Tags: arthritis, blogging, guest blog, Rheumatoid arthritis, the patient experience, Tiny Cat 2
Possibly less exciting than ‘baby’s first tooth’ or in our case perhaps Tiny Cat 2′s first brave trip into the living room, but still pretty exciting. I have a guest blog over on The Patient Experience … so a quick hello to all you new readers, and I hope some of you will stick around!
I also wanted to post a new take on the age-old moan of just about every RA victim/patient/sufferer I know: the frustration of trying to explain it to people. I think every RA blogger must have blogged about this at some point, too. I know I have. But here’s a new take on it that I think is lovely, from Carole, who commented on this blog recently. Talking about the number of people who don’t understand about RA (and in her case MS too!) she said: ‘Hopefully they will remain blissfully unawakened.’ A very nice, charitable way of looking at it, I thought!
The Patient Intelligence Panel (PIP) is an online research platform for chronically ill patients (although I wouldn’t consider myself as chronically ILL, even if I do have a chronic condition), which focuses on research into quality of life (which makes a nice change in itself!). They are supporting NRAS by donating £1 for every person who signs up to their surveys, and for every survey you complete.
If you have RA you can register with PIP Health here.
Register for PIP Health by entering your details on the right hand side of this page – it’s free! About once a month, you will receive short surveys about your experiences of Arthritis. All surveys are voluntary, but we will donate £1 to NRAS for every survey you complete.
Please do, because NRAS do really great work to raise awareness of RA in the UK AND to help people who have it.
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
There can’t be many places, perhaps not even Ebay, where you can bid for anything from a Florida Disney holiday to a ‘repurposed’ dog collar made from a man’s tie, and raise money for an arthritis charity at the same time. Some of my favourite things so far in the auction (which opens for bidding on 25 November and closes on 30th) are this Italian handbag (only they insist on calling it a purse, because the auction’s in America, but don’t panic, they ship internationally and the shipping is included in your final bid amount), these pretty Murano glass earnings and this batch of jewellery-making books generously donated by the founder of the charity that the auction’s in aid of. God, I’m such a girlie. Don’t worry though – if you’re not a girlie there’s still plenty there for you – autographed sports prints, wine, art, heaps of stuff. And hopefully, wherever you are in the world, if you need it in time for Christmas it will just about get there!
Everything in the auction has been donated by someone affected by autoimmune arthritis in some way, and each lot has the story of why it’s there in the auction.
So what is this all in aid of? It’s IAAM, the International Autoimmune Arthritis Movement. And what’s that, I hear you cry. Well if you’ve been reading this blog for a while (or many others out there on the net) you might have an inkling, but if not then they’re a fairly new charity all about raising awareness and resource sharing specifically around autoimmune arthritis diseases.
100% of the auction proceeds go straight to the charity, so if you want to raise awareness of autoimmune arthritis AND treat yourself (or someone else) to something nice, this is the way to do it. Retail therapy without the guilt!
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: aches, arthritis, doctor, flu, GP, immunosuppressed, injection, jab, joint pain, medicine, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve been noticing a few improvements around the whole flu jab situation this year. In the previous few years I have a) struggled to book in for one because the surgery receptionists didn’t know about immunosuppression b) been disgusted at the ‘cattle market’ approach to the flu clinic, which I thought was restricted to our rural Norfolk surgery, but then found, via Helen at Pens and Needles extended to Canada too!
Here’s the way it used to work: You fight to get into the clinic in the first place, get your slot (which if I remember rightly was ‘morning’ or ‘afternoon’) and then turn up to join the queue extending all around the waiting room and out the door. You are told to be ready and waiting with your arm exposed ready for jabbing, even though the surgery is freezing because the door is permanently open due to people standing in the entry waiting for flu jabs. The receptionists ask why you were there if you looked under 70, and are puzzled when you tell them … but let you through anyway. You have now been singled out in front of hundreds of somewhat elderly people who are now all staring at you and wondering if you’re trying to con the system, so you feel great! You get to the far side of the waiting room eventually and are asked to ‘fill in this form’. The form has nothing to do with the flu jab but asks if you smoke and would like anti-smoking advice. (Apparently doing this meant they could tick a box somewhere and claim extra funding for ‘offering anti-smoking advice!) You get through to a corridor where all the doors of the rooms are open and wander about until someone says ‘in here’. You go in, and with the door still open and other bewildered patients pottering about in the corridor behind you, you’re asked, ‘Why are you having the flu jab?’ You tell them … again. They say, ‘OK’ and jab you, and then follow that up with something like, ‘Oh – hope you aren’t allergic to egg or pregnant – should have asked you first.’ Fortunately I was neither!
Here’s how it is now: You phone up and say you need a flu injection. The receptionist says fine, she’ll book you in. She goes to your record, sees you’re not elderly and says, ‘Why?’ You say, ‘Immunosuppressed.’ She says, ‘That’s fine,’ and books you in. To your astonishment you’re given an actual time, 3:10, not ‘afternoon’. Then later on in the week you find out that some of your friends have already had their jabs at the surgery and they’re doing it like a proper clinic – called up individually, closed doors, proper checking that it’s OK to give you one etc. Wow – you’re impressed!
You go for your regular methotrexate blood test and notice a big poster in the surgery window about, of all things, getting the flu jab if you are immunosuppressed! After a general rheumatology chat, taking bloods and general chitchat the nurse says, ‘Have you had your flu jab yet?’ ‘No,’ you say, ‘ but it’s booked in for next week.’ ‘Would you like it today?’ she says. After picking yourself up off the floor, rubbing your ears and asking her if she could please repeat herself because you thought she’d just offered you the flu jab today, and finding that in fact that is what she said, you say, ‘Yes please.’ After she’s sucked the appropriate amount of blood she goes and gets the flu injection. ‘I don’t know if I can roll this shirt up far enough’ you say. ‘ I wasn’t prepared for this.’ ‘That’s OK,’ says the nurse with a grin, ‘We can do it through the shirt. On second thoughts better not, the needles are so flimsy we’re having trouble just getting them through the skin!’
Aha – you think – I’m back in the land of normality now! Damn, I was enjoying this strange fantasy world where the surgery actually seems to be doing flu jabs in a sensible and logical manner.
But then you find you can roll up your shirt and in fact the needle goes in fine, if somewhat painfully!
‘Right,’ you say, ‘I suppose I’d better go and cancel my appointment for next week at the front desk.’ The nurse smiles and says breezily, ‘Oh no need – with this new database system we’ve got I can do it really easily from here,’ and she does!
Now you might think surely that wasn’t actually that much to ask – you might say, as ‘brother Penguin’ did some time ago, that your surgery has been doing this for years, but when you’ve become conditioned to being in the cattle market scenario for so many years, this just seems incredible, fantastic, too good to be true …but it’s not. It really happened.
Incredibly the nurse told me that some patients had actually complained ‘We wanted to come to the big flu clinic like last year!’ There’s no pleasing some people!
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.
Is that an oxymoron? I think it might be!
Anyway, the folk over at IAAM have asked us to write about the onset of our RA, so here goes.
Well … erm … actually … I don’t really know when it started. I know when I got diagnosed, but that’s not entirely the same thing. I was 39 and my general health was fairly ‘carp’ at the time: I had fibroids which were giving me terrible problems, and I felt tired all the time, and sometimes when I got up in the morning I felt like I’d been running a marathon in the night. However, given my usual sleep patterns, hubby suggested I probably had! The thing is that even before that, for years and years and years, I’d had periods of feeling ‘generally carp’ – tiredness, achyness, and years of sinusitis culminating in a sinus operation in 2005 which actually didn’t do much good. Interestingly, since I’ve been permanently on anti-inflamatories for the RA, the sinuses are much better than they used to be … but that’s another story.
I really enjoy country walks too, and I had been getting pains in my feet that would last and last after the walk was finished. People always talk about ‘taking the weight off your feet’ and it was only when I finally got RA treatment that I realised what they meant. The phrase used to puzzle me because I would sit down and they would STILL hurt for hours. I thought that was the same for everyone. It’s only now that I realise that that was part of the whole RA thing. Now, in a good phase, if I walk for ages and get a slight ache in my feet, I sit down and it goes away. (Of course in a bad phase they just hurt most of the time, but ce la vie!)
I was just living with all this, and having a moan to friends and hubby now and again, but since I’d had this going on for years, and since I’d seen a specialist in around 2001, who’d told me I was depressed, which couldn’t have been further from the truth, I’d given up on doctors!
But then I started getting these pains in my wrists. Now THAT was something to go to the doctor about – I run a small business doing transcriptions, and transcriptions are, when you get down to the basics, typing, and typing is something you can’t do so well when your wrists hurt all the time. I was also getting intermittent tingling in my fingers. I was worried it was Carpel Tunnel Syndrome and thinking I couldn’t afford time off to have the op!
So I went to the doctor, and saw a wonderful GP, who sadly didn’t stay at our surgery more than a few months, who investigated carefully and said she needed to know which fingers I was having problems with. I said I wasn’t sure! Sounds dumb, doesn’t it, but I actually had to go away and come back when I’d worked out which fingers it was! Turned out that it was the wrong fingers for carpel tunnel but the right fingers, potentially, for RA. I think I was incredibly lucky that the doc actually thought of this, probably because she was fresh out of college. I didn’t have any very obvious swelling or redness, although I did have tenderness, and I think similar stuff had been missed before e.g. in 2001!
So she said, ‘It’s probably not RA, but worth checking’ and I had it checked … and to cut a long story short, it was … obviously, or I wouldn’t be writing this blog!! Once she’d started the ball rolling thing went fairly smoothly and I was soon on treatment, although it took another year to get back on a fairly even keel because I started on hydroxychloroquine and it didn’t do it for me, but I had to try it for three months to make sure, then increase the dose for another three months, then try MTX low dose for three months, then increase that … and finally … BINGO! Much better Penguin!
I still have flairs, and I still have days where I feel like I’ve run a marathon in my sleep, but they’re far fewer than they used to be.
As to weight, apparently there’s debate raging in the US at the moment about whether RA causes obesity. For more on this, which was all news to me, see Amanda’s blog, All Flared Up, where she’s flaring up against ‘Dr Phil’ who’s someone else I hadn’t heard of!
Well, I can say for certain that I wasn’t clinically obese when I got diagnosed, although I was overweight, and have been almost all my life! I know quite a number of people with RA and the vast majority of them (with one exception I can think of) have been slim to skinny! Certainly in our local Norfolk RA group I definitely felt I was the fatty! One lady said, when I mentioned it, ‘You wait till you go on the MTX, I was bigger than you and look at me now!’ She was beautifully slip. Oh goody I thought, a useful side-effect of MTX! But alas, it hasn’t done it for me!
Sorry, this is a bit of a ramble but I’m in a rush because I was so sure yesterday that the 12th (World Arthritis Day) was Thursday, and I was going to write this blog tonight for posting tomorrow! Oops!
Tags: pain, paracetamol, RA
The eight-year-old sense of humour is as strange and wondrous thing. I remember thinking, ‘Where’s the paracetamol?’ ‘The parrots ate ‘em all’ was absolutely hilarious, back in the day. It’s not quite so funny when you find you’re living on the darned things though, especially when all of a sudden you go to your paracetamol stash and find that the parrots do indeed appear to have eaten them all!
I’m having a bit of a flare (fizzle, flare-ette, floret?) this week – not what I needed the first week back from hols, but heck, it’s not what we need any time, is it? It doesn’t help that I have a slight cold on top of it, so I’m bunged up and headachy too, and I’m definitely having the maximum number of paracetamol allowed every day, which is why, although I tend to buy some every time I’m in a chemist or super market, just in case, I went to my paracetamol stash today and found the cupboard was bare!
They do nothing at all for inflammation and swelling, but I’m already taking everything I can for that side of things and they really DO help with the pain!
Thank goodness I’m the world’s untidiest penguin – and I was able to rummage some up from behind my bedside table, in my handbag, in my lunch bag … and now I come to think of it there might be a couple in my toilet bag! Still, another trip to the chemist is required tomorrow I think! Annoyingly I was there only yesterday but, for the first time in ages, completely forget to buy any paracetamol!
Off to take the bedside table stash and go zzzzz…..