new post delivered to your Inbox.

Join 125 other followers