Tags: arthritis, consultant, diagnosis, doctor, flare, flare-up, hospital, knee, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?
Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.
So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.
So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.
So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!
Well, back to crossing those flippers and hoping it never comes to that!
Tags: healthline blog awards, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, rhuematoid arthritis warrior
Good news – there’s a rheumatoid arthritis blog currently in the top FIVE of the Healthline blog awards. The bad news? Well, I could say, ‘It’s not me’ but hey, I post a few times a year and witter on about biscuit making, so I think Kelly at Rheumatoid Arthritis Warrior, who really does work at making an informative and blog for suffers, and increasing awareness of RA, deserves the kudos more; no, the bad news is it’s not number one … yet. So please do go and vote for her!
And do bear in mind that while you’re at it, you can vote for me too … and all my online ‘mates’: Wren and Andrew and Carla and all the folks in my blog roll; because you can vote for as many people as you like each day, although you can only vote for an individual once a day!
And if you have an RA blog with a handful of votes, like me, and you know you’re never going to get to where RA Warrior is, why not get behind her as well and get your readers voting for her … or her and you!
Tags: aches, arthritis, fatigue, flare, flare-up, joint pain, knee, R.A., RA, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, work
Today was my first day back at work – knee flare seemed to be pretty much over: the swelling had gone right down, it didn’t feel terribly hot, but it was achy now and then. Hurrah.
However, now the other knee had started to ache – RA, or just a reaction to me walking ‘funny’ because of the left knee flaring? I don’t know – but to add to the mix, today being my first day back at work meant it was also the first day since the holidays where I haven’t spent a significant amount of time with my feet up – and I’m really feeling that this evening, as I sit here typing with an ice pack clamped between my knees, and the heat pack waiting for me in bed!
Here’s the thing though – we’re moving offices tomorrow!
Fortunately hubby has the day off and has been volunteered, slightly unwillingly but with good grace, to be my feet, and the facilities manager in the building is also going to help us lug stuff, and then my two colleagues are both fairly fit … so hopefully I can pull out a conductor’s baton from somewhere and just direct operations!
Tags: aches, arthritis, flare, flare-up, joint pain, knee, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
Well, whadayaknow? A knee flare turns out to be some kind of strange ‘dance’ move: you can see it here. Unfortunately it’s also what I’m having one of right now …. I’m dancing too: from the freezer to the microwave and the microwave to the freezer … mostly on one leg.
It started on Boxing Day evening – that’s Wednesday for those outside the UK! Just mild stiffness going upstairs – didn’t really think too much about it. Progressed to serious stiffness Wednesday morning which I assumed would pass of during the day. It didn’t. It got worser and worserer. By Wednesday evening it had started to be painful as well as stiff. I took paracetamol and grumbled.
Thursday my mum was doing a lunch for us and some friends. Splendid meal, good company but my sociability somewhat dampened by knee pain. That evening Mum asked if I did ice-packs or heat packs? DUHHH! Why oh why do I always forget those things?!
Pretty much since then I’ve either had an ice pack or a heat pack on it, or I’ve been moving around on it. It makes a huge difference. I can’t believe how stoooopid I am sometimes! But on the bright side, at least it’s starting to mend – or if it isn’t, then at least I’m starting to feel better.
I have had a bit of a tidy-up of my blogroll. I’ve removed most of the blogs of people who haven’t posted for over a year – but if you’re someone who just posts really infrequently but still has a ‘living’ blog, and you’re miffed that you’re not on there any more, just drop me a note and I’ll put you back on!
I have also added a few ‘new’ blogs – not new at all really, but new to me, in particular a couple about other forms of arthritis than RA. And I have finally got around to adding Carla, who should have been added AGES ago – sorry Carla, but at least I got there in the end!
Want to recommend a blog that’s not on here? I’d be delighted to hear from you. It might take me a while to get round to adding it, but I will do so … one day!
Tags: RA, Rheumatoid arthritis, shoulder, shoulder injection, tendon, tendonopathy
Well, I’ve had my second shoulder injection. It was a week or so ago now, and it’s definitely working. Things aren’t perfect, but they’re a heck of a lot better than they have been.
This was an injection into the tendon, not the joint, guided by an ultrasound scan so they could see exactly where the steroid injection needed to go.
The advice in advance with this one was don’t drive and do rest for 48 hours, so hubby kindly took me into the hospital on his day off. We decided to go a whole hour early in case of parking difficulties, so of course we parked with ease! But when we came out an hour later, it was heaving and I was really glad we’d made the decision to go early.
I don’t know why they bothered sending out instructions in the letter to wear loose and washable clothing, since it turned out I had to take off the top half and put a gown on anyway, because my bra strap was in the way! That was only mildly embarrassing, when the gown flapped about because the nurse couldn’t find the tabs to do it up!
Then I sat down facing the radiologist and the screen, as instructed, and he scanned the shoulder with ultrasound. He confirmed the tendon was indeed inflamed, pretty much exactly where I thought it was, but happily not torn. Then he got me to put my arm in an incredibly uncomfortable position and keep it there, and took out a scarily huge needle. ‘Focus on something else, Polly’ I told myself as it came towards me.
‘Just a little scratch,’ said the doctor, cheerfully.
It was more than a little scratch but not madly painful. ‘Don’t think about the BIG, SCARY NEEDLE Polly’ I said to myself, ‘ la, la, la, think of little gambolling lambs and mountain streams. La, la, la …’
‘Look,’ said the doctor cheerfully, ‘You can see the needle on the screen!’
Mmm, thanks mate, just what I wanted! And sure enough, there it was, a long, straight stiletto floating about in the various incomprehensible (to me) wavy lines of the ultrasound. Actually it was quite fascinating to watch – for a bit. Then it started to jigger about alarmingly, and whether it really was jiggering about inside me, or whether I just thought it was and it caused me to tense up, I don’t know, but suddenly it was really, really painful. I must have made a that’s really, really painful face because the doctor realised it was hurting and said he’d stop for a bit.
Now I don’t know about you, but when I have a ruddy great needle in part of my anatomy I’d rather just press on, so to speak, and get the job done, especially if the alternative is to sit and rest for a minute with the needle still stuck inside me – so I said no, it was fine, and he carried on. Actually the pain did diminish, so perhaps I had just tensed up for a bit.
While this was going on another doctor came into the room and apologised for having been absent. ‘No worries,’ said the radiologist, ‘you haven’t missed anything. It’s just a shoulder. Boring.’
I gave a little involuntary chuckle, which went straight over the doc’s head but the nurse quickly added, ‘Not that we’re saying you’re boring!’
At that the radiologist did have the grace to look mildly embarrassed, and he said, ‘Oh believe me – it’s good to be boring! We do hundreds of these procedures so I know exactly what I’m doing. You don’t want something rare!’
Well, that was fair enough I thought.
‘By the way,’ I said, ‘when the instructions say “rest for 48 hours,” what exactly does that mean?’
‘Whatever you want it to mean,’ said doc with a kindly smile. ‘There’s no scientific basis to it. Just see how you feel and what you feel like doing.’ So I did. They day after the injection it didn’t hurt much so long as I did nothing but veg about and be a couch potato, but it did hurt if I did ANYTHING with it. So I didn’t do anything with it. I watched an entire season of Dollhouse (thanks Maggie) and let hubby wait on me when he got home! The following day I thought, ‘I’m fine – I’ll go into work’ so I did.
MISTAKE! Two hours at work and my shoulder was in a lot of pain – so I went home again. (Advantage of being the boss!) By the next day it really was much better and it’s continued getting better and better so far – so flippers crossed that will continue!
Tags: Christmas, cookery, cooking, eggs, German Christmas biscuits, zimstern
Health warning: This post has nothing to do with health.
Why do I do it? Every year at round about this time, fooled by a mixture of Christmas Spirit and the Great British Bake-Off perhaps, I make the same mistake: I believe I can cook … or at very least bake. I’m sure I used to be able to bake, once, a long, long time ago, before hubby, before RA, before old age … well OK, middle age, but I’m feeling old right now. Maybe I’m just imaging it though. I know I did some nice scones … once …
Anyway, my one cook-athon of the year is New Year’s Eve and I fancied making some biscuits as well as my usual main meal.
This year I’d carefully ruled out all the things I knew I couldn’t tackle on the cooking front – out went anything to do with melting sugar (after several burned saucepans and unbelievable pongs over previous years); out went anything to do with melting chocolate, (after several attempts at mousses that turned into gritty messes). But this recipe, courtesy of The Telegraph, looked simple enough.
Even though it looked simple, I thought I’d better try it out in advance.
I think I was mistaking brevity for simplicity. The brevity, I soon realised, was due to the fact that the recipe was written for people who know how to cook. How silly of me to think I was one of them. Mind you, I probably didn’t help myself because I was using our new food processor.
You start off in this recipe by making a meringue mixture. I’ve done that before. I’m sure I have. Heck, I make Snowqueen every year*. But I’ve always used a hand whisk.** This time I wanted to try out the new toy. It has a main bowl, a midi bowl and a mini bowl. Knowing how eggs fluff up when they’re whisked, I thought I’d use the main bowl. Hah! Other people’s eggs might fluff up – mine sat there for five minutes looking, well, runny – just like they had five minutes before straight out of the egg. Funny, I thought, it’s really not whisking very fast at all. I thought it would go much faster than that.
‘ Doesn’t sound well,’ commented Hubby, from his perch in front of the telly.
I gave it some thought and decided that it clearly wasn’t working in the main bowl, so perhaps I should try the midi bowl. I put the midi bowl on the kitchen counter, took the main bowl carefully off the food processor and tipped the egg into the midi bowl.
At this point it would have helped, really helped quite a lot, if I had remembered that there was a hole in the middle of the bowls for the motor to go through.
I didn’t quite have egg on my face, but I did have it all over the kitchen counter, on the glass counter saver (which didn’t save the counter) and dripping onto the floor, which hubby had only washed a few hours before.
Taking a few deep breaths and staying calm, so calm that hubby doesn’t actually even know about this bit, and won’t until he reads the blog, I decided there was still about an egg’s worth left in the bowl, so got another egg out of the fridge, added the white to the midi bowl and plugged the whole lot into the food processor Or at least that’s what I thought I’d done. It went whir, whir and nothing moved. At this point I dragged hubby away from Warehouse 13 to come and investigate. We stood scratching our heads and trying to make the various bits of whisk look like the whisk in the instruction book, which, as is the way of these things, is nearly all picture with very few words. After much head scratching and some hilarious attempts at combining the bits, I realised that a key component was still attached to the main bowl whisk, now sitting in the sink.
So I whisked the eggs into soft peaks. They made beautiful soft peaks. Then I added the sugar. Well, it doesn’t tell you in the Telegraph recipe that you have to add it a bit at a time, because it’s written for people that can cook. If you don’t add it a bit a time, the whole lot collapses into a runny mess.
It collapsed into a runny mess.
‘You’d better see if Delia has a fix,’ suggested hubby. I knew there were no fixes when a whisked egg has un-whisked itself, but I thought I’d have a look anyway. Basically her advice boiled down to ‘Don’t under-whisk the eggs – but don’t over-whisk them either or they’ll all collapse. And add the sugar an ounce a time, whisking all the time.’
Nothing else for it but to start again. Hubby, supportive and sympathetic, suggested I stopped and had a coffee first, but no, I knew better, I wanted to carry on.
So, more eggs, this time into the bowl without mishap, more nice soft peaks.
‘Make sure you can turn the bowl upside down and the eggs don’t fall out,’ says Delia. So I did that. Only I’d forgotten that the whisk was in bits and a bit fell off when I turned the bowl upside down. I made a grab for it. It was HOT. I managed not to screech so hubby doesn’t know about that bit yet either. Still, things were looking up; the eggs looked lovely. Woohoo.
I started to add the sugar a little bit at a time. I was really careful. Really, really careful. Itty-bit at a time – whisk, whisk, whisk – another itty bit. I kept checking. It looked lovely. Glossy, peaky, beautiful … I kept adding sugar, I kept whisking …
Can you see what’s coming? I was being so careful that I’d completely forgotten the ‘don’t over-whisk them or they’ll collapse’ bit.
It collapsed into a runny mess.
On top of that the kitchen was in an unbelievable state – it looked like it had snowed indoors. If you’ve ever cooked with icing sugar you’ll know what I mean. Even enormous cat was liberally decorated with icing.
I threw a wobbly – hubby supportive and sympathetic – ‘There, there penguin, it’ll be OK.’
‘IT WILL NOT…’ (I’m a real charmer when I get into a bad mood!) ‘ONCE IT’S GONE, IT’S GONE!’
‘Well time to stop now. Sit down and have a coffee’
‘LIKE I HAVE A CHOICE? We’ve run out of BLOODY EGGS!’
So I had a coffee – with ill grace! And hubby, bless him, quietly went and washed everything up before I even realised what he was doing!
Maybe it’ll be Snowqueen for New Year’s Eve pudding again then …
Or maybe I should stick to what I do know how to do: crochet.
* A meringue-based ice cream. I’d forgotten that I actually buy the meringues ready made from the supermarket.
** Later realised this was to whip the cream for the Snowqueen. Cream, I can do.
Tags: arthritis, flare, flare-up, joint pain, pain, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, thumb
I’ve been cruising along very nicely thank you for the last few months. I made the mistake of getting used to it I think … Great, I feel fine … let’s get on with stuff then. Well, you only live once, people to see, things to do, natural history surveys to complete, courses to go on, friends to see … Spanish to learn, embroidery competitions to enter.
Next time I see my rheumatologist, I thought, perhaps we can talk about reducing the MTX.
When will I learn?!
It started a couple of weeks ago with sudden, severe pain in my right thumb. Then it went away. I didn’t see it as a warning sign – I’d got too used to being footloose and flare free. Then it came back … and then other bits started to hurt too … ooooooooh-k, maybe this is a flare, I thought.
And it was.
Fortunately not a terrible one – one of my flare-ettes/aka fizzles, but bad enough to act as a little reminder. It’s over now … I think … but I’m back to being careful …
Well, apart from botanical drawing class an hour’s drive away on Saturday, more natural history recording on Sunday, interviewing tomorrow …
Tags: muscle pain, shoulder pain, tendinopathy, tendonitis
Thankfully this one will NOT be in my knee – the one in the knee was possibly the most painful experience of my life so far – but then again it was short-lived and it did cure the problem. This one, though, is going to be in my shoulder.
If you’ve been reading the blog for a while you’ll know I’ve had problems with my shoulder, which turned out to be non-RA related, for a while. I’ve had several physio sessions and a variety of exercises, but although it seemed to be getting better for a while, it suddenly got worse. It’s ‘tendinopathy’ (and that does appear to be the right spelling). It’s the chronic version of the probably more familiar (certainly more familiar to me) tendonitis; in other words it’s chronic inflammation around the tendons, in this case those that attach the rotator cuff muscles to the shoulder bone (but don’t ask me which shoulder bone because my anatomy isn’t great!)
Anyhow, since physio isn’t working, it’s an injection for me. I can’t say I’m looking forward to it, but it’ll be nice to be able to do my bra up myself again!
Thanks to the weird and wonderful workings of the NHS though, the physio has to write to my GP to ask her if she’ll give the injection; I then have to phone my GP in about a week (to give her time to receive the letter) and ask her if she’ll do it, based on the letter. I think she has the right to say no, based on nothing more than the fact that it’s the hospital physios recommending it, and it will be her budget if she does it, so she can send me back to them. I’m not sure about that, but reading between the lines I think that’s how it works.
Since the doctor is a couple of minutes down the road and the physio is a half-hour drive away, and since it hurts the shoulder to drive, I’m hoping common sense might prevail. We shall see. NHS Wonderland Part 4 coming up, I fear!
Remember those blood tests and that enormous urine sample I had done last week? Well I hadn’t heard anything and I thought I’d really like to know what the heck was going on. After all, these tests were both ‘for immediate processing’. If the lab doesn’t get on with it the tests are invalid. So logic (this is logic outside Wonderland of course) would dictate that the results were available last Friday.
Once the results are produced they have to go back to the department that instigated the tests. This department is in the same hospital as the laboratory. OK, it’s three floors up, but it’s the SAME BUILDING. We are now in the electronic age. In the normal world the lab would process the results, email them to the department that wants them (same organisation, same building, same server I expect). The department would receive them and, when the patient phoned up, they would be able to inform the patient of the results within a couple of days.
Now for the great British Health Service version: I had my monthly methotrexate blood test on Monday at the GP surgery. ‘Wishful thinking I expect,’ I said, ‘but I don’t suppose those test results have come in?’
‘When did you have them done, love?’
‘Last Friday, but they were for immediate processing, so I just wondered …’
‘Oh no dear, it’ll probably take two or three weeks.’
OK, deep breath … think surely she must be wrong, what about the immediate processing thing? Wait a few days. Phone the GP again. Have a similar conversation, but this time with the receptionist.
Then penguin has a brainwave. I know, I’ll phone the hospital department. They must have the results (immediate processing … did I mention that?) …
Well I got through to the charming consultant’s secretary, who was very helpful and looked it up for me. ‘Oh, I’m sorry, we don’t seem to have anything at all for you yet…’
‘Well how long would you expect it to take?’
‘Well it can take up to three weeks or so, and then after that the Doctor has to receive the results and then dictate a letter to be typed, and then it has to go to the typing pool and that can take a while …’ But she really was a lovely lady, and on top of that I sneakily didn’t admit to her that I only had the tests done last Friday* even though the appointment with Dermatology was a few weeks ago … so she’s putting a chase on it for me and seeing what she can find out.
Flippers crossed for results soon. But really, the mind boggles – I presume it’s not the same system in Oncology, but I wouldn’t like to bet on it! It would be nice to think that if I don’t hear anything in the next day or two I could assume the results are negative … but I know the NHS better than that!
* Well she didn’t ask …