Tags: arthritis, consultant, diagnosis, doctor, GP, hospital, joint pain, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatology, stress, weather, work
I really hate the winter half of my six-monthly hospital appointments. I suppose it could be worse. I have the nurse practitioner visit (usually bad) in summer (not so bad), and the consultant or registrar visit (usually OK) in winter (not so good), so you could say it balances out. I have just had my visit to the register – a very nice young lady who, while obviously struggling with the basics of the English language, still clearly had an excellent grasp of autoimmune diseases! It took rather a long time to find any of that out though.
At the risk of sounding like one of those very bad school essays (‘What I did on my holidays: I got up at 4am. Mummy was cross and said go back to bed. I got up again at 6am. We left the house at 7am. We arrived in Wales at 11:30 am’ etc.) here’s why I hate the winter appointment. I left work at 10:15 for what should have been an approximately half-hour drive to the hospital for an appointment a bit after 11. Why leave such a long time? Because it’s December. The weather was a bit rubbish and if you have an appointment you can guarantee to get stuck behind something slow. I did. Then there’s the car parking – always fun. I struck gold in the third car-park I tried. As you can imagine, after driving round three car parks, all for several minutes, I was starting to cut it fine, but as soon as I reached the Rheumatology Department I realised I need not have worried. The waiting room was heaving! I handed in my appointment letter, took my seat and waited … and waited … and waited. The usual charmless nurselet called me in, did the ‘weigh and wee’ and then I got sent to the equally busy inner weighting room … where I waited … and waited … and waited.
After about an hour a nurse came out and wrote next to my consultant’s name on the notice board ‘running one hour late’. Twenty-five minutes or so after that, I finally got seen. Fortunately I’d taken in a good book. Unfortunately, as it wasn’t so cold as last year, and they were probably even more short-staffed, no one offered us a drink. I hadn’t had time for a drink on arrival because it was time to check in, so I was a bit parched.
Useful appointment with nice registrar followed, which culminated in a further referral (who knows where, who knows when … but no hurry, nothing urgent!) and a blood test. ‘Will you give me a form so that I can get the test at my GP?’ I asked. ‘No, no,’ she said, no doubt intending to be most helpful, ‘you have it here. Just go to the blood test department …’
So, by now thirsty and pretty peckish too, but thinking I’d better get this done before heading for a café, I went and found the blood test department. Guess what? The waiting room was heaving AGAIN. That’s another reason for hating the December appointment. People get ill in the winter!
I went up to reception and got a ticket – 73. The number just called was 63. Only ten, I thought. Surely it won’t be that long. ‘What’s the waiting time likely to be, just roughly?’ I asked the receptionist. ‘Hmm,’ she said. ‘Could be up to 45 minutes … but it might be much quicker.’ Aaaaaaaaaaaargh. 45 minutes? Aaaaaaaaaaargh! And we were so busy at work too. So I phoned the duty junior penguin at work and went ‘Aaaaaaaaaaaaaaaargh’ down the phone at her. (It’s in the job description – ‘be prepared to listen to senior penguin going aaaaaaaaaaaaaaaaargh periodically’.)
As it turned out though, the queue did go down quickly. All of a sudden they were charging through people and I was the only one left, and then my number came up, and in I went to be processed. (It did feel a bit like that this time, but given the numbers they were having to get through, I can’t really blame them!)
And so back home, stuck behind another slow lorry most of the way and then, somewhat peculiarly, a slow ambulance! I eventually got back into work at around 2.15.
Four hours out of work: total time with medical staff, approximately 15 minutes. Frustration factor: high.
Merry Christmas, Felis Navidad, Feliz Natal and Happy Chanukah to all.
Tags: aches, arthritis, cold, flare, flare-up, joint pain, knee, knee cosy, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, stress, warm, weather
Oh crumbs – it’s snowing! You may remember that in my previous post I was winging about the cold the other day; well, it’s colder.
Yesterday the journey home was worse than I ever. I had a hectic day at work but I felt fine (if a little stressed) … and then I left the office to go home.
The moment my left knee found itself outside it started to complain, and the complaints got louder as I drove, to the point where I knew I wasn’t able to concentrate a hundred percent on my driving. Not good!
Although I get the ‘traditional’ sore and achy hands and feet of RA, the worst affected thing has always been my left knee, and if I have a flare that’s usually where it starts. This is the first year I’ve really noticed the cold affecting it though.
I’ve been trying to think of a way to keep that knee warm, specifically while driving. A lap blanket (Afghan in the US I believe) wouldn’t be safe, as it might slip into the foot-well and get tangled with my driving foot. (Fortunately, considering the sate of the left knee, I drive an automatic!)
I’ve decided the solution might be a ‘knee cosy’! I’m not quite sure yet how it would work. Perhaps a combination of a sports-style knee protector and a pouch that could incorporate one of those gel reusable hand-warmer type things?
I’m disappointed, but not surprised, to discover I’m not the first person (by a long, long way) to think up the neat ‘knee cosy’ moniker, but people are using it as a name for lap blankets, not for my cunning plan. I may have to make this my Christmas craft project!
Tags: aches, arthritis, R.A., recipe, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, weather, work
No, unfortunately I have not just come back from a spa break or something. The warm, spicy sauna was my kitchen a few hours ago, and very nice it was too, having come in from work absolutely freezing.
The trouble is, if you can call it a trouble, that I only live a couple of miles from work, so I get into my freezing car at the end of the day and arrive home frozen to the core ten minutes or so later, as the car hasn’t had time to warm up. No good for me or the car really! I definitely find joints stiffen more when they’re really cold, and I generally arrive home pretty achy at this time of year. Hubby, being the good sort he is, is usually there to provide warming hugs and coffee (unless he’s working late), but today I decided I needed something really warming for supper too.
So I made Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous, which always goes down well. Since this involves much froiling (a combination of boiling, broiling and frying, except that really it isn’t frying as I don’t use any extra fat) and lots of lovely warm-smelling spices, by the time I’d finished the kitchen was steamy and smelling like a spice market, and I was WARM! Even warmer when I’d eaten it.
If anyone else fancies turning their kitchen into a spicy sauna, here’s how, but I warn you it’s a bit vague as recipes go because I don’t tend to measure anything, including time!
Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous
Serves one penguin and one hubby
1 large onion
1 chicken breast (I’m sure Quorn would work equally well)
Half a can of tinned plum tomatoes
A couple of squirts of tomato purée
6-8 green cardamom pods
1/2 teaspoon of ginger
1/4 teaspoon of cinnamon
A generous grating of fresh nutmeg
Couscous – I like to cheat with a packet that’s got bits and bobs mixed into it
Dry stir fry the chicken over a fairly high heat, adding a little boiling water as necessary to stop it sticking to the pan. Add the onion and a bit more water and turn the heat down. Lightly crush the cardamom pods, and chuck these in along with the rest of the spices. Allow the onion to soften for five mins or so adding boiling water as necessary. Then chuck in half a can of tomatoes and allow to simmer on a medium to high heat until it’s reduced (i.e. a lot of the water from the tomatoes has boiled off) . Then turn down to a low heat and prepare the couscous as per instructions on pack. This generally involves waiting five minutes. Once the couscous is prepared and you’re waiting for it to be ready, add the tomato purée to the pan and stir in, which will thicken everything up beautifully.
Serve up and enjoy – and feel lovely and warm and, if like me you hardly ever cook properly, virtuous!
The whole thing only takes about half an hour from getting the onion out of the cupboard to serving up, so you don’t have to be on your feet for ages either … and there’s plenty of time in between for a quick sit down!
(I kinda spoilt the warming effect by following this up with a toffee ice cream … oops!)
Tags: arthritis, doctor, osteoporitic fractures, osteoporosis, R.A., RA, research, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
According to a study from the Mayo Clinic, women younger than 50 with rheumatoid arthritis are very significantly more at risk of sustaining osteoporotic fractures (for which you presumably have to have osteoporosis first) than women of a similar age who don’t have RA.
The article is somewhat confusing, as it also states ‘Young men with rheumatoid arthritis (RA) are also at an increased risk, but not until they are over age 50 years.’ Um … is it me? You can find the article here and make up your own minds.
I think what the researchers are saying, and what the article is trying to say but not very clearly, is that anyone with RA is more likely to have osteoporosis than those without this dratted disease, which is common knowledge amongst most rheumatoid arthritis patients, I suspect, but if you’re under 50 you’re much more likely to get it than those who don’t have RA. Cheerful thought for the day!
Oh well, forewarned is forearmed; don’t let your calcium levels go down! (Not actually sure what you do to stop ‘em, except drink milk, and of course most doctors won’t be testing for it unless you’re over 50 … or 60 …) Perhaps that’s why more ‘young’ women actually sustain osteoporotic fractures – because it’s not until they have a fracture and wonder why that anyone realises they have osteoporosis? Cheerful thought number two!!
Off for a pint … of milk!
Tags: aches, arthritis, exercise, fatigue, fibromyalgia, joint pain, knee, neck pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, stress, tiredness, weather, work
Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!
I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.
Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!
*This is the expurgated version
Tags: aches, arthritis, diagnosis, doctor, GP, joint pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, work
I met up with a friend yesterday who I haven’t seen for ages, in spite of the fact that we work in the same tiny town. It was great to see her but I was somewhat dismayed when she asked me about my arthritis and then told me that her husband seemed to be suffering from what appear to be RA symptoms too.
‘One of his fingers is permanently hooked now,’ she said, ‘and sometimes when he goes to open a jar or something he hand locks around it and I have to force the fingers open one by one. I hate doing that, it’s gross.’
My immediate reaction was something like ‘Aaaaaaaaaaaaarrrrrggghghhhggh!’ This was partly for the grossness and partly because you MUSTN’T do that. ‘Every time you force his hand open you’re damaging the joints more!’ I nearly screamed.
‘Well,’ says she with a shrug, ‘what else can we do?’
‘What treatment is he on for it?’
‘Oh he isn’t on any treatment. He’s not been to the doctor about it.’
Did I mention Aaaaaaaaaaaaarrrrrggghghhhggh?
Well … erm … that might be your answer about what else you can do about it then! Now I know some people don’t want to go on treatment and have some success with alternative therapy or diet, and the very best of luck to them, but he’s not doing that either. He’s just ignoring it and waiting for it to go away. What makes it worse is he has a very active, physical job and he really NEEDS to be able to do this stuff.
On reflection, perhaps that’s why he’s not going to the doctor – he’s terrified of being told that he shouldn’t/can’t carry on working, so he’s just trying to ignore it. I can kind of sympathise with that … but he’s still crazy if you ask me!
Tags: acceptance, aches, arthritis, flare, flare-up, joint pain, knee, neck pain, normality, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tiredness
I’ve been thinking a lot lately (although writing very little!) about what ‘acceptance’ of RA means, and also about redefining my idea of ‘normal’. I hadn’t managed, and still haven’t managed in fact, to get my thoughts into words, but I think this afternoon I came as close to ‘acceptance’ as perhaps I ever will.
As I was relaxing in the bath (sorry, probably ‘too much information, especially for those that know me!) and letting my thoughts drift along pretty randomly, I started to think about some of my friends and colleagues: one’s still coping with the aftermath of the Japanese earthquake; one’s recently widowed; one’s, to put it bluntly, losing her marbles; one’s spending this weekend picking up the pieces in her house, since large swathes of the downstairs flooring were dug up on Friday to find a leak.
Good grief, I thought – I’m bloody lucky! I have a loving (and all-round fab) husband, a terrific family (especially the nearest and dearest, including the recent addition of Mrs Mooseface), I have great friends, I enjoy my job, I have time (never enough time of course, but some time) to indulge my passions of messing around with textiles, drawing and pottering about in bits of nature, and although one could always be better off financially, the finances aren’t a complete disaster! The interesting point is that at no point during these thoughts floating over the bubbles did I consider, ‘Yes, but I do have this bloody disease to deal with, so perhaps not so lucky after all.’
It’s not as though things are going great with the RA at the moment either. I wake up every morning in pain, although it often clears for the most part within the hour. I go to sleep most nights in pain. I have pain and stiffness during every day. This is perhaps extra frustrating because for around four months between a flare in March and sometime around August, I felt as though I was pretty much fine, almost symptom free, nearly in remission. And yet, in a way, this on-and-off low-grade (for the most part) pain has just become the norm for me. It’s just another thing to put on one side and live with – and yes, I do appreciate I’m lucky that I can put it on one side at the moment, it’s not so bad that it stops me doing all those things I consider myself lucky for, but what interested me was the fact that it was so far into the normal, everyday that I didn’t even give it a thought when considering other people’s problems and drifting into comparing my life to theirs.
I think I might have once ranted that I will never ‘accept’ this disease, and don’t even mention the word ‘embrace’ in the same breath as rheumatoid arthritis, but perhaps this is acceptance, Penguin-style.
Tags: aches, flare, flare-up, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, work
We’re a nervy (or at least reticent) bunch when it comes to telling friends and colleagues about our RA, and often for very good reason! There’s probably a post born every minute about this. Two good recent ones are from Squirrel and Laurie at ‘Frozen Woman’. I suppose it’s partly that we’ve all had bad reactions from someone, somewhere at some point, and it’s once bitten, twice shy, but also, as Squirrel mentioned in her post, that it’s really hard to get people to understand that you can be fine one minute and flaring the next … and then fine again soon after, if you’re lucky.
What one doesn’t often hear is what a good laugh it can be trying to explain things to folks wot don’t know.
Well today I had to explain to the ‘temp boss’ (‘the boss’, who knows all about the whole RA thing, being on maternity leave) that she was on permanent coffee duty today because I couldn’t get up and down the stairs terribly easily. Now I was probably muttering a bit because this whole RA thing shouldn’t make me feel embarrassed, but it does, and I was feeling guilty (another dumb and pointless emotion that shouldn’t be related to being ill!) about not being able to get my share of coffees, and temp boss’s hearing isn’t as acute as it might be, and she was probably only half listening because her mind was on getting coffees, but anyway, somehow my saying, ‘I won’t be able to get the coffees today because I’ve got a bad knee’ followed by an attempted explanation of flaring etc. got translated in her mind as ‘I can’t drink coffee today because I’ve got a bad knee’ and the pair of us ended up in fits of giggles at her vision of all this coffee pooling somehow in my knee and causing it to swell up.
Well, laughter is definitely therapeutic, so for once telling a colleague about RA turned out to be more therapeutic than painful! I think the pair of us will be referring to any future knee flares as ‘coffee on the knee’ from now on!
Tags: aches, arthritis, doctor, flare, flare-up, GP, joint pain, joint stiffness, NHS, oral steroids, pain, prednisolone, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, steroids, stiffness, stifness
I’ve read a lot on the net about oral prednisolone and generally I’ve thought, ‘Hmm, glad I don’t need any of that then …’
Me and my big mouth …
Anyway, here’s why. I woke up Tuesday morning and my left knee, which is where I had the major, major, MAJOR problems in 2008 but which has been relatively OK since, was stiff … I mean REALLY stiff, as in couldn’t straighten, couldn’t bend. Oh well … it didn’t last long. It stayed a bit stiff until about lunchtime and then wore off. It didn’t hurt at all so I decided not to worry about it. ‘One of those things,’ I said to myself, ‘one of those little unpredictable joys of R.A. No doubt that’s the last I’ll hear from that knee for a year or two.’
WRONG! Woke up yesterday morning and the knee was really stiff again, but instead of wearing of by lunchtime it didn’t wear off all day! It still didn’t hurt so I thought, ‘Oh well, maybe it’ll be OK tomorrow.’
You guessed it – this morning it was really stiff again and it hurt (just a bit, but it did hurt). It also felt as though someone had strapped a great big lead weight around it, which says ‘swollen’ to me, although it’s not actually noticeably hot or inflamed. So I gave in and took the doctor lottery – i.e. ‘same day appointment with a member of the same day team. We can’t tell you who you’ll be seeing and it may be a doctor or a nurse.’
Well it was obviously my lucky day because I saw Dr. Locum Eye-Candy, and apart from being eye-candy he also seemed pretty switched on and sensible and (mostly) listened to what I had to say. OK, so he got slightly confused and when I’d said, ‘This started on Tuesday’ that somehow got translated in his brain to, ‘This is an ongoing problem I’ve had for months’ – but hey, we got that straightened out pretty quickly, so I’ll let him off! (Also perhaps I got a little confused. He was GORGEOUS – made it hard to concentrate on why I was there … Hmm, hubby will proofread this for me later. Perhaps I should take it out … nah … )
So here I am about to experience my first ever oral prednisolone – oh lucky me !
On the bright side, I am taking minimal quantities and assuming it works I will only be on it for three days, so I don’t anticipate any problems. In fact I anticipate a miraculous cure. Let’s hope I’m right. I don’t always hate it when my predictions come true!
Also, on the really, really, really sunny side, IT’S NOT AN INJECTION INTO THE JOINT! (Or indeed an injection into the bum, which is always mildly embarrassing, and would have been ever more so if Dr. Locum Eye-Candy had been giving it to me!)
Tags: arthritis, butterfly rash, diagnosis, lupus, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, ystemic lupus erythematosus
You may think RA is a hard one to diagnose, and I’ve often heard complaints as to how it’s overlooked by medics and the public alike, but Lupus (or Systemic lupus erythematosus to give it its full name) is RA’s poor relation in this respect. Lupus is another autoimmune disease, but this time with the autoimmune system attacking connective tissue – and of course connective tissue occurs in all the internal organs as well as joints, so it can cause inflammation of all sorts of parts of the body, resulting in a bizarre set of symptoms that is often not diagnosed as one problem i.e. Lupus, for many years. I suspect that one reason is that GPs etc. would only recognise it from the famous ‘lupus butterfly rash’ that occurs on the cheeks and across the nose, but according to Wikipedia (and I don’t know where they referenced it form!) only 30-50% of Lupus sufferers ever display the rash at all. Some research has been done now in America to show that Lupus might be caused by a malfunctioning of ‘micro RNAs’, which are things that white blood cells use to control the function of antibodies etc. This is research in mice, something that a lot of people would find uncomfortable but which I’m not going to get into a discussion about here; from a purely biological point of view, however, diseases in mice show a remarkably good correlation to diseases in humans, and the mice show a consistent pattern of ‘dis-regulated’ micro RNAs when they develop Lupus.
What that means is that, probably ten years or so down the line, if it gets that far*, there could be a simple diagnosis ‘kit’ for Lupus, where it can be clearly and easily diagnosed with a blood test or similar, whereas at the moment there is no such test – various tests can hint that it might be Lupus or some other autoimmune disorder, but then again it might not, but there’s nothing conclusive.
Like rheumatoid arthritis 1) it’s quite likely that there are a lot of people out there who are in the early stages and undiagnosed and 2) with Lupus it’s known that many people are either undiagnosed or misdiagnosed for many years before they are given a diagnosis of Lupus, so a test that is as conclusive as this sounds like it would be would certainly be very good news indeed.
We then have to hope of course that the test itself is not so expensive that no clinicians will actually pay to use it, but that’s another story, and probably one we won’t have to worry about for another ten years or so!