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!
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: aches, flu, flu jab, GP, medicine, neck pain, NHS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sniffles, sore throat
I have the post flu-jab sniffles, so presumably that means my immune system is going to respond and do its job in creating anti flu antibodies, which will be very handy if we have a flu epidemic this year … provided of course that it’s the ‘right’ flu. I had a slightly sore throat yesterday afternoon, post flu jab, and distinct sniffles this morning, but at least the big red lump on my arm is now a big red pinprick with a small red rash around it, and much less painful.
All more than worth it though if it keeps flu at bay! If the Flu Jab had a Facebook page I’d sign up to be its fan. (Oh lordy, perhaps it does … )
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.
Tags: embroiderers guild, hands, RA, Rheumatoid arthritis, silk, spinning, wool, yarnscape
I said in my last post that I’d post about the spinning day, so here we go!
I had a grand day out on Saturday – as previously mentioned a friend and I (and nine other ladies) had a ‘Spinning with a Drop Spindle’ workshop with Alison from yarnscape. Like all speakers for our branch of the Embroiderers Guild, poor Alison had to do a talk on the Friday night AND a workshop all day on Saturday. We work ‘em hard! She turned out to be a fascinating and engaging speaker though, and an excellent tutor.
I discovered the whole concept of archao-linguistics at her talk – something I want to find out more about … if I ever have time. Absolutely fascinating. You can trace a technology such as glass-making or weaving around the world, seeing when it was adopted into different cultures etc., because as it’s adopted, a culture wouldn’t have a word for it so would tend to use the word of the culture or person introducing it to them… so you trace the words and the rest follows from there. Cool!
We all had a great (if frustrating) time at the workshop on Saturday. I think learning spinning is inherently frustrating – there were an awful lot of ‘aaaah’s and ‘urrghs’ early on in the day, even though Alison very wisely started us of gently with plying and unplying ready-made yarns and only moved on to fibres later. I think I know why it’s called a ‘drop spindle now – not because you let it dangle as you spin; rather because the dratted thing keeps dropping! Fortunately the groans were followed by more and more happy noises as people finally found they’d got the hang of it … or in my case ALMOST got the hang of it!
I was quite concerned, given the very changeable but fundamentally damp weather we were having, that my RA would play up and make holding the spindle and yarn and fibre (in hands, knees, mouth and any other available appendage!) Thankfully it didn’t, and neither did my friend’s – she’s the one I’ve mentioned before who also has RA but who I actually met on at a quilting group. However, Alison says we need to practice ten minutes a day if we’re ever going to master this (or words to that effect) and my hands are playing up a bit today, so it’ll be interesting to see if it makes things worse or doesn’t make any difference. One good thing is that the spindle itself (this particular one that Alison provided anyway) is very light, and one of the things we spun was silk, which is of course incredibly light, but even a handful or so of wool isn’t exactly back breaking, so I think it might be fine.
I’m sure if things were REALLY swollen it would be completely hopeless but luckily I tend not to get really swollen; just a bit on the achy side now and then … or in fact now! Off to see what effect spinning has … I hope none!
Yup, twenty minutes of spinning, one dropped spindle and two broken threads (over twisting!) later, I can safely say it’s not hurting! In fact I feel slightly better for it!
Tags: aches, coping strategies, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, stress, tiredness, work
Someone just posted a request on tips for coping with RA on the NRAS Healthunlocked site that I mentioned previously, so I thought I’d ‘cross-post’ mine here, although I’ll add to them a bit because I didn’t want to hog the post on that site!
Not saying all these will work for everyone, it’s just what works for me!
- Make sure you take all your tabs and don’t be afraid to use pain relief too! You’re not proving anything by struggling through without paracetamol (or whatever). I also have a wax bath for my hands when I need it, a TENS machine and a front-fastening neck brace. Hardly ever have to use any of them but they’re there if I need them! (So long as I remember I have them!)
- PACE YOURSELF. It’s not good saying, ‘I’m just going to battle through with my usual routine’ because that’ll just make things worse. On the other hand, to stay positive I definitely don’t get into the thought pattern of ‘I mustn’t plan anything in advance, because RA might get in the way.’ Yes, it might, and it often does, but you still have to make plans and have things to look forward to.
- ACCEPT HELP! – but at the same time make sure to stay independent as much as you can. So for instance I make sure I get referrals to physio when I need them and go and nag the doc if I need to. And make sure I don’t turn away offers of help from good friends and colleagues. But at the same time I won’t just sit about and let people run around after me when I feel fine – tempting though it might be sometimes!
- TREAT YOUR FRIENDS RIGHT: I don’t think you can’t spend all the time moaning to your friends or they start thinking, ‘Where’s the Penguin I used to know? I don’t like this one!’ On the other hand, a REAL friend will at least listen when things are really bad, offer to help and MEAN it! If they don’t do that, then perhaps they’re not real friends anyway! They expect the same thing in return of course. If they don’t it then you’re not a real friend either!
- In my case I’m extremely lucky to have a wonderful hubby who, bizarrely, enjoys housework, so that’s one big burden taken away from me! I’d recommend a house-work loving partner to anyone with RA but I guess they’re pretty rare!
- SLEEP! Really make sure that you get enough sleep if you possibly can, and if you need to then try a herbal or a prescription sleeping thing, because getting enough sleep makes everything else better!
I strongly suspect that one could help oneself by being tidy and having a place for everything and everything in its place. This would negate the need to try to kneel down and search under the bed with bad knees, and then find whatever it is isn’t there anyway … However, as I’m the messiest person I know and was doing just that scrabbling under the bed thing only yesterday, I can’t put that in as a personal recommendation really!
Tags: acromoclavicular joint, flare, knee, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), shoulder, swelling
Well, I’ve had my physio – both knee and shoulder. Woohoo! The physio had no problem working on the knee once she had the doctor’s note!
As anticipated, the ultrasound made the knee a bit worse to start with but then much better! I had the ultrasound Friday morning and by Friday pm the knee was already greatly improved. Of course I SLIGHTLY over-did it on Saturday, but when the local needlework shop is tragically closing down but magically having a 40% off everything sale, what’s a girl to do? So then yes, I paid for it on Sunday. Today the knee is fine again though, having had a rest yesterday.
I also had ultrasound on both acromoclavicular joints (joint between collar bone and … well, not sure which bone really, but see below), even though when I saw the physio on Friday neither were that bad. They continued to be pretty OK really until this morning.
OUCH! Today they’ve been really, really painful, and definitely reduced mobility in the left one, although not dramatically. No good trying a wax bath there either, so I’m wired up to my TENS machine at the moment. Stupidly didn’t think to take it into work today. DOH! I must remember to take it in tomorrow … and ignore the strange looks!