Pollyanna Penguin’s RA Blog

Sick as a parrot …

… or a dog, or any animal of your choice really … perhaps sick as an emu, or an ostrich? Definitely sick as a penguin!

I did a silly thing last Friday – I dropped my incy-wincy, teeny-weeny folic acid tablet and couldn’t fine. Feeling confident that the cat wouldn’t eat it (they taste foul), I din’t look for it… but I also didn’t take one as I’d run out! That meant I didn’t take one Sunday either as I didn’t pick up my scrip till Sunday afternoon and it was too close to taking methotrexate at that point, I thought.

And I am SUFFERING for it this week! I felt sick as an <insert animal here> on Tuesday and wasn’t quite sure why, but then did feel somewhat better just with the realisation is was the darned folic acid (or lack of it). Felt a bit better Wednesday, that being folic acid taking day, and felt better and better throughout the day and thought I was over it … right up until six o’clock this morning! No folic acid today (I take it Wednesday, Friday, Sunday) and although I’ve taken an anti-sickness tablet I still feel bloomin’ awful! I had breakfast this morning and I suspect I’ll be skipping lunch because the thought of food is making my stomach heave! Hubby might have to fetch his own dinner tonight too!

I HOPE it’s just the folic acid that’s doing it but it does seem likely since the whole point of it is to mitigate the sickness and I missed 2/3 of my dose last week! I hope you’re all having a better couple of weeks than I am!

On the bright side, last weeks flarette seems to be largely over so that’s a big positive. I am planning to go to Pilates this week, having missed last week, but I don’t know how much she’ll let me do! Will have to wait and see. I’m gradually trying to build up exercise again while continuing to give the arms a bit of a rest, because I’m sure lack of exercise isn’t helping the stomach issues either! It’s a cocktail of bits and pieces all coming together to make an icky-sicky penguin – definitely more of a Molotov than a Tequila Sunrise!

Round and round in self-diagnosing circles

Once upon a time (last Sunday as it happens) Polly was doing her weekly shop and BAM, something strange happened!

I was literally one minute thinking, ‘I need to buy a lettuce’ and the next, ‘Oh boy – I REALLY don’t feel well!’ In fact I felt so unwell I forgot to buy the darned lettuce, which proved most annoying at Monday lunchtime! I just felt suddenly tired and woozy and rather bunged up … oh and ACHY, as in joint achy. The suddenness with which it came on made me think, ‘Oh-oh, flu!!’ So I said to Hubby, ‘You’re driving home’ and then I kind of flopped and let him take over. When we got home I went straight to bed and took a decongestant tablet and, just in case, a migraine tablet. I also took my temperature – absolutely normal, which was however a fraction raised for me – i.e. it was 98.4 and my normal is about 97. Nothing to write home about though.

When I woke up I felt quite a lot better, although not good. Hmm, I thought – probably not flu then, just a cold. Monday I woke up feeling much better but still rather achy and VERY tired, but I hadn’t had a good night so put it down mostly to that.

Tuesday my left arm was REALLY playing up and, alarmingly I was having carpel tunnel symptoms in my left hand. This is extra alarming for me because I basically type for a living! I also had significant pain in my elbow in the same arm. I looked things up and found that there’s something called cubital carpel tunnel syndrome where swelling in the elbow (often caused by arthritis) traps a nerve and causes carpel tunnel in the hands.

So so far I’ve potentially self-diagnosed with flu, a migraine, a cold or cubital carpel tunnel syndrome. Anyone spotted what’s missing here? Well … I didn’t!

I gave myself a wee break from Wii’ing to rest the arm and felt quite a bit better Thursday but did notice that my OTHER elbow was also painful and that other joints were still quite achy, not really bad, just quite achy, and that I was sooooooo tired, in spite of having slept OK most nights this week … and FINALLY I put two and two together and realised I was/am having a ‘flarette’.

I’ve read about the symptoms of RA feeling like flu but it’s never happened to me before – so now that’s something else to add to the things I need to look out for, as I tend not to be brilliant at spotting these minor flares!

Of course I’m glad I get them so rarely now that I don’t immediately think ‘RA’ – that’s great – but I do feel a bit silly that I didn’t realise earlier!

And in other news…

I’m slowly, slowly losing weight, but as long as it’s going in the right direction that’s fine by me! I was worried that with winter around the corner, and now working from home too, I would be less inclined to go out for my lunchtime and pre-work walks … and indeed, that has been the case, especially on days like today when it’s pouring with rain … BUT, thanks to an offhand remark from Rick, as a comment on one of my other posts, I thought maybe I should try a Wii to do exercise indoors instead.

Well, I’m not sure if it’s working weight-wise but I’m really enjoying it, so thanks Rick and thanks too to my bro and sister-in-law for lending me their Wii! I was a table tennis pro yesterday (ranked over 1,000) for the first time … sadly today I came crashing down and am now ranked something like 611. At that point I gave up and went for ‘speed slicing sword play’ instead to vent my frustration! But frustration or not, it’s a lot of fun, it’s exercising bits of me that don’t get exercised when I go for a walk and I hope it’s doing some good weight-wise too.

At the moment my RA is very quiet, as I said in my last post, so that’s great, and my energy levels are reasonably up. In fact this weekend, rather than flooping about all over the sofa and watching too much telly, as I tend to do on less energy-fueled, more RA-related weekends, I made a bag, spent three hours clearing out the under-stairs cupboard on Saturday morning, went to dinner and an opera on Saturday evening, went for a drive (admittedly hubby driving) and coffee on Sunday morning and then went to a concert on Sunday afternoon – and didn’t even feel all that tired at the end of it.

Here’s the bag – I want to show it off and I won’t be able to do so in the flesh probably until next summer as, being cream background, it’s definitely more of a summer bag! I didn’t actually need a bag but I couldn’t resist this crazy beetle fabric!

I even beaded the beetle on the flap:

And kudos to my mum for politely admiring it instead of running away screaming ‘too many legs’! (She can just about cope with six-legged things but any more than that … not good!)

So, that’s my news – I suppose I should write about working from home at some point. The hows and whys and how it’s going – perhaps that’ll be my next post; although more likely I’ll just forget all about it. We’ll see … thanks for visiting!

Hospital appointment

Well, to use once again one of hubby’s favourite phrases, ‘That went better than I expected.’ Mind you, that might be because I’m doing well right now (or I was before I dug a 32-year-old sewing machine out of the cupboard just now) and consequently I didn’t want anything from the hospital except a quick in and out so I stay in the system for when I need help!

Anyway, I arrived in good time and only had to drive round the car park twice before I spotted someone heading out and was able to nab their space. The rheumatology clinic was heaving, partly because there were three consultants, four registrars and two nurses all seeing people separately, and partly because while everyone else was running dead on time, my consultant was running late.

Still, I got chatting to a lady sitting next to me in the waiting room and said to her what I’ve said before, ‘ If I need that sort of time one day, I’ll want him to spend it on me, so I can’t complain when someone else needs his time and he gives it to them.’ We had a bit of desultory chat but she soon lost interest in chatting to me when she released I wasn’t going to join her in moaning Minnie-ishness!

Anyway, I saw my actual consultant rather than a registrar for a change. He was in super cheerful mode – strange guy, blows hot and cold mood-wise and always seems to be in a better mode the later he’s running! Perhaps he’s just glad to see me because he knows I won’t take long?

‘Gosh, last time I saw you was in 2014’ he said. ‘If it’s another four or five years I’ll either be sacked or retired!’ I didn’t ask what he’d done or planned to do to be sacked but I’d love to know – I think working in the NHS gets to them all eventually!

We had a pleasant chat and he read through some of the notes including the fact I’d turned down a knee aspiration earlier in the year, which he commented on. I explained that I wasn’t keen due to past experiences but also that I was just coming out of a flare when I saw the nurse and that’s why the knee was swollen. A few weeks later when the aspiration appointment came around, it wasn’t swollen anymore! I did point out that she didn’t seem to believe I’d actually had a flare and he just looked at me and rolled his eyes expressively. Of course he could have been rolling his eyes at me, but it certainly felt, given the general tone of the appointment that he was rolling his eyes in sympathy with me and I suspect his opinion of their lovely nurse matches mine! Hopefully the next time I have a nurse appointment I’ll see the really lovely nurse. I hope she’s still there!

I’ve now found out why when I rang the helpline last time (earlier this year for a knee flare), the nurse seemed rather rude and abrupt whereas previously she’d been lovely – of course it was the new nurse, not the lovely longer-term one. Duh! They have rather similar names and I misheard on the phone.

Anyway … at one point my consultant commented, ‘Gosh, you’re rather bendy, aren’t you?’

‘Yes,’ I said, ‘It’s been commented on before … by you … probably in 2014!’ He laughed and asked if I could bend my thumb back onto my arm and when I said, ‘Nowhere near’ he lost interest… again.

Then he examined me knee! ‘Good heavens, that IS swoloen!’

‘No it’s not’ was my indignant reply, followed (after some squawking as he prodded it) by, ‘It always hurts if you prod it but this isn’t swollen for me. I’m walking 2-3 miles a day on it and it doesn’t hurt.’

He gave me one of those old-fashioned over the glasses looks and said, ‘Hop on the couch then.’ He then proceeded to do a more thorough examination and, after more Pollyanna squawking as he prodded and poked, he said, ‘OK, I might have been exaggerating!’

I did say that if I was finding it a real problem I WOULD get in contact and ask them to aspirate it … honest guv, and he finished off the appointment by saying, with a grin, that I must get in touch if I needed anything, anything at all … such as a knee aspiration…

I hope I don’t need to!

Wind out of my sails!

I have a hospital appointment on Monday – oh happy, happy, joy, joy … NOT! The last one did NOT go well. It was almost as though the hospital went back in time and thought ‘You know what we’re missing? That absolutely bitch of a nurse practitioner who retired a few years ago – let’s get another one of those,’ and they did. <Sigh> I see I never posted about that appointment. Basically, after the registrar telling me six months before that my ESR (erythrocyte sedimentation rate, a measure of inflammation) had been up for a while, much to my surprise, and increasing my methotrexate, the nurse then said ‘Oh, ESR isn’t a good measure anyway, and I don’t think you’ve been flaring at all’ and was really dismissive of everything….except that she did offer me a knee aspiration, which I ended up not needing as the inflammation went down by itself … after the flare that I apparently hadn’t had settled down. <Sigh>

I pointed out that my ESR rates had consistently been high when I was having a flare and low when I wasn’t, so even if my rates were a little higher than they should be all the time (potentially due to weight (too much of it) or hormones (all over the place)), they clearly did show when I was flaring and I felt that was important.

She said that CPR (C reactive protein) was a better measure and that when my ESR was up my CRP would be too, even if it was within normal levels. Now she’s not alone here – the general view is that CRP is a much better test, but I pointed out that since my CRP levels were never abnormal, surely the ESR was actually a better measure for me.

Now although I have blood tests monthly, the surgery doesn’t always get ESR tested because, as I said, it is generally considered to be less reliable than CRP, which is tested every month, but curiously, since that last appointment with the nurse the ESR has not been tested at all! Not once!

So … hospital appointment on Monday and I was spoiling for a fight, all ready to go in, all guns blazing, asking why these tests had been stopped and pointing out that they were the only ones that ever showed an issue. Having trained as a scientist though, I thought I’d better have all my data to hand as ammunition so this afternoon I sat down, got all the data off my surgery records and plotted it on a graph.

The results were … interesting, and the wind has been rather taken out of my sales. Here they are:

Graph showing flares against ESR and CRP

You’ll notice the ESR line is broken in several places – that’s because of the several months they didn’t test it. But here’s the thing … the flares (shown in red and of course my entirely subjective opinion of how bad they were) do indeed match fairly well with the elevated ESR … but I also noticed that my CRP, which I’d never properly looked at before because it’s always so low, does actually increase along with the flares, although it’s still well within normal limits (shown by the pale blue line at 10).

So, after an hour or so of data collection, graph plotting etc. I find I actually have nothing to fight about. She was right all along … .which is kind of annoying because, as you may have gathered, I really didn’t like her!

Of course the fight will come next time I have a flare, trying to convince either the GP or the hospital that a CRP of 2 or 3 … or if I’m ‘lucky’ 6 or 7, is actually enough to suggest something abnormal going on, even though ‘normal’ CRP can be up to 10! Ho hum …. that’s a battle for another day, and may that day be a loooooooooong time coming!

Research – RD Blog Week Day 4

This is today’s RD Blog Week topic:

Research – Do you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced in using research about Rheumatic Disease.

Nope, can’t say I do. When I was first diagnosed I researched everything I could get my hands on about RA, I had books, I read stuff online, I joined societies relating to RA, and what did I discover? Basically that if there is such a thing as a typical RA/RD patient … I’m not it!

I think if something changed in the way my disease affected me I would be researching frantically again trying to discover what was going on and why, but because I’m ‘lucky’ in that my RA is so mild, I work full time and have half a tonne of hobbies, of which RA is definitely not one, that I don’t have a lot of time to research something that isn’t really affecting me.

Last time I did any research was to prove a fully fledged practicing GP wrong when she told me that methotrexate was a steroid (it’s not), an anti-inflammatory (it’s not) and that the way it works in RA is completely understood (it’s not!) Fortunately she was not my GP – just someone I met socially!

What I do do, however, is participate in as much research as I can. I’m a member of all sorts of societies pertaining to pain, arthritis etc. and they periodically throw up research projects that are taking place, and whenever I’m eligible, I participate, and generally blog about it too, such as this one about a recent sleep study or this one about body image where i couldn’t post any results because the technology failed us and I never completed it! I’ve taken part in three or four studies in the last year or so, on top of the long-term ongoing epidemiology NOAR study that I’m part off, which I just had my ten-year anniversary visit with! I’m keen to participate in the hopes that the research will do some good somewhere along the line and help others, and also because knowing I’m not ‘typical’, I want that atypical type of disease presentation also represented in research so that people coming along and looking for things in future might find more that relates to them than I did, when doing their own research.

Keeping fit with RA

So Tuesday’s prompt for RA Blog Week 2018 was about how we stay fit with RA. Ha! I’ve never been fit in my life – however, I am, I believe, getting fitTER. The main RA-related thing I’ve been doing is one-to-one Pilates classes with a lady who specialises in helping patients with various joint problems back to fitness. I must have been doing that for a couple of years now and she’s marvelous! Her main tenets are if it hurts, DON’T DO IT, and while things aren’t hurting, build up the muscles around the joints so that when the next flair happens the muscles in the rest of the body can cope better with, for example, lugging my big bod around when the knee’s bad. I go once a week (approximately, if I’m not on holiday, she’s not on holiday etc.) to a fully equipped Pilates studio in Norwich and get myself hooked up to all sorts of weird and wonderful springs and rods and things, and strengthen away for an hour – and have FUN. We’re both gigglers and sometimes the other teachers/students must wonder what on earth is going on!

The other thing I’m doing is losing weight – not by any miracle drug or miracle regime. Simply by eating less and moving more. It seems to be working for me – SLOOOOOOOOOWLY but it’s working. I’ve lost 19lb since March in a fairly steady decline, although it has slowed after the first 5 or 6 lb just fell straight off!

Obviously the less extraneous weight you have pushing down on a flaring joint, the better you’re going to feel, so I’m slooooooooooooowly getting read of that extraneous weight. Sadly I have a long way to go – but happily it’s working.

Eating less involves not eating the things that I’m tempted by, such as chocolate, cakes, anything sweet, in the week, and limiting it to one or two at weekends. Of course I’d lose weight faster for a bit if  I cut all that bad and lovely stuff out completely … but then I’d just fall of the wagon big-time and put it all back on again. I’m seeing this 5 days of sensible eating and 2 days of SLIGHTLY less sensible eating as more of a lifestyle change than a diet, and therefore something I can and will keep up.

Moving more involves really trying to get out for a little walk first thing in the morning before work and another one at lunchtime. My RA is VERY mild and well controlled but I’m still not really in a position where I can more ‘serious’ exercise and you couldn’t get me into a gym for a million pounds! I really don’t know how that’s going to go once winter kicks in. It’s hard enough to do the first thing in the morning one now, with bright sunshine and 9 degree temperatures. What about when it rains and it’s minus 5? I don’t know! Also, as from October, I shall be working from home rather than from an office a couple of miles down the road, so will I be able to push myself out of my cozy house for a ‘nice’ walk in the snow and ice? I doubt it. I’m thinking exercise vids may be the way to go for at least some of the winter!

So wish me luck for the next few months and then hopefully I can get back to really regular walks in the spring!

So, RA Blog Week has rolled around again!

I seem to remember saying last year that I really must post more OUTSIDE things like RA Blog Week. I didn’t do very well! So thank goodness for things like this with daily prompts to suggest things to blog about. For Monday (oops, I forgot, I was just back off holiday, it was ‘the medicine’ – how are you treated by doctors and other healthcare professionals? Well, where do I start? By linking back to a whole host of blogs I’ve done about this I reckon.

So, you may have noticed if you’re a frequent reader, that I tend not to be a big fan of doctors and nurses, although I’ve had some good experiences. Here was one that wasn’t so good from quite some time ago. But then again, I have had some really positive experiences. One of the big issues though is, at both GP and consultant level, in the NHS you’re very lucky to ever see the same doctor twice, so I also posted about the frustrations of not having a relationship with your doctor. And then there are those times when you meet a doctor who hasn’t got a clue about RA and think of all the things you SHOULD have said to them … an hour after you leave.

So to bring us up to date, nothing much seems to be changing on the doctor and nurse front. At the moment I’m waiting for a chance to get a blood test re my methotrexate – it’s now two weeks overdue but as they have staff shortages you have to turn up at about 8:20 and wait an hour or so, if you’re even lucky enough to be near enough the front of the queue to get one that day.

That’s my current frustration. On the bright side, we’ve just had a fabulous holiday in Oxford, which I really must post about … but probably won’t! 🙂 I will say though, we walked LOADS and I felt so good for it! I’m trying to keep that up on my return but work is getting in the way.

When Polly met Carla (the sequel)

So, what was that rare treat you had Polly Penguin, I hear you all crying? Well, no, I don’t actually because the title kind of gives it away … YES! For the second time ever, two years after the original When Polly Met Carla, Carla and I managed to meet up, during a brief drop in to the UK for Carla and Hubby. I’m very flattered that they arrived in Heathrow one day and then had six hours of train rides the next day to come and see me! It was so good to meet up with Carla (and hubby) again and catch up on all the news … and luckily the pub/bar/restaurant we’d picked had sticky toffee pudding to die for. (Carla would have been very disappointed if that hadn’t been the case … apparently you don’t get right over in the US! <grin>)

Among other things I got to here more about all these great patient advocacy meet-ups you guys have over there  … and that brings me to a BIG THANK YOU, to Carla for organising it, Wren for the amazing drawing (as ever) and all you folk that kindly signed it at one of the meetings and sent lovely messages! What is it? I (once again don’t really) hear you cry. It’s this fantastic Wren original card:

Isn’t that great? Wren said she started the card when it was raining buckets on this side of the pond and she thought she’d provide some inner sunshine with a nice summery, flowery picture – but when it arrived we were in full heatwave mode. Still, a nice, summery card was entirely appropriate for a heatwave and definitely is doing its inner-sunshine providing job now, when it’s been raining consistently for a couple of days!

So thank you again all who signed it, thank you so much Wren for the lovely card and Carla for organising it and of course hand-delivering it! 🙂

Maybe one day I’ll get to meet some more of you in person – that would be great!