Hobbies

September 28, 2017 at 6:03 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, crafting, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , , , ,

Heavens to Murgatroyd, the woman with more hobbies than days of the year nearly forgot to write a third annual blog week post with the prompt hobbies!

Well, where do I start? I’ve done ‘crafty stuff’ since I was a tot, especially needlework. I can remember learning to sew a simple picture in pale green cotton on a slightly darker green background (fabric that I think was part of the ‘Daisy suit’ I had when I was four … and I can’t have been much more than four when I was sewing that picture). I haven’t stopped since really. On top of that I love to crochet, I do botanical painting/drawing, I’ve recently started making felt (and even taught a class on it recently … don’t ask, just don’t ask … I think I have to do that about once every ten years to remind myself that it is NOT my vocation!), I read a lot and I’m learning Spanish. I love to go for walks in the country, I’m very interested in entomology and especially plant galls, but natural history in general and … I write a blog … about once a year for Annual RA Blog Week!!

I’d say all my hints and tips from hints and tips day earlier in the week also apply to ‘managing’ ones hobbies, and I have to say when it comes to pacing yourself I kinda fail … well, with this many hobbies how the heck am I supposed to pace myself? I mean really … BUT I do try (with some gentle nagging from hubby) to stop doing whatever crafty thing (or painting thing or Spanish thing or natural history thing) is occupying my brain by about 9 pm each evening so that I have an hour to wind down before I go to sleep; and I do try really hard to pace myself at least by saying if I’m, for instance, going on a felting workshop one weekend, I won’t do a painting workshop the weekend before or after. (Epic fail on that this last month, but never mind – I had a ball on both weekend workshops!)

RA has slowed down or almost stopped some of my hobbies – crochet is the biggest problem. Just last year I worked on, and completed, a big project crocheting a waistcoat (vest to those across the pond) which went brilliantly, but this year I’m finding my hands just won’t put up with hours at a time of crochet, so I’ve been concentrating more on other things – hey, no shortage of those … especially as I also work full time! The other one is going for walks – I still do, and I still love it, but walks have to be either carefully planned (so that I know I can stop and sit) or just short! On the whole they’re short! Luckily we have three beautiful nature reserves close to where we live so we have a good choice of walks – even though one of the reserves is the size of a postage stamp. Some of the hand sewing I really enjoy has slowed a bit too – I certainly do less of everything than I used to … maybe fatigue … maybe just age!

I love all of my hobbies and I’m very grateful that I haven’t had to give any of them up altogether. Having hobbies keeps me (relatively) sane and takes my mind off both work and health problems. In fact painting (when it’s going well) is like a good meditation – I just forget about the world and focus on the painting and can get lost in it for an hour or two and wonder where the time has gone. I find all my hobbies relaxing (unless I’m trying to teach them) and fun, and I think having fun and relaxation in life is vital to keeping things balanced and happy. I’ll never be a master of anything because I’m too busy having fun being a Jack of all trades, but that’s just fine by me.

 

Advertisements

Mental stability and RA

September 25, 2017 at 8:19 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 5 Comments
Tags: , , , , , , ,

Good heavens – it’s RA Blog week again!

It seems like only yesterday that Rick at RA Diabetes Blog was organising the last RA blog week … I’m not sure where this last year’s gone!

Today’s prompt for RA Blog Week is mental health – well, the reason I started this blog in the first place was partly to keep me sane … but then again, the reason I’ve hardly posted the last few years is the fact I haven’t had major RA problems and I therefore haven’t had the commensurate mental health issues. However, I do believe they are, for me, commensurate and correlated.

I have mentioned before that if the RA is bad then I can’t sleep, and how important sleep is for me. I think this short post about dreaming and sleeping sums up just how important sleep is for my mental health – and if the RA is bad, then the pain keeps me awake and a downward spiral ensues. I remember once when I had a very bad flare, even though I’d experienced equally bad flares before and come through them, I got very, very down with this one and convinced that I was never going to walk normally again, if at all. WRONG, thankfully – unless I’m in a flare I walk without aids all the time – I’m very lucky that my RA is mild and well-controlled. However, with that flare I was getting hardly any sleep, and when I did sleep I was probably dreaming (knowing me) about life in a wheelchair … although at least in my wheelchair dreams my wheelchair is often a flying one so not so bad … but I digress; the point is that’s an example of how the RA, lack of sleep, feeling low cycle can just spiral down and down.

So … how do I stop that happening? Well, there are two main areas to deal with and these are dealing with the RA flare itself and sleeping better. Since there is a Tips and Tricks post coming up later in RA blog week, in which I plan to talk about pain management, I’ll talk a bit about sleeping better here.

I’ve never ever been a good sleeper. As a young teenager I used to love listening to the radio between midnight and 2 am … because even though I was supposed to be asleep I was mostly awake anyway, so why not? I’ve always been one for very vivid and usually completely bonkers dreams, which quite often are not pleasant. I also move around a lot in my sleep, talk a lot, shout quite a bit and am generally not a pleasant person to be with … or to be! But just recently, helped by watching some lectures on sleep physiology and also on chronic pain (even though I don’t have chronic pain, thank goodness) and mostly helped by Hubby deciding he was going to buy some fancy Bluetooth lighting, I’ve found two strategies that really help me sleep.

The first is very simple – blackout curtains! My, what a difference. I was always waking up at 4am or thereabouts in the summer and the light would be streaming in through the not-so-thick curtains and I’d think ‘Gosh, I’m wide awake’ and then I’d be lying there trying to get back to sleep and not managing very well for often an hour or two. Now, having gone through the painful process of making myself some blackout curtains (I HATE MAKING CURTAINS), I no longer have this problem.

The second is the Bluetooth lighting system that hubby got, which at first I thought was sheer indulgence – you can control the lights from your i-Pad? Big, fat, hairy deal (although I did have to admit it was rather fun) – you can also get up and flick a switch, and that’s slightly less lazy… ! But I was wrong, and here’s why.

  1. You can control the ‘colour temperature’ of the lighting, and one of the sleep lectures mentioned that warmer, more orange lighting was more conducive to getting to sleep while cooler, more blue lighting was energizing and waking.
  2. I can now set the light in my bedroom to gradually dim from normal brightness to ‘nightlight’ over about half an hour.

So half an hour before I think I should be trying to sleep, I turn my warm light onto the gradual dimming program and by ‘lights-out time’ the light is very nearly out ,and so am I. Honestly, I feel soooo sleepy at that point most nights and I’m … well, out like a light. This really was never the case before – normal for me would be falling asleep half an hour to an hour after the lights went out.

As I said before, good sleep and mental health are inextricably linked for me, so this is a massive help. I am also finding that with better sleep (and other things like Pilates, and consciousness about the position/posture I’m in etc.) I’m physically healthier too, so it’s a win-win … kind of an upward spiral I hope, rather than the downward one I mentioned earlier.

Blinking knee again!

July 26, 2017 at 9:01 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
Tags: , , , , , , , , , , , , , , , ,

Sorry – not my most inspirational blog post title, but I’m not feeling very inspired!

My knee has been playing up for a couple of weeks now – mostly the left one, as usual, with the occasional twinge in the right. At first I thought it had nothing to do with RA because the pain was in a different place – behind the knee, not to the front-right as ‘normal’, and there wasn’t much swelling … but over a couple of weeks the swelling has increased a lot (in its usual place) although the pain remained mostly behind the knee. My Pilates teacher (still loving the Pilates by the way) suggested it might be a pain caused by hyper-extending the knee, which I am prone to do, so  I spent a week very consciously NOT hyper-extending the knee and then realised that, given it was always significantly worse in the morning, and that it now involved significant swelling and  greatly reduced mobility, it was probably just good old RA again. So, today I plucked up the courage to phone the doctor. (It takes courage these days, believe me!)

It seems that the receptionists have now become triage nurses! I was not impressed. We used to get ‘Can you give me some indication of the problem if it’s not personal, so I can let the doctor know’ which was a reasonable request in my view. Today I got, ‘Can you give me a brief account of the problem please.’ Well it wasn’t personal so I said, ‘Yes, rheumatoid arthritis.’

‘Oh, you want pain relief then?’

‘No, it’s a bit more than that, I’m having an RA flare.’

‘Have you seen a physio? Do you think that might help?’

‘No, I don’t think so. I’m having a rheumatoid arthritis flare and I need to speak to a doctor.’

‘Oh … OK then …’

I actually wrote to the surgery via their contact form and told them what had happened and asked what training the receptionists, being non-medical staff, had if they were now supposed to be triaging to this extent. I said that I felt it was inappropriate and that the comments suggested a lack of understanding of the difference between RA and OA. I haven’t had a reply and I don’t expect one.

The doctor eventually phoned back at 11:30, meaning it was too late to go for the blood test that I should have gone for today, because you have to be there before 11! I explained the problem with my knee and he asked how long this flare had lasted. I explained that it’d been a while because I hadn’t twigged it was RA at first due to the pain being in a different place.

Now … this my American friends may find hard to swallow, but here goes … he asked about pain relief and I told him I was alternating paracetamol (Tylenol) and ibuprofen and it wasn’t cutting the mustard. He wondered about codeine and I said no (for stomach reasons). I asked about steroids and he said no, not yet, because ‘they can be problematic’ and then prescribed me a great big box of opioid pain relief tablets (meptazinol), 60 of the things! He said to try them out because if they helped it would be useful to know there was something else in my arsenal, which is true … and if they didn’t work, to come back next week and they would have me in for an examination and consider steroids … because all this was done over the phone.

So while you guys in the US can’t get an opioid for love or money now, or not without jumping through a million hoops, I just get handed 60 over the phone with a comment on the lines of ‘Don’t use them all at once. They’re only short term.’

He told me that the prescription would be with the pharmacy ‘in five minutes’. Luckily I took this with the pinch of salt it deserved because when I went to the pharmacy 1.5 hours later it had only just arrived!

Now he was probably, very sensibly, thinking ‘She’s had this two weeks, her flares rarely last even this long, it’ll probably be over in a few days and the pain relief will provide just that, relief, while it’s on its way out.’ And if he was thinking that, full marks to him because he’s probably right.

However, there’s a nasty, suspicious part of me that thinks even though the surgery says any comments and complaints won’t prejudice your treatment, he’s seen the comment I sent in and is thinking, ‘If I give her pain relief first, it makes what the receptionist originally said right …’ That’s probably nonsense – I’m prepared to admit to a tendency to be paranoid… but with the world going to pot in the way it seems to be at the moment, who knows!

I do have some comfort in the fact he’s a doctor I’ve seen before (actually face to face seen, a miracle these days) and do actually have some respect for, partly because I felt that he treated me as an intelligent person … so it’s far more likely he’s just easing me out of a flare with much reduced pain – and it IS much reduced. Of course it’s done nothing at all for the swelling or the lack of mobility in the joint, but it’s great to be relatively pain free and we’ll see how things go in the next few days.

Woohoo for Pilates… and other news!

April 22, 2017 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , , ,

I have just realised I haven’t posted on this blog THIS YEAR! Shocking neglect! Part of the reason is that I haven’t been having much in the way of RA problems – things haven’t been perfect but I’ve felt generally much better since Christmas than I have for quite a while … until a couple of weeks ago, when I started to get morning stiffness (I’ve had NONE most of the year) and some pain.

Now various things could have been the (or part of the) root cause of this. We were on holiday three weeks ago (lovely time!) and that meant I had much more caffeine and much more gluten than I normally would – but I’ve been relatively good since I got back and it was only a week away. Then holiday also upset the routine and therefore the sleep, and sleeping badly always adds to the aches and pains.

However, one big thing is that I have been having weekly Pilates sessions since November (I think, maybe October, maybe early December!) and felt a lot better after the first few of those … and due to my holiday and then Easter I’ve had three weeks without a Pilates session. I suspect this has FAR more to do with the increase in pain than anything else, although of course I can’t prove it.

Anyway, I had my first session for three weeks yesterday and felt MUCH better after it … although I still had a lot of morning stiffness and pain today. Hopefully after another session or two I’ll be back on track.

In the meantime, a really excellent new NRAS magazine arrived last week – one of the many interesting articles hinted at a link between fibromyalgia and sleep (although that wasn’t what the article was actually about), and that is something I’ve been thinking for quite a while so it’s interesting to see the medics sniffing round the same idea.

Another interesting article discusses (briefly) a study carried out in San Francisco on why some people don’t respond well to anti-TNFs. Patients who have a higher proportion of an inflammatory protein called type 1 interferon beta, compared to type one interferon alpha, respond less well. Also monocytes (a type of white blood cell) behaved differently in different people. This could lead further down the interesting path of being able to personalise treatment more by understanding a patient’s personal biology, but also perhaps (my suggestion not the article’s) indicates another thing that’s been being suggested for a long time by a lot of people … that RA is not just one disease but many lumped together under the same label.

There are also various grim reminders that being overweight can cause further problems for people with RA so I need to get back on track with the diet, which has gone to pot a bit since the holiday! I did manage to mostly avoid chocolate at Easter … but then went and entered a raffle on Easter Monday with a table full of all sorts of prizes and got a call the other day to say I’d won … a chocolate bunny! Oops. Oh well, I thought, perhaps it’ll just be a little one. I picked it up today. It is labelled ‘Giant Chocolate Bunny’.  Perhaps I’ll do the sensible thing and give it away …  🙂

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
Tags: , , , , , , , , , , , , , , , , , ,

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!

 

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
Tags: , , , , , , , , , , , , , , , , , , , , ,

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!

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
Tags: , , , , , , , , , , , , , , , , , , , , , , , ,

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!

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
Tags: , , , , , ,

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!

 

Cloudy with a Chance of Pain

May 2, 2016 at 1:55 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , ,

Isn’t that a fantastic title for a study of chronic pain to see if it is/might be related to the weather? Well, if you’re in the UK and have arthritis or chronic pain and  smart phone you can do more than just enjoy the great name – you can be part of the study!

All you have to do is agree to participate and download the Umotif app with the code word ‘cloudy’ – allow it to know your location and fill in the details (which really won’t take more than five minutes and probably less) each evening. I think you’re supposed to be able to set a reminder in the app, so that your phone will ping and remind you to complete the survey … as yet I haven’t worked out how tough!

To find out more about the project, funded by Arthritis Research UK, you can go to their website.

This sort of study needs lots and lots of people to really make it work, so if you’re eligible please do join in – it would be fascinating to see if any link to the weather is established. And as the article about this in Arthritis Care’s Inspire magazine points out, if nothing else the study might get a few headlines about arthritis, which ain’t that easy to do!

Even better, this really is ‘Citizen Science’ – anyone who wants to can explore the data, look for patterns and, if they find any, submit their ideas and hypotheses! Cool!

Unexpected Hospital Invoice

February 5, 2016 at 11:44 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
Tags: , , , , , , , ,

I got an invoice in the post yesterday from the hospital, ‘Charge for prescription fee’. I haven’t had a prescription fro the hospital – what the heck are they on about? Then I thought, ‘Aha – it’s probably for my appointment on 8th Feb – the injection’ so I phoned finance and pointed out that I had a pre-payment certificate, expecting a whole load of argument about, ‘Oh, we don’t deal with those’, but no – it went very smoothly and she processed it through with the pre-payment certificate- all fine.

Then I took another look at the invoice for some reason – not sure why – and read it properly. ‘Charge for prescription fee 17.01.16 – as no credit terms are offered, please remit by return. If no payment is received within 30 days the invoice will be passed to our debt collection agency.’

Now I was pretty riled and slightly confused – but imagine how some poor little old lady would feel receiving that – OK, it’s not a large amount of money but the aggressive tone is enough to give you palpitations if you’re that way inclined. (I’m not, luckily – it just made me cross!) So I phoned the finance department back and said, ‘Oy, what’s this about 19th of January. I wasn’t there on the 19th of January.’ only (slightly) more politely. ‘Just a moment, I’ll check …’ <Hold music> ‘Yes, that’s right, it was processed on the 19th of January.’ Deep breath … ‘Yes, I know that … but I wasn’t there on the 19th of January so what is this for?’ ‘Oh … er…. we’ve only got the same info that you have – we’re just asked to process the invoice. So you didn’t have an outpatient visit?’ ‘No.’ ‘And you didn’t visit A&E?’ ‘No …’ Did I not just say I wasn’t there? Was that not clear enough? Obviously not. ‘Oh … well, would you like to check with pharmacy?’ So she gave me the pharmacy number and said, ‘But don’t worry, it’s processed on your per-payment certificate anyway.’ And I’m afraid that riled me even more – typical number-cruncher attitude – it doesn’t really matter what it’s for as long as the numbers balance. But I didn’t say anything except a polite thank you for the pharmacy number.

So I phoned the pharmacy – ‘Oh yes, it’s for an injection – it was sent to your GP on the 19th of January.’ ‘

‘It better not have been – because they can supply their own quite handily I believe – they don’t need them sent from the hospital. Are you telling me I’m being charged for something I’m not going to get because my next appointment is with the hospital, not the GP? Or is it perhaps a dose that’s been sent to the hospital rheumatology department, because I do have an appointment with them on 8th February.’ And of course that’s what it was. Hurrah.

Is it really that hard to put on the invoice ‘For hospital methotrexate injection on 8th February’ and take out the whole ‘You are an evil person who hasn’t paid instantly for something you didn’t even know about’ bit? Apparently so. Grrr …

And that only took 20 minutes to sort out and was a one-off. A very intersting post from Carla over at Carla’s Corner, on the time needed to cope with a chronic illness. I have a tiny weeny fraction of what she has to cope with and it still gets me grumpy and slightly stressed.

Next Page »

Blog at WordPress.com.
Entries and comments feeds.