RA Blog Week Day 3: Advice

September 28, 2016 at 2:25 pm | Posted in rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
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I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.

What advice can I offer people who’ve just been diagnosed?  Well, off the top of my head, here goes. I’m sure there are many more sensible things I could have said if I’d been more organised about RA blog week – but this is me!

  1. DON’T PANIC!Perhaps I should display this in ‘large, friendly letters’ across my blog, a la Hitchhikers’ Guide. 
  2. Listen to your doctors and nurses, but don’t assume they know it all. (That’s for them to do and they usually do, but it’s not the case
  3. DON’T PANIC specifically about the side effects in medications. Most people don’t have any side effects. You might be lucky, you might not – but if you don’t try, you’ll never know. I’ve been lucky and had only the most minor of side effects, or none at all.
  4. Get advice from the RA community – local support groups, online support groups (such as Health Unlocked in the UK) and local or national charities e.g. NRAS in the UK, who I have found extremely helpful.
  5. Use what aids you need – and find out what aids are out there that can help you.
  6. Don’t be embarrassed to tell people about your RA and to use aids. Amanda John has written some terrific stuff over the years about dealing with embarrassment – or sometimes failing to do so.
  7. Find ways to deal with people – This can be HARD! Most people will be curious, many will ask stupid questions and even more will offer completely useless advice about their aunt’s cousin’s daughter’s dog who had RA, ate some honey and got better. It won’t help you to give a snappy answer, although it might feel good at the time. (I learnt this the hard way.) At the same time, try to find a quick way of explaining RA – true friends will listen to you harp on about for hours; the more acquaintance-level ones are understandably easily bored!
  8. Read blogs about RA – but remember everyone’s experience is different. Just because Carla, author of the terrific Carla’s Corner, has had to have multiple ops, doesn’t mean you will. Just because Wren has days when she can’t turn a page without pain doesn’t mean you will. But when you want support and advice the RA blogging community is a great place to be!
  9. Pace yourself! This is so hard! Fatigue is a big part of RA for a lot of people. ‘Pushing through it’ and ‘carrying on regardless’ DOES NOT WORK! You need to pace yourself. I frequently refuse to arrange to do something Sunday if I’m already busy Saturday – or vice versa, and I am pretty strict about keeping my work hours to a standard working week.
  10. Consider writing a blog. As you can tell from some of my more moaning efforts, it’s cathartic! It also puts you at the heart of the great RA blogging community, allows you to find new friends who really understand and empathise with what you’re going through, and allows you to moan at the blog sometimes if you feel you’re overdoing complaining to your loved ones!

RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?

I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.

Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)

Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’

Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.

I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.

Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!

 

The 2nd Annual RA Blog Week is on its way

September 16, 2016 at 2:17 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
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Those of you who know me, either in person or through the blog (or in Carla’s case both), will know that the chance of me blogging once a day for a whole week is … erm, let’s be honest … pretty much nil, and I’m in total awe of those of you who manage to do it for a month, which I seem to remember included Wren and possibly Catepoo at some point also. However, the Second Annual RA Blog Week is coming up – 26th September to 2nd October, and I’m gonna try … I really am. It’s organised by Rick Phillips wtih input from Wren (who seems to be all over the RA blog sphere at the moment – go girl) and a bunch of others.

It has this handsome badge, which I will try to remember to put in my widgets on the blog when it’s blog week time (if I can remember how) …

oh dear, that’s two things to remember.

Fortunately if you sign up for RA Blog Week here then Rick will send you reminders – or at least I think so. Maybe you have to sign up somewhere else for reminders.

I’m allowed to be brainless at the moment if you don’t mind! I’ve had a heck of a couple of months at work and I’ve just ‘broken up’ for the holidays – at least a week’s holiday, which by the time this is published I will be on …or back from, depending on when I publish this. Consequently the brain is in free-fall at the moment.

There’s been a vote on what to blog on for each day, with a couple of wildcard topics thrown in if one really doesn’t suit you, and you can find out what each day’s blog will be about here. I love stuff like this because one of two things happens: 1) We all take the same topic and come up with completely different takes on it, and then say , ‘Wow, whoda thought it – so many ways to look at the same topic!’ or 2) We all say pretty much the same thing and then go, ‘Wow, whoda thought it? Everyone’s feeling the same as me, and I thought it was just me. I don’t feel so isolated anymore.’ Either way’s a winner – so now we just have to look forward to the 26th.

And Rick, keep sending those reminders please … you can tell from this post that my brain is suffering from Swiss cheese syndrome, so I need all the help I can get. Thanks!

 

 

 

 

 

 

 

 

 

Cloudy with a Chance of Pain – again

September 10, 2016 at 2:15 pm | Posted in arthrits, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Preliminary data can be a dangerous thing, but the gloriously named ‘Cloudy with a Chance of Pain’ study, which I blogged about here when I first signed up for it, has produced some very interesting preliminary results. They have participants across the country and indeed internationally, but for the initial results they were focusing on two big cities (Leeds and London) and one rather smaller one, Norwich, quite close to me. They looked at chronic pain in general (not just arthritis) and found a link between wet weather and an increase in pain – something many of us have been muttering about for years (indeed people have been muttering about it for centuries), but which has never been seriously studied before so far as I know.

The Cloudy study works by getting patients to fill in an app each day which measures wellness, pain levels, stiffness levels, time spent outside, fatigue, tiredness on waking, air pressure (based on your phone letting them know where you are so they can find out the pressure from that) and possibly some other things I forget.

I’ve had some frustrations with the study, most notably that they lost five weeks of my data, which I’m still fuming about, although they did send a nice apology, which stopped me ranting at them any more. (Yes, I had the odd rant or two … sorry guys!) As time has gone on though, the app has improved a lot. It now allows you to graph any two measurements from the list above against each other to see if there are any obvious correlations. It’s then also possible to go onto the website and look at massed data for all participants, which you can then attempt to analyse and send in your own suggestions as to what the heck’s going on. I’ve not tried that – I’ve been too busy making a living – but it does sound like fun.

Interestingly, and if you’re in the UK and reading the blog I’d be mighty surprised if you haven’t heard about this already as it’s made a huge splash (pun intended) in the media, their preliminary data does suggest a link between chronic pain and wet weather. You can read more about it here on the Cloudy blog. Now it is preliminary, but it certainly does look promising. Another six months to go until the end of the study, and then we’ll see what they find out.

So do my graphs correlate – pressure and pain? Erm … nope, not really. Funny thing is they were correlating beautifully right up until the point they lost my data (thanks guys) but after the five-week hiatus pressure and pain haven’t correlated especially well. I wonder if that’s because I’ve generally not had much pain for the last couple (until yesterday, which is partly what reminded me to write something in my blog!) I think maybe if I’m already suffering, then things get worse when it’s wet. If I’m going through an ‘under control’ period, then it doesn’t matter how wet it is, I’m fine. That’s just speculation though – I’ve not tracked it properly. Maybe in another six months I’ll have a better idea.

So keep it up, Cloudy team – you’re doing a great job … even if you (or rather umotif, whose app it is) did lose my data. (Me, hold a grudge … never …)

Ankles, Knees, Brain and Healthline

July 31, 2016 at 4:07 pm | Posted in arthrits, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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First of all thank you to Healthline for selecting my blog as one of the best arthritis blogs of 2016, and congrats to my online (and in Carla‘s case actually met in person) friends who also achieved one. Good to see so many old friends listed, as well as Carla, Wren,  Cathy, Andrew, Amanda, Kelly and ‘Warm Socks’ also feature, and there are other blogs on there that I’m not familiar with and should take the time to get to know!

Now on to the body parts! My last post, a couple of weeks ago, stated that my knee was messing around again. Well I suspect there’s a little bit more permanent damage done each time I have a flare, and that knee has a lot of flares, but now it’s not not bad at all. Most of the time I’m having no problem – so long as I don’t walk into the printer table and bruise  the precise spot that I flare in, as I did last week!

Then last weekend my ankle suddenly went ‘weird’. I can’t think of a better way to describe it. It hurt in the night and when i got up in the morning it was really painful. There was a big swelling but not really over the ankle, rather at the front of the leg above the foot, but absolutely no heat. I used my Physicool ice bandage anyway and that helped. It stayed painful and difficult to walk on for two or three days and then it was magically better. I really don’t know what that was about or if it was RA or not – I just hope it doesn’t come back.

As to the brain, such as it is, it has been subjected to a lot of migraines lately, and although I have tablets that, if I take them in time, get rid of the head pain, I’m still left feeling unwell. Work is insanely busy at the moment, which is contributing to stress which in turn is probably contributing to migraines – a bit of a vicious circle as if I have to take time off for migraines then work gets even more hectic!

However, yesterday, for the first time in a couple of weeks, I actually felt well, normal and full of energy – hence finally getting round to post! I’m not QUITE so full of energy today but not bad. I think getting outside in the sunshine made a big difference! We went for a nice long walk along the seafront at Cromer on Friday evening and then yesterday morning I did some gardening and washed my car with hubby (for which read watched and occasionally waved a shammy over the car while hubby did the hard work) – thank you dear!

I’m just hoping this energy boost will last me through the next hectic week – because next Saturday I’m going to need to work or I’ll never fit everything in!

Two steps forward, one step back…

July 12, 2016 at 2:28 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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Well, yes, the knee flare was completely over … for a few days. I was just getting back into the swing of things, gradually building back up the length of my lunchtime walks from a few hundred yards to half a mile, to three-quarters of a mile … thinking I’d soon be back to the mile-and half … and then I woke up in the middle of last Friday night thinking ‘Ouch!’ I’m telling myself it’s not really flaring this time … I haven’t decided yet whether I’m lying to myself.

I certainly don’t want another dose of prednisolone just yet… if they’d even give me one, which I doubt. Having said I never have side effects, Carla happened to mention that sleeplessness and irritability are major side effects of pred, and guess what… I had a really sleepless and irritable week while I was on it – I just failed to attribute it to the pred. Now it all makes sense. And OMG, the night sweats!! I had no idea that was a side effect and I get hot flushes anyway so I just thought, ‘Coo, bad hot flushes, much worse than usual!’ I was slightly worried that this was more than hot flushes as the ‘sweats’ part was a whole lot more dramatic …again, I hadn’t realised this is a common side effect of the pred.

Now I’m still ALL for the steroids – the side effects, now I realise  that’s what they were, were horrible, but the flare was much, much worse. The side effects I personally experienced were definitely the lesser of two evils and the pred let me carry on with my life and work, which I couldn’t have done without it. However, having said that, it does make the thought of another does quite unappealing if it can be avoided.

This time round the knee’s not hot, it’s not especially swollen and it’s not actually madly painful … it’s stiff but bendable, so really quite different to the definite flare I recently experienced.

Remember those knee-strengthening exercises I was doing, so that if I flared again I would have strength in the surrounding muscles and hopefully come out of it faster? No? Well you wouldn’t because I forgot to post about them. Unfortunately I have also forgotten to do them for the last few months, which is a pity really because I suspect that’s what the problem is now. As a horribly unfit person, having a bit over a week practically off my feet  means I do need to build up those muscles etc. again and I think the minor pain and stiffness I’m experiencing is probably all about that.

So, spend goodness knows how long fighting for a doc appointment, to be told, if I’m lucky, that they’ll refer me to physio, which will take six weeks minimum, by which time I hope I’ll have recovered anyway, or just carry on and hope? I’m going for the latter at the moment. Wish me luck!

Knee flare over!

July 6, 2016 at 8:56 pm | Posted in arthrits, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
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Hurrah – I finished my week’s worth of prednisolone last night and I’m glad to say the knee is better! Oh … and the helpline phoned me back … on Monday … so five days after I phoned them. Yeah, like I said, they really are NOT for emergencies! I didn’t actually get to speak to her as she phoned on the home number even though I’d requested they try me at work. ‘If you didn’t manage to speak to the doctor or need some advice, do call us back.’ I did see the doctor and didn’t need advice, so I haven’t called back.

I’m still getting a bit of pain in that knee on and off, but then I usually do; I’ve got full ‘bendability’ in it and most of the time it’s not hurting, so I’m quite content … although I do feel as though I’ve just run a marathon, having been cheering on Andy Murray as I watched him (on the telly) fighting his way to the semifinals at Wimbledon!

The frustrations of not having a relationship with your doctor

June 29, 2016 at 4:32 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 7 Comments
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Thanks to the state of the NHS today (which, if you read this blog often you will know I harp on about endlessly) it is simply not possible to have a relationship with your GP these days (unless you’re incredibly lucky or live on some tiny island that actually has its own GP or something!) My GP practice has around 10 GPs plus locums. It’s pot luck who you get to speak to when you call and they phone you back, and then if they decide you should be seen you won’t see the person you spoke to that morning.

It also seems that they don’t have much of a relationship with the hospital and seem to have some sort of mythic belief in the power of the rheumatology helpline, as I’ve also mentioned before.

The myth

The patient calls the GP because they have an RA flare. This is a shocking waste of the GP’s time because these lucky, .lucky patients have an RA helpline that they can call and that will solve all their problems. They can speak to a lovely nurse* straight away and the nurse will wave her magic wand, waggle her magic pixie ears and solve the patient’s problem.

* Actually that’s the only true bit – the one we have at the moment IS a lovely nurse!

The facts

The lovely nurse, or even a secretary or receptionist, never EVER answers the helpline. It is an answerphone. That’s the way it’s set up. It’s not an answerphone on odd occasions when they’re exceptionally busy, it’s ALWAYS an answerphone. The message on the helpline says something like: ‘If you’re calling about a non-RA related problem, please call your GP. If you’re calling to change an appointment, please call reception. If you’re calling about an urgent need, please call your GP. If you’re calling to buy fish, please contact your fish monger. If you’re calling to moan about Brexit, please contact your MP. If you’re calling because you’re a moron, voted ‘Leave’ and can’t work out what a helpline is for, please call someone else and bother them. Now, if you really, really want to leave a message, we suppose you can. Give us your hospital number and name and telephone number and we’ll try to call you back in 24 hours – but no promises mind.’

I don’t know about you (actually I probably do, if you have RA) but I consider a flare pretty urgent.

While in an ideal world I would sit back on a couch, watch the telly and let my servants feed me grapes while I rested my knee and waited to see if it would clear up on its own, I do actually have a life (and no servants, and hubby is great but also has a life, and the cat just ain’t interested in helping), so I can’t just sit about and rest it. On that basis I can’t wait potentially 48 hours or more for the helpline to phone, and the nurse say, ‘Call your GP and get some prednisolone’ because then I can’t call the GP until Monday  as 48 hours is Friday morning and by the time I’ve heard back from the helpline the GP has run out of appointments. By that time I will have been flaring for over a week!

What Polly did Next

So … I went to the appointment grudgingly granted me by the grumpy GP. (Ooh, nice alteration that penguin!) Fortunately it’s with a much more pleasant locum GP than the one I spoke to on the phone. Unfortunately of course she doesn’t know me from Adam (or strictly speaking, as a doctor, she can probably spot I’m not Adam from the wobbly bits, so I should say she doesn’t know me from Eve). This means that she doesn’t know if I’m a moron or not, and therefore has to assume I am, as we always have to cater for the lowest common denominator.

‘How can I help you?’

‘I’m having an RA flare in my knees, as usually particularly in my left knee. It’s stiff, not very flexible and painful at times.’

‘Have you called the helpline, because really -‘

‘Yes.’

‘Oh, and what did they say?’

‘I said I’d called them, not that I’d spoken to them!’ I then explained, gently, ’cause she was a locum and therefore wouldn’t necessarily know any better, the realities of the helpline. (I didn’t mention Brexit or fish mongers.)

‘Hmm, you had a blood test only yesterday and your bloods were hardly elevated at all.’

‘They never are.’ The mere fact that my bloods are even a smidge elevated is a pretty strong indication of a flare with me. Sometimes I flare and there’es no indication whatsoever in the bloods. Now this is where a doctor relationship would come in handy. If she’d actually known me, known that I’ve had RA for nearly ten years, known that I’ve had umpteen flares in my left knee, known that blood tests are not a helpful indicator with me, known that I have a brain, we could have skipped the pointless bits, more of which are coming up.

‘Ah, well let’s have a look.’ Prod, poke.

‘Aaaaaaaaaaaaaaaaaaaaaaaaargh!’

‘Did that hurt when I pressed there?’

‘No, I just thought I’d make screamy gurgling noises for fun.’ (Nope, I didn’t really say that either, I just said yes.)

‘Can you bend it?’

‘This much.’ Demonstrated a very slight bend.

‘Ah. Have you tried pain killers… like paracetamol?’

I’m afraid I just looked at her and laughed, finally managing to choke out a ‘yes’, followed by ‘interspersed with ibuprofen.’ She looked amazed that I’d been able to think of painkillers all by myself.

‘Well I’ll prescribe a course of steroids. Now if they don’t work, we’ll have to consider other possibilities like osteoarthritis, as they should work for RA.’

‘Well, they’ve worked every other time I’ve had them, so touch wood that they will this time too.’

‘Oh … right.’ Look of mild astonishment, either that I’d had them before (it’s in the notes dear) or that I actually knew that I’d had them before, who knows.

So I thanked her very nicely, ’cause I’m a well brung-up penguin … and I might run into her again, and off I went to the chemist to get my steroids.

Again, after nearly ten years of RA, I think I recognise an RA flare when I see one … I really hope I’m not proved wrong and that the steroids do work again this time and it doesn’t turn out to be OA. That would be sooooo embarrassing after this post!

Wow – where did that come from?

June 27, 2016 at 1:38 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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I haven’t posted for a while because I haven’t really had much to post about – health-wise I’ve been good. I’ve been a bit stiff in the mornings for the last few days, but nothing to write home (or indeed blog) about. Then today I woke up stiff and tired, having had a migraine try to start in the night (successfully stopped with drugs!) I really couldn’t wake up for an hour or so this morning – not literally, I got up, had breakfast, went to work, but felt really brain fuggy. (Can’t blame the methotrexate as I take it Monday evenings and it’s Monday morning!)

Then when I got up to go to lunch, or rather tried to, I started to stand up and ended up collapsed back in my chair. No dramatic pain or anything – I was just so all-over stiff that joints weren’t doing what they were supposed to do! So after sitting a minute or two and flexing various bits (luckily on my own in the office so no one to see how weird I looked) I managed to get up and go for a short walk. I’ve been trying to walk about 1.5 miles at lunchtime but today I didn’t make 0.5 miles! The stiffness did mostly ware off but I was left with significant pain in the good ol’ left knee, where I usually get a flare if I’m going to have one. I’m really hoping I’m not!

Perhaps it’s the stress of ‘Brexit’ – the ‘Wow – where did that come from?’ title could also apply to that and it seems that partially to blame (apart from racists, stupid people and perhaps a handful of people with genuine concerns) may be the polls (as opposed to the Poles, which a lot of East Anglia would like to blame, I’m sad to say). The polls kept saying we’d vote to stay, so people decided that it wouldn’t matter if they had a ‘protest vote’. ‘Let’s vote leave, just so the government can see we’re annoyed with them – we’ll end up staying anyway.’ I’ve actually heard people say it, and then there’s this http://article in the Independent. No doubt people like this thought they were being terribly clever and original, but you get enough people doing the same thing (not that original after all guys) and guess what, we end up voting Leave.

Never mind the embarrassment of waggling stiff limbs about randomly in front of people, I feel embarrassed to be English at the moment! (I would say British but the Scots voted to stay!)

Hopefully the stiffness and knee pain will be a short-term issue. Alas, the same cannot be said for the state of Britain!

Baby Doc Shock!

May 18, 2016 at 10:04 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 4 Comments
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I hope those of you in the UK appreciate the Sun style headline! All will become clear shortly, but let’s start with a once upon a time, like all good stories. Once upon a time, two weeks ago in fact, I had ear ache pretty badly … I called the doc, saw the nurse practitioner, got antibiotics for an ear infection, was told not take my methotrexate that week so it didn’t fight the antibiotics (so to speak),  took the antibiotics, got better (but not 100%) and that should have been the end of that … only it wasn’t.

Guess who forgot NOT to take the methotrexate? Bad Polly Penguin!

So anyway, Monday night the ear was niggling quite badly again (and I’d been off the antibiotics for a few days) so I thought, right, I’d better call the doc tomorrow and not take the MTX. Of course yesterday morning the ear felt fine. ‘Still call the doc,’ said wise hubby … and I really, really meant to, but we were very busy at work and I completely forgot. The ear was fine all day. So I thought right, better not delay the methotrexate any longer and I took it last night (and had a most appalling stomach upset, incidentally!)

‘Still call the doc about the ear,’ said wise hubby again, ‘you don’t want it flaring over the weekend when you can’t get a doc,’ so I thought I would … and in fact the ear was niggly again last night and this morning, so at least that reminded me.

Got through to the surgery very quickly. The system is normally you speak to the receptionist, they get a doctor to call you back and then, if the doctor feels the need, you go in and see them. In this instance, to my amazement, as soon as I said what the problem was the receptionist said, ‘Can you come in now?’ So I did. Fantastic, I thought – red flagged because of my immunosuppression – I didn’t think they did that.

And now, finally … for anyone patient enough to have read this far, we get to the baby doc shock! I went in and saw the doctor, who I think is a locum (they mostly are as we have terrible recruitment problems – heaven knows why, it’s a lovely part of the world). She must have been just out of training. She was really lovely, hadn’t had the softness knocked out of her yet, excellent bedside manner, sweet as pie (much sweeter than the original ‘Baby Doc’) and very helpful. She checked both ears, checked my temperature, asked about the history of the last couple of weeks … confirmed I actually had some infection in both ears (which was a surprise) and asked me to come back in a week or so just to make sure everything was OK after I’d finished the antibiotics. All well so far.

‘Shall I take my methotrexate next week, while I’m taking the antibiotics?’ I asked. Baby doc looked thunderstruck. Heck! So much for the red flag for immunosuppression – she didn’t even know I was on methotrexate. ‘I’m on methotrexate for RA,’ I elaborated. ‘The nurse practitioner said not to take it last week because of the antibiotics, so should I take it this time or not?’ (I admit I failed to fess up to having taken the MTX last week!)

‘You’ve got RA? How long have you been on the methotrexate?’ she asked.

‘Oh ages,’ I said cheerfully.

‘But you’re so young for RA!’

My turn to be thunderstruck. Yes, I KNOW GPs have to know a smidgen of everything and there’s a heck of a lot of everything out there, so they can’t be expected to be experts on anything; yes, I know that she’s only just out of nappies … sorry, school … sorry, college;  yes, I know it’s a commonly held misconception … but … well, can I just say aaaaaaaaaaargh.

I didn’t say aaaaaargh to her. After all, she’d been very nice and helpful and I didn’t want to antagonize her … but I did point out that RA can hit at any age, and that mine had started nine years ago when I was 39. Unfortunately, perhaps, I didn’t really push the point … maybe I should have done. She’s probably still a ‘GP trainee’ and might have found the information valuable. Thing is, I was kind of in shock that she’d made that comment and I just didn’t react fast enough.

My apologies for the whole ‘RA’ and arthritis ‘community’ – I feel that I’ve let us down!

 

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