Penguin: It is OK, once in a while, after a busy day, to be too tired and brain fugged to cook properly. It is OK to just shove a pizza in the oven. It is NOT OK to put the polystyrene base that the pizza comes on into the oven as well!
The National Rheumatoid Arthritis Society (NRAS) in the UK has a section on ‘Health Unlocked’ which is a networking site for patients and care givers for all sorts of conditions. The NRAS site on Health Unlocked is here. Some parts of the NRAS site can only be viewed by NRAS members (or which I’m proud to be one) but others are open to anyone who joins Health unlocked (which is free). The thing that most impresses me (even if they won’t link to my blog (or anyone else’s) presumably for fear of being thought to condone the terrible things we say ) is they have a ‘community blog’ where anyone who’s a member of NRAS Health Unlocked can just throw up a post – no mess, no fuss, no need for a wordpress or blogger account, and no need to worry about regular posting, statistics etc. You just post your thoughts, frustrations, feelings, requests for advice etc. and lots of like-minded people read them and post replies. It doesn’t matter if you only post once, and if you want you can post every day (or several times a day) then you’re very welcome to do that.
Of course it is, and it has to be, ‘policed’ by NRAS – so I suppose one isn’t quite as free as if you have your own blog. I probably wouldn’t, for instance, post factitious comments about my doctors and nurses on there! But it works – it really works… there’s lots of interesting content and discussions on there, and it’s also an opportunity for people who really don’t feel well enough to maintain a blog of their own (or who just don’t want to) to still get their thoughts heard.
I have to confess that my initial thought was, ‘Community blog? I don’t need that. I’ve got a blog.’ I was wrong – I’m hooked! 🙂
Once again, well done NRAS.
Tags: City & Guilds, embroidery
For anyone that’s been following this blog for a while, you’ll know I’ve been working towards a City & Guilds Level 3 in Embroidery – but it was touch and go for a while whether I’d complete the course because a) I got diagnosed with RA in the middle of it and b) I suddenly discovered after four years that I had to complete it in five years, so last year was a tad hectic!
Anyway, I have the certificate in my hot little flippers now – very exciting! It’s not a great certificate to look at, as certificates go. No spangley bits, no big red wax seals, no ribbon rosettes – but in spite of that it’s definitely going to go into a frame and up on the wall! It may not be something I ever use professionally, but it’s been a long, though fascinating, journey, and frankly I’m dead proud that I got there in the end!
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!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, medicine, methotrexate, NHS, pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), steroids, stiffness
This perfectly innocent post title, no double entendres intended, is supposed to set the 1950’s scene for you. Maggie (friend and frequent commenter on this blog) has always said that the town where I live is like stepping back into the 1950s, and generally I reckon this is a pretty good thing. The 1950s is a pretty nice, cosy, friendly place to live; that is until you get hit by … da da da daaaa, 1950’s Doctor Man.
Alas, the knee has continued to flare and I decided, after having a lot of stiffness and pain yesterday, that I really should go back and say a) the steroids worked but they ain’t workin’ no more and b) can you ask the physio to have a look at the knee please? So I did. Of course, as I’ve mentioned before, if you make a ‘same day appointment’ (and the choice is same day or 2.5 weeks away if you’re lucky) then you can’t choose your doctor; you just see whoever is available.
Now when I did this two weeks ago I hit the jackpot with Dr Locum Eye-Candy, but alas, this week my luck ran out and I got 1950s Doctor Man. Now don’t get me wrong, he was pleasant enough in a dried-up old stick kind of a way, and true to his 1950s roots he did listen patiently and he did actually bother to examine me properly (two things you certainly can’t count on these days in the NHS!), but then the downside of being in the 1950s kicked in, and I got the 1950s lecture about RA. I thought things had come on a lot since this kind of thing: ‘Well, that’s the nature of the disease. It’s a progressive disease I’m afraid and it will flare now and then. Now, I’m not trying to depress you but really that’s just the way it is and there’s not a lot you can do about it. You’re on a high level of methotrexate and other medication already, so … ’ And so on, and so on, for about five minutes.
I’m not actually saying he’s entirely wrong, by the way – fundamentally that’s probably true, but he didn’t make one single suggestion about sensible things I could do. OK, I wasn’t expecting him to suggest Reiki or a gluten-free diet or anything else that your average 2011 British GP would consider a bit ‘far out’, but what about, for example: exercise … or rest, apply heat … or cold, consider a steroid injection in the joint, come back if it gets worse, have physio, get hubby to do all the cooking, washing up, shopping etc. for the next few weeks. <Grin – of course he wouldn’t suggest that! Not the done thing at all in the 1950 to have a man doing all that!>
I must admit I wasn’t feeling very ‘with it’ and I damn near forgot to actually ask what I’d gone in to ask, which was since I was doing a 50 minute round trip every week for ultrasound treatment on my shoulder at the moment with the physio, could he please ask the physio to treat the knee too? Finally I did remember, and, give him his due, he agreed immediately and not only that but he actually wrote me a note (with his very smart 1950’s fountain pen) to take in with me, hopefully circumventing the need to wait five weeks for the next official appointment for a knee referral, by which time the flare will probably be over.
I did also ask him whether I should be exercising it or resting it, and he said definitely resting it … but is this right, I wonder, or is this just more 1950s medicine. Not that long ago the only recommendation for RA was ‘bed rest’!
Tags: aches, arthritis, flare, flare-up, joint pain, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatology, stiffness
I posted a while ago about how the physios at the hospital ‘in line with the private sector’ were limiting appointments now, and generally becoming officially less flexible and less helpful. Well I had further proof of how in line with the private sector they aren’t on my last visit.
When I previously went for physio I had been referred for my shoulder, but when the knee flared up, knowing it was all RA, she did some work on the knee too. Now, and this is no way the fault of my physio herself I should add, it’s a typical NHS ‘powers that be’ decision, even though I couldn’t bend or straighten my knee fully, had been to the GP, had got oral prednisiolone and had had it confirmed that my knee was flaring, she couldn’t do any ultrasound on my knee at all. Because it was too inflamed? Nope. Because she wasn’t sure it was the right treatment? Nope. Because I had been referred only for my shoulder!
Fortunately the knee is actually very nicely on the mend by itself, and equally fortunately the ultrasound on the shoulder (actually the acromoclavicular joint, but I can’t keep spelling that!) has helped enormously, so not THAT much to whinge about. Also I have a cunning strategy up my sleeve if the knee doesn’t mend fast enough or gets worse again. I don’t know if it’ll work but my cunning plan is to phone the GP, explain the situation and get them to give me the referral letter, so that I can walk into the physio next time and say, ‘Here’s the letter – can you do my knee now please?’
Otherwise it’ll be the usual ‘five weeks from referral’ and I’ll be going in for six sessions for my shoulder, which will be over before the referral for the knee is officially through. This is not only a problem because if the knee needs doing it needs doing a.s.a.p; it’s also an issue because it’s 50 mins to an hour driving time to and from the hospital IN WORK TIME! So glad the NHS are working towards keeping everyone in work! HAH!
Just a quick update – my knee has improved incredibly fast after being on the steroids. In fact it improved SO fast that I can’t help wondering if it was the steroids if it would have improved anyway! I suppose I shall never know!
It still hurts now and then and it might be a tad swollen but I have full mobility in it and full ‘bendability’ for want of a better word, so far as I can tell.
Had a most enjoyable visit over the weekend from my friend Maggie, and we even managed some nice (if short, and slightly drizzly) country walks, without my knee playing up at all! Hurrah.
Physio tomorrow – assuming she actually feels it’s OK to do something this time!
Tags: aches, acromoclavicular joint, knee, physical therapy, physio, physiotherpay, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoulder, steroids, stiffness, ultrasound
Well … half-an-hour’s drive, ten minutes or so waiting, thirty minute consultation … and the answer turned out to be, for the moment anyway, not to physio! Aaaaaaargh! I’ve only waited since January for this appointment. Still, there were perfectly sound reasons not to physio – and at least I had a fun time in the waiting room reading old copies of National Geographic!
There was one small thing I hadn’t accounted for … I’ve just started a (very) short course of oral steroids for a very swollen knee, and the physio that works for me, or has always worked for me in the past, is ultrasound. Obviously the steroids are busy trying to reduce the inflammation, and equally obviously that is intention of most treatments including the ultrasound. Aye, but there’s the rub … (talking or rubs I must rub some of that nice ‘Nature’s Kiss’ ointment into my knee … I keep forgetting about that … but back to the main point), the way that ultrasound works (putting it simply, which is the only way I know!) is that it apparently INCREASES the inflammation quite rapidly in order to trigger the body to go ‘ooh, that’s inflamed’ and kick into place a process for doing something about it.
So … if I had ultrasound, my physio basically thought that I might well be either inadvertently cancelling some of the steroid effects or, at very least, wasting my time because the steroids might counteract the ultrasound without it being able to do anything.
Now the physio wasn’t at all sure about this, and neither am I, but we decided it was better not to risk it so I’ve got to go back again on Tuesday morning!
The more I think about it the more I’m not convinced by this whole argument … but I’m way too tired to work out why now, so I’m off to bed and I’ll give it some thought tomorrow!
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!)