Advice

October 4, 2019 at 12:19 pm | Posted in rheumatoid arthritis (RA) | Leave a comment

For the 5th day of the 5th RD Blog Week the prompt is Advice – What advice would you give to your newly diagnosed self after what you’ve learned living with RD?

Well, I’m taking the lazy option and I’m going to link to a post from the blog week two years ago where advice was a wildcard and I used it. I could have just posted my link directly to that post, which is here, but since it’s all labelled up with ‘Day 3 of 2nd annual blog week’ or words to that effect, I thought I’d better pop in this explanatory post so that it’s clear it’s for the FIFTH blog week too! I think and hope the advice is still useful!

Community

October 4, 2019 at 12:12 pm | Posted in rheumatoid arthritis (RA) | 2 Comments

One of the prompts for RD Blog Week 2019 is as follows: Community – Our community is often hard on each other, even going as far as accusing others of not having RA when they can physically do more than others. How can we educate our own community on RA and how it affects each one of us differently.

I have to say this one didn’t really speak to me at all. So why am I posting about it? Well mostly to say I haven’t found this to be the situation at all. This maybe because I’m really only part of an online community. I did attend a couple of meetings with the local(ish) RA group, but because my RA (aka RD) is so mild, I didn’t really find I was gaining anything from them or contributing anything to them.  Nevertheless, I never had anyone tell me that I shouldn’t be there, that my RA wasn’t good enough (or bad enough) to join in! It was a friendly and supportive group … but perhaps not as friendly and supportive as this wonderful online community we have. Again, no one has ever suggested online that because I’m fit most of the time I don’t have RA, or that I shouldn’t post about it because mine isn’t typical of other people’s.

In fact, in spite of all the stuff you hear about ‘trolling’ etc. I have found all the online communities I belong to or have belonged to over the years (painting, crochet, Spanish learning, polymer clay – yep, there’s an online community for just about everything out there) have been super-supportive and friendly.

So this is a chance to say thank you to all you wonderful bloggers out there, and all you wonderful folk who don’t blog but are kind enough to read my spouting and occasionally comment! And of course to the fabulous Rick, of RA Diabetes, who’s organised this blogging event for the last five years!

Disability?

October 4, 2019 at 11:48 am | Posted in rheumatoid arthritis (RA) | 2 Comments

It’s the 2019 RD Blog week! Good heavens, where has the year gone since the last one? RD is rheumatoid disease by the way – as opposed to rheumatoid arthritis, which is considered a somewhat limiting name, which people can find hard to distinguish from osteo.

Anyway, the prompt for Wednesday was disability – how do you deal with limitations that are there some days and not others? This is something I feel quite strongly about. Most of the time I’m fine – I’m very lucky in that respect. That’s why my poor blog lies abandoned most of the time, because I have nothing to say about the RA that isn’t making itself particularly present in my life. However, there are times, during flares, when I feel very much disabled, but there is little or no recognition. I can’t, of course, get a ‘disabled badge’ for the car, because I’d only need to use it maybe twice a year, but on those two times a year it’s incredibly inconvenient. For instance, when I had a flare a little while ago I could have actually driven myself to the hospital, since I drive an automatic and I don’t use the left leg in driving, and it was the left knee that was flaring; but I knew that when I got there I wouldn’t be able to park anywhere near, so a dear and wonderful friend had to drive me in, pull up at the entrance, let me out, circle around the car park for 20 minutes and find a space; and repeat the process when we left.

I’m not actually suggestion I  should have a badge, but I do certainly believe there should be more flexibility in them for folks who are less lucky and maybe have a flare a month or something, or longer flares, and still can’t get a badge.

 

Aspiration and injection into the knee

May 30, 2019 at 3:40 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , , , , , , ,

Well … after ten years of saying ‘I will NEVER have another aspiration and injection into the knee, not for a million pounds …’ I’ve just had one! Kudos to the hospital – the day unit were fantastic – so different to the staff in the other part where you go for the six-monthly checks.

A friend drove me in and, as parking is a total nightmare there, dropped me off at the front door. I hobbled in and collapsed on a chair. After a couple of minutes the receptionist looked up and asked if I had an appointment and I said yes, but not for half an hour (we were a bit early!) and I just wanted to sit. After a minute or two I explained who I was and she said, ‘Oh, the day unit – they’re probably ready for you now – I’ll just check’, and they were. Even though I was early three staff fussed around to help me into a comfy chair, get me a glass of water and get the chair raised so I could have my leg up. Shortly before my actual appointment time they came over and said there was a bed ready just across the room. I was able to get over there but needed help getting my shoes off etc., and they were very obliging. I did have a short wait then for the doc but not too bad, and my friend had found me by then so I had company.

The doc was delightful – really sympathetic and listened carefully to the history. All my worries and midnight conversations in my head where I got frustrated with them for not listening or taking any notice of what I said were quite unnecessary. Don’t borrow trouble, Polly Penguin!

I can’t pretend the procedure wasn’t painful – but compared to the pain I’d been in earlier in the week it was nothing; and compared to when I had it done ten years ago it was nothing. I think the fact that this time it was in the hospital with an expert rheumatologist who probably injects a few knees a day, rather than in the GP surgery where she probably injects a couple of knees a year, made quite a difference!

From the doc first turning up to the whole procedure being finished and me being ready to go home was only just over half an hour.

And the important thing – did it work? Well, he warned me it might not … BUT IT DID! Yay! I’m not a hundred percent better of course – I’ve had a week of total rest for the leg for a start so if I’m up and walking for five minutes the muscles are getting twitchy – it’s a fine balance between making sure I do enough to ‘rehabilitate’ the leg and making sure I don’t do too much!

I’m still getting some mild pains now and again and, today being my first day back at work, I’m still having to rest my leg up in a slightly ridiculous way on top of my PC, but it’s a massive improvement and I’m just hoping now that the improvements will continue!

Another flare – same ol’ numpty!

May 23, 2019 at 1:52 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
Tags: , , , , , ,

So ..I’m flaring again, since Monday, and it’s the worst one I’ve had so far, although completely focused on the left knee, so I’m expecting them to brush it off as osteo. Maybe it is partly  it’s swollen, warm to the to H and bends to about 120 degrees at best (worse in the morning) and doesn’t straighten either. It’s agony to walk on – when I do, with a stick, the pain makes me want to throw up. I know lots of you will be …yeah, and? But this level of pain, and the ‘low grade fever’ are new to me. They have rendered me useless!

Im managing on paracetamol, resting, icing, rubbing in anti inflammatory gel and an incredible hubby – who even went down twice in the night for me, to change my ice pack.

So now to the numpty part – last flare it took Leigh (Phat50chick) to remind me about icing. This time I forgot the Voltarol gel.

On Tuesday I phoned the hospital and they booked me in for a knee assessment the following Tuesday – she originally said TWO WEEKS! I can’t imagine putting up with this for two weeks. Normally I get a dose of steroid tablets and it’s over in a few days, but because I’ve just had those for the previous flare, it isn’t an option.

So …I’m booked in for next week but I had an utterly miserable 48 hours and rang the surgery this morning, to say ok, hospital coming up but what the heck do I do in the meantime? We ran through what I was doing, the fact that no, I couldn’t come into the surgery because even if someone could bring me I couldn’t get into the car or sit and wait (so won’t Tuesday be fun, children?!) and then we talked options and I said I can’t take anti inflammatory  drugs as all I’ve tried upset my tum and she said what about gel?.

DOH! And it’s helping a lot! Still swollen, still warm, but definitely less painful!

So this time I’m setting out below what I need to do in a bad knee flare ….so next time I won’t forget stuff! Other suggestions also welcome …but I don’t tend to find heat helpful.

 

Things I’ve been doing:
Taking paracetamol – 2 every 6 hours including at night

Ice packs

Tried ibruprofen tablets but upset stomach

Rubbing in 2.32% diclofenac gel since today – after talk to GP

Resting leg horizontally as much as possible

Small bending exercises – not sure if wise or not but I’m hoping it reduces stiffness

 

Flare update

May 1, 2019 at 11:41 am | Posted in rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , ,

Today was my last day on the prednisolone and my knee is not 100% better, although it is hugely improved, so I thought I’d take a look through my blog and see how other flares went and how it compares. I had a look at my post-flare milestones post from last year and realised that this flare definitely wasn’t as bad. For this flare I have basically worked through it, whereas the last one I only did one full day’s work while taking the steroids; in the last flare I also took Ibuprofen most days, whereas for this one I’ve only taken paracetamol (Tylenol) which i take all the time anyway. (By all the time, I mean as often as the prescribed dosage allows.) BUT, unlike last year, the flare is NOT completely better on the last day of taking steroids. I don’t think this is because it’s been a bad flare; in fact I think it’s because it hasn’t been a bad flare. That’s caused me to overdo it! Only yesterday did I start using my stick – I’d been managing OK without it, which seemed good … but I think it’s ended up putting too much strain on the knee, even though I’ve done no real exercise or significant walking.

I have come up with a fairly nifty work solution though and I do wish I’d thought of it last week instead of today! I tried having my leg raised and resting on top of my computer tower, which is on the floor … but that meant I couldn’t actually reach my keyboard properly so it wasn’t ideal. So I’ve now got my drawing board from downstairs and put it on the desktop, which allows me to extend the desk surface about 15 cm towards me. I have the keyboard and wrist rest balanced on the edge of the drawing board, and of course the transcription foot pedal pulled out a bit as well, and now I can reach everything comfortable and my bad leg, while not being 100% comfortable, is a lot more comfortable than it was before.

Now I just need to remember this for next time – or at least remember to look at my blog next time and see what I did!

Flare! Out of a clear blue sky …

April 25, 2019 at 1:12 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , , , , , , , ,

I’ve been doing well for ages – hence the quietness on the blog – nothing much to say – and suddenly BAM, out of the blue, I woke up yesterday morning with my usual left knee flare. Actually weather-wise it wasn’t such a clear blue sky – we’d had a few beautiful days and yesterday was a bit dull, but nothing dramatic.

I had been having more than the usual twinges in my hands and feet the last couple of weeks, but although it was a bit above the norm it was still only twinges and nothing to write home about. Then yesterday, pooof – VERY painful knee.

I had a very bad night’s sleep last night, partly because my sleep is definitely not normal in that I move a lot while asleep – and every time I moved I woke up going ‘OUCH!’ … or words that that effect, and partly because I was thinking oh, no, there’s nothing else for it, I will have to call the doctor in the morning.

Those of you who’ve read this blog a bit before will be aware that, while appreciate that it’s ‘free’, I’m not a big fan of the way the NHS is run, and our local surgery in particular, and I was literally dreading it. So how did it go? Well, I’m glad you asked. Are you sitting comfortably? Then I’ll begin.

I phoned at 8:30 when the phone lines open and got a message saying ‘You are fourth in the call queue – please hold …’ etc. I was expecting more like ‘You are number 47 in the call queue’ so that was the first of several pleasant surprises!

Then when I got through a receptionist answered I was ready to do battle to actually speak to a doctor – not for instance ‘It’s arthritis? I’ll get you a physio appointment’ etc. Yes, the receptionists triage. It’s quite mad, but there we are. Anyway, I said without thinking that I was having an RA flare and got ‘A what, sorry?’ But that was fair enough. When I said ‘A rheumatoid arthritis flare’ that was obviously something on her crib sheet. ‘I’ll see if anything’s available this morning.’ Bloody well better be, I thought, but held my peace!

‘Oh, I’ll have to get a doctor to ring you’ she said in some surprise. No doubt she heard ‘arthritis’ and initially went down the physio route I’ve bumped into before, but this time they’ve sorted themselves out and can spot the difference between osteo and rheumatoid arthritis. (Not that I’m suggesting a doctor shouldn’t see you for osteo, but they certainly SHOULD for rheumatoid!)

So I waited for the doc to call me back – and he did, within half an hour, and one of the senior partners who I rather like at that. I explained the issue and he said, ‘You’d better come in and we’ll see what we can do. Can you get in for 9:30?’ I said I could and he said ‘I’ll book you in with Dr Smith.*’ I nearly groaned aloud. ‘Is this the same Dr Smith who was a locum a few years ago? I know it’s a common name, but if it’s the same one … I won’t see him!’ (That was some twit who was exceedingly pompous, upset all the patients and nursing staff, ran hours late and told me I’d sprained something when I obviously hadn’t!) He sounded a bit puzzled and said ‘I doubt it – he’s a partner, and he’s very good. He’s not been with us that long.’ I said in that case that was fine then, and toddled in for 9:30.

The checking in system said there were three people in front of me and a 28 minute wait – my heart sank ’cause that reminded me of Dr Smith the first, and I thought oh no, perhaps it is him! It wasn’t …. and in fact the wait was only about 20 minutes which is fine. I always say I don’t mind waiting if it means the doctor is providing enough time for each patient and someone else needs that time … if it we me, I’d want a decent amount of time, thank you!

When I went in I felt instantly (mentally) better – it was VERY OBVIOUSLY a different guy. I won’t go into physical  characteristics but let’s just say Tweedledum versus a stick insect, and quite an age difference too – clearly a different guy. He was very pleasant indeed; he listened to what I had to stay, accepted that I knew my own condition pretty well, examined my knee carefully and asked sensible questions. Good heavens, I thought, have I slipped into a parallel universe?

Then he spoiled it all by saying, ‘I think we’ll try you on some stronger pain killers first.’ My heart sank – nooooooooooo, I remember last time that happened – I had opiods just when the big ‘No opiods’ thing was going on in the States – and they didn’t even TOUCH the pain! But I plucked up the courage (OK, there wasn’t much courage necessary as he was such a nice man), to say ‘I was really hoping for steroids because so far they have ALWAYS worked!’

He smiled and said ‘OK, if that’s what you want to try that’s fine. Come back in five days or so if it hasn’t worked and we’ll investigate further.’ Back into parallel universe territory again. And best of all <insert happy dance emoji here, although only a mental happy dance as my knee isn’t up to a physical one> he PRINTED OFF THE PRESCRIPTION.

‘Eh,’ I hear you cry. ‘So what? What’s that got to do with the price of fish, penguin?’ Well … they had what they (the doctors) thought was an all singing, all dancing IT system at one point. The patients, nurses, receptionists (poor things), pharmacy and nursing staff all saw it for what it was but the doctors took a while … they used to press a magic button on their computers and say, ‘There – it’s automatically gone over to the pharmacy. You can pick it up straight away!’ Only you never could! My longest wait was five hours from time of appointment to getting my steroids, and that was only because I effectively staged a sit-in at the surgery until someone printed off a scrip for me, just before they were due to close!

So anyway, I took my beautiful, green, shiny (OK, not actually shiny) printed slip over to the chemist and waited about five minutes, if that, and came home with my beautiful, white, fairly shiny steroids, of which I have taken the first dose.

I already feel better … but whether that’s the lifting of the stress of thinking ‘I have to phone the surgery’ or the steroids or the fact I had an hour resting with my leg up earlier, I’m not sure!

Here’s hoping it’s all better soon – and I hope, you, dear reader, are keeping well and flare free!

 

* Not his real name – did you guess? It was however a very common name.

Pride goes before a fall … ouch!

February 22, 2019 at 11:56 am | Posted in arthrits, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
Tags: , , , , , , , , ,

I was just doing some snowdrop lifting (sounds a bit like sheep rustling but it isn’t!) in preparation for an art class tomorrow and I managed some penguin landing instead – crash landing!

Luckily I’m mostly fine – slight twinges in all the diodes down my right side, to misquote Douglas Adams, but certainly nothing broken or torn or, I think, even sprained. I have a horrible feeling I’m going to be stiff as a board tomorrow though- in muscles as well as joints, so an hour’s drive to the art class isn’t ideal … but I do at least have the snowdrops ready to paint when I get there!

It did make me think though … about pride coming before a fall! I should have swallowed my pride and asked hubby (who hates gardening with a passion) to do the digging for me, or at very least have waited until he was in the house before doing it. There I was, outside on a freezing cold morning (the sun had come out and fooled me into thinking it was going to be warmer), and I missed landing on the prongs of the fork (upturned in exactly the way they should NEVER be … but they were) by mere inches! Things could have been a whole lot nastier than they are.

A dear, elderly friend died this week and I’ve been blathering on about how her husband (and possibly also my mother) really ought to have panic buttons that link through to emergency services or something similar, for occasions just such as this, since they’re on their own, and then I go and have a tumble when I’m on my own – and I could have just waited until hubby was home. Silly Penguin!

So while I’m on a misquote roll, (pride comes before a fall is probably a misquote of the biblical ‘Pride goeth before destruction, and a haughty spirit before a fall’), I should also practice what I preach (misquote of ‘… do not do what they do, for they do not practice what they preach,’ from the Gospel of Matthew apparently …

Perhaps I should have made that a new year’s resolution, since I find myself also thinking a lot about (if not generally preaching about) cutting down on plastic use, but fairly dismally failing to do so as yet. ‘Must try harder!’ to accurately quote most of my school reports!

Sick as a parrot …

January 24, 2019 at 1:47 pm | Posted in rheumatoid arthritis (RA) | 6 Comments

… 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 find it. Feeling confident that the cat wouldn’t eat it (they taste foul), I didn’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!

Blood test sorted – for this month at least!

January 23, 2019 at 12:28 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
Tags: , , , , , , , ,

Incredible – the surgery being polite and helpful! What’s going on?!

I just phoned the surgery to book my annual arthritis review with the nurse, and she asked if I’d had the fasting blood test yet, as should have in advance. I explained that I’d tried but unfortunately I’d been in twice and they’d run out of slots (you have to turn up on the morning, you can’t normally book an appointment.) She explained that half the staff are off sick at the moment and they’re really struggling – I really appreciated the frankness and honestly, and let’s face it, with a combination of the stress they’re under a waiting room full of germy patients every day, it’s hardly surprising!

She said that the best thing to do was come really early and wait outside – which is interesting because that’s something they were VERY strongly discouraging a few years ago and I know the phlebotomist I saw last time was moaning that if people would only spread themselves out a bit  and not all come first thing, they wouldn’t have the problem – obviously no one’s talking to each other again!

Anyway, I pointed out that thanks to my arthritis I couldn’t come and stand outside for 20 minutes in the freezing cold just to try and get a ticket – there’s no seating out there at all and no shelter from the rain.

She then said that if I didn’t mind a really early appointment the nurses were running an early clinic in February to try to catch up. Well – that solves all my problems – no queuing outside, no waiting for an hour to be seen because I’ve got the first appointment, no having to take time out of work time because it’s well before work starts, and no sitting starving because I’ve missed breakfast – because I’ll have had the test before my normal breakfast time.

The only issue for me is going to be remembering about it! Thank goodness for technology. I’ve put a note on my online calendar reminding myself the day before to set up an alarm on my phone and iPad to wake me up half an hour earlier than normal as the appointment is actually at normal ‘getting up time’.

Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.