World Autoimmune Arthritis Day

April 21, 2014 at 8:16 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , ,

waad

World Autoimmune Arthritis Day, a 47 hour ONLINE Virtual Convention that starts at 6am ET/USA (11am UK) May 19th and ends at 5am ET/USA (10am UK) May 21st.

Anyone interested in finding out more about autoimmune arthritises can join in, but you MUST register. If you want to attend the live events it’s $5 before May 19th or $7 ‘on the door’ (it’s all virtual of course!).HOWEVER you can also register for free if you just want access to the library of info and all the free resources, which will be downloadable until May 31st.

For info on all the great live events taking place, go to the registration page here.

A day (or two) in my life with RA

March 23, 2014 at 9:58 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 19 Comments
Tags: , , , , , , , , , , , , , , , , , , , , , , ,

This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-”control” where I am now!

4:00 am A day in March 2008

Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.

Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February  - so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?

And where the heck is that physio appointment they promised me months ago?

4:00 am A day in March 2014

Zzzzzzzzzzzzzzz…..

7:00 am March 2008

Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.

7:00 am March 2014

Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.

7:30 am March 2008

Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!

7:30 am March 2014

Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!

8:00 am March 2008

The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!

8:00 am March 2014

Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.

9:00 am March 2008

Work  - chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.

9:00 am March 2014

Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.

12:00 pm March 2008

Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!

Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.

12:00 pm March 2014

Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.

Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!

3:00 pm March 2008

Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.

3:00 pm March 2014

Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!

5:00 pm March 2008

‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!

5:00 pm March 2014

I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!

6:00 pm March 2008

Still at work.

6:00 pm March 2014

Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.

7:30 pm March 2008

Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).

7:30 pm March 2014

We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.

Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go  because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.

9:00 pm March 2008

Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.

9:00 pm March 2014

In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.

10:00 pm March 2008

Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!

10:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…..

11:00 pm March 2008

Better put the light out. Toss, turn, toss, turn.

11:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…

1:00 am March 2008

At last  … zzzzzzzzzzzz…..

1:00 am March 2014

Zzzzzzzzzzzz…

2:00 am March 2014

Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.

2:00 am March 2014

Wake up – roll over – zzzzzzzzzzz…………….

And so another day starts in the life of Pollyanna Penguin …

My Day with RA

March 10, 2014 at 8:27 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , , , ,

This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.

As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.

Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!

Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)

The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.

The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated!  :-)

 

 

 

Paracetamol (Tylenol) has a cumulative effect – heck, why didn’t I know that?

March 6, 2014 at 1:28 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , , , ,

I woke up this morning and said to hubby, ‘Yay! Good news! I didn’t need to take any paracetamol last night and I don’t need them this morning either! Isn’t that great.’ He agreed it was great. (He’s nice like that.) 11 am today and I was STILL feeling fine – hurrah, I thought, this dratted flare is finally over. Then, out of the blue, bam, agonising stabbing pains in my ankle. Then the light dawned – oh dear – I bet paracetamol has a cumulative effect.

I’m a bit of an idiot really. I KNEW it had a cumulative effect from the point of view of overdosing, and if has that then it’s likely to have a cumulative effect for pain too I suppose! Feeling a bit silly now!

Anyway, there’s a fascinating article here by Dr Chris More, a fibromyalgia sufferer her/himself (doesn’t specify gender on site, so far as I can see!) Actually, I’ve had a wee browse around the site and I think it’s a great resource for anyone with pain issues, not just fibromyalgia sufferers, so I will be adding it to my blogroll too!

Come and join me in a Facebook chat

January 25, 2014 at 12:12 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , ,

‘What?’ cries anyone that knows me. ‘You? Chatting on Facebook? Didn’t even know you knew HOW to chat on Facebook.’ Well … just about… with a bit of help. This is for IFAA – International Foundation for Autoimmune Arthritis. I’m one of their ‘blog leaders’ helping to spread the word about their work … although I’m not very good at remembering to post etc. so I thought I should make the effort to get over Facebook-phobia! Here are the details about the chat but NOTE IT IS 8:30pm UK time!

Here’s the link: https://www.facebook.com/IFAutoimmuneArthritis Hoping to ‘meet’ you there.

 

Polly Blog Leader Feature Template

Hairspray?!

January 20, 2014 at 11:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
Tags: , , , , , , , , , , , ,

Something odd’s been happening lately. Several times I have suddenly smelt (and even tasted) hairspray – and once or twice it’s been a taste sitting at the back of my mouth/throat for hours and hours. The first time it happened I assume my colleagues (aka the junior penguins) had been drastically overusing the stuff,  although neither of them looked lacquered (!) but the following day I woke up with the same thing, so I figured I couldn’t blame them after all.

Then it went and I thought no more about it for a few days … and then it came back! At its worst it’s really very unpleasant indeed – it makes everything taste slightly odd, even put me off my coffee for a short time, which is unheard of!

And then it went again.

I can only think of two serious possibilities for what might cause this, given that I don’t own any hairspray and it’s definitely not the JPs’ fault! One is a bit gross, so GROSSNESS alert, skip the next paragraph if you don’t want to be ‘grossed out’.

OK, here goes – I’m just getting over a nasty bout of sinusitis – and part of that is (or can be) having blood and puss form in the sinuses which then has to … erm … find a way out! The way out is either via the nose or down the back of the throat … and in my case (gross bit) it was doing both! Now blood has a sort of metallic taste that could, I feel, be confused (especially in my naturally confused state!) with the metallic smell/taste of hairspray. Of course you may have never tasted hairspray – lucky you! I’ve managed to ingest a bit now and then over the years when using it!

OK, that’s the gross bit out of the way. The other, very faint I think, possibility is the methotrexate. The posh name for an unexplained metallic, foul or unpleasant taste in the mouth is Dysgeusia and it has been reported, very rarely, as a side-effect of the methotrexate. However, the little I can find about it SEEMED to suggest that it doesn’t go away, and the only thing that makes it go is stopping the cause – i.e. stop taking the MTX. Well, it’s not THAT bad! I think the MTX has done me a LOT of good, so a bit of a bad taste in the mouth I can live with. Then again … it may be nothing to do with it anyway.

Needless to say, I won’t be popular with our stressed NHS doctors if I make an appointment and say ‘I’ve got this funny taste in my mouth…’ so I haven’t bothered. What I will do is see how thing are tomorrow morning, given that I take my methotrexate tonight. I THINK it’s been worst on Tuesdays the last couple of weeks, but am I just imaging that? I’ll find out tomorrow!

Healclick.com – a new way of looking at your health

January 14, 2014 at 5:41 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
Tags: , , , ,

There’s a new website launching at 8 am Pacific Time (whatever that is!) and it sounds like (and in fact looks like, as I’ve been playing in the beta sandbox) an interesting idea.

It’s completely free to join and there will be no ads. (How’s it funded? Read on!) It’s designed by patients for patients and the idea it’s kind of social media for patients with a twist. You fill in all your details including your health issues, medications etc. and you can discuss topics, write about anything you want that’s treatment/patient etc. related and read what other people are saying. The twist is that you can look at other registered people (you can find me on there as Pollyanna Penguin) and the site will give you a percentage match to other people on the site, based on your conditions, treatments etc.

So OK, how’s it funded? Well anonymised and grouped data will be sold to research organisations – both pharma and universities. There’s some info on how it will be anonymised  http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html This may or may not be something you feel comfortable with – it sounds fine to me (but then I’m using Pollyanna Penguin on there!) but I’m sure some people wouldn’t be happy with it; well that’s entirely your decision – no pressure! :-)

If you want to give it a go though, here’s where to find it: www.HealClick.com, or if you’d like a little more info, have a look here: www.indiegogo.com/projects/revolutionizing-patient-sharing or here:

 http://blog.healclick.com/uncategorized/we-got-answers

or Wren over at rheumablog also has a post about it – she’s joined too.

I’ve already had someone link to me – presumably we’re a match – or perhaps it’s someone that reads the blog, or maybe both. Frustratingly I can’t find out right now as I’ve stupidly lost my password! Because it’s still in beta, someone’s got to sort this out for me manually, but I’m sure once it’s live it’ll be as easy as any other site when you lose your password (which I blush to admit I do all the time!) Anyway, I’m excited to find out and I’ll be watching the site with interest to see how it develops. See you there?

Advertising doctors

December 2, 2013 at 2:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 2 Comments

Being in the UK, where doctors are forbidden from advertising, and coming from a family full of doctors, the whole concept of doctors advertising makes me feel slightly queasy, although I appreciate that in other cultures (notably the US of course) it’s absolutely the norm; but when I get advertising pretending to be a comment on my blog it doesn’t just make me queasy, it makes me cross.

We’ve had this before of course – from ‘the mattress people’ among others – but when it’s a doctor it makes me really angry – especially when I’m sitting here in pain and dribbling my coffee after just having had a tooth filled … thus not being in the best of moods anyway. (The pain is RA – the tooth doesn’t hurt at the moment, being numb!)

Here is the comment from the doctor (or at least the doctor’s marketing people) that has got me so riled – but sorry guys – your link and name won’t appear!

Continued pain issue, clueless Rheumatologist, non-stop painkiller, side effects, seems like story of everybody with Rheumatoid Arthritis. Whether you are already diagnosed or feeling pain, choosing a right Rheumatologist can make or break you. Like, my had a issue in her knee and it was treated. Though it pains her sometime but her Rheumatologist at xxxxxxx, make it sure it happens seldom and we trust them. So, it’s better to ask your Rheumatologist even in slightest pain before it magnifies.

They can’t even think of an appropriate person who is supposed to have RA – note the ‘my had a issue in her knee’.  My what – and don’t you mean ‘an issue’? And it should be ‘simetimes’ and that ‘Like’ is poor usage and so is the ‘but’ and why should my Rheumatologist be in the slightest pain? (I’m a bit of a grammar freak, especially when in a bad mood!)

And don’t you just love the ‘and we trust them’ when this is actually FROM them?! Perhaps what it should have read was ‘my patient had an issue in her knee’.

At least  I suppose I should give them points for having actually read the article and commented appropriately … but nobody gets points in my book for ‘black hat marketing’.

Grrrrrrrrrrrrrrrrrrrrr… right, back to work … and dribbling.

The joys of the walk-in blood test clinic

November 22, 2013 at 6:00 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , , , , , , ,

Last time I had my monthly (now three-monthly) rheumy nurse appointment at the surgery, they happened to be running the first walk-in blood test clinic. These will run every Thursday – no appointment necessary, just turn up any time on Thursday, take a ticket, sit down, wait to be called and have your blood taken. No actual nurse appointment – in and out, ram in the needle, suck the blood, off you go. Well … that’s the theory.

My rheumy nurse had blithely assured me that they had run trials on this and each person could be seen and sent on their merry way in 1.5 minutes. I’m sure you won’t be surprised to hear that this wasn’t quite the way things were going on the day I happened to be there. As I say, I wasn’t there for one of these walk-in tests – I just had the dubious pleasure of observing while waiting for my appointment. I am supposed to go along in a couple of weeks time for one.

Well I arrived around 8:30 for my appointment and saw a big board on the wall with raffle-ticket type numbers on it. They had obviously run from 1 to 50 but 40 of the tickets were already gone and the waiting room was alarmingly full. As I sat down a weary looking phlebotomist poked her head round the door and yelled ‘Seven … seven? Is number seven here?’ Number seven was not there – I think number seven had got fed up with waiting and gone home!

‘Eight … number eight?’ A grumpy woman got up and pointed out she’d been there since 7:30 that morning and had now waited an hour for one of these quick appointments.

When I went in for my appointment (dead on time, bless her!) my dear nurse looked a tad frazzled. ‘What IS going on out there?’ I asked, and she explained that this was the first run of this new system, they were two nurses down  and the practice manager was on holiday! She was trying to fit in the odd ‘walk in’ patient on top of her full rheumy list, to help out.

Well – that couldn’t be helped, could it? I mean if people call in sick, you’re stuck, aren’t you? No one to blame. And of course the NHS can’t afford to employ locum/bank nurses to fill in – just one of those things, I thought.

Then I thought again. I know this place, I thought … ‘Erm … dear rheumy nurse,’ says I, ‘how long have these ladies been off sick?’

‘Oh, don’t!’ says the dear nurse, ‘Joan’s been off so long I can’t even remember and Julie’s recovering from an operation so she’ll be off a while.’

Right … so whose bright idea was it to start off this system KNOWING they were two staff down and couldn’t possibly cope? I don’t know but I can guess … someone who was on holiday, perhaps?

By the way, when I came out from my 15 minute appointment there was a nurse shouting ‘Ten … number 10 …’

So ‘we can turn these people round in 1.5 minutes’ had apparently turned into ‘We can turn these people around in … um … probably about 15 minutes’ given that there were two nurses doing this walk-in full-time and others stepping in when they could.

Number 43 was off the board by then – I wonder how long until they ran out of tickets – I overheard a receptionist saying, ‘Oh, I think they’ve all gone – you’ll have to come back next week’ to someone, before realising there were some tickets left, so presumably there are only 50 slots and ‘Turn up any time on Thursday will actually mean ‘Turn up before 9 on Thursday or you’ll be out of luck.’

Of course the new Clinical Commissioning system that is now in place but not in place and has no one actually running it is no doubt partly to blame … but that’s a whole nuther story …

Three-monthly blood tests

November 19, 2013 at 9:56 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 7 Comments
Tags: , , , , , , , , , , , ,

The hospital has decreed that patients on methotrexate for RA no longer need monthly blood tests – they will now be three-monthly instead. Now I don’t have a problem with having my blood tests every three months – as yet I’ve never had a single blip in my tests and if the hospital say three-monthly is safe I suppose I have to believe them and not just assume this is purely a cynical money-saving exercise: ‘Hey, what’s the odd life lost compared to a few thousand pounds saved, eh? Let’s do it! Right lads, down the pub …’

What I do have a problem with is the fact that they can’t book tests three months in advance, and yet we’ve been told to contact the rheumy nurse to make the next appointment. There IS NO WAY to contact her except by making an appointment to see her … a bit of a circular argument! My sensible and lovely nurse realised this straight away and in fact pointed it out to me with a comment on the lines of ‘I’ve told them ALL individually in reception, so don’t take any nonsense if they tell you that you should have booked it through me!’

OK, so that’s hopefully sorted out even before it becomes a problem, but how crazy that we can’t just book the tests when we see the nurse!

The surgery have also arranged monthly ‘walk-in clinic’ tests for the months we don’t see the rheumy nurse … but that’s a whole nuther story … a post to come in a day or so.

Next Page »

Create a free website or blog at WordPress.com. | The Pool Theme.
Entries and comments feeds.

Follow

Get every new post delivered to your Inbox.

Join 82 other followers