Gluten Free UPdate

April 21, 2016 at 2:33 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , , , ,

So I did gluten free for a month before we went on holiday to Barcelona – where we had a FABULOUS TIME and ate all sorts of wheat-related products! I can safely say, I think, that it made absolutely no difference to my arthritis, which carried on being mild to moderate and twinging and whinging in exactly the same joints as usual. However, I’ve always had a dodgy stomach for years, the worst thing being wind – and almost as soon as I’d gone gluten-free the windiness massively reduced – almost entirely stopped in fact. That’s a big thing for lifestyle, if not for RA!

So then we went to Spain – wow, warmth, sunshine, fabulous food … but I didn’t bother to attempt gluten free while I was there, while at the same time not going out of my way to eat gluten! We had a pastry of some sort with a fruit salad for most breakfasts, a roll with some dinners and sandwiches for some lunches – we also walked very nearly walked my feet off … even hubby was getting a bit tired! I’ll post some photos when I get them on to my PC, but so far no time this week! We had a wonderful time and saw all sorts of amazing things and … with one notable exception, possibly caused by too much really exceptional paella, my tummy was fine! However, this fits in fine with the possibility of a mild intolerance rather than an allergy – no reason for stomach to react instantly in a bad way.

When we got home I’d run out of gluten free cereal and we weren’t going shopping for a day or two so I had bran flakes again – BAM! Stomach back to square one! Hmm, interesting. No more bran flakes I guess! So I then decided to play this week as gluten free cereal but not to worry about the other food and see how it goes. So far … not fantastic. I might well be going back to (almost) gluten free quite soon!

Unexpected Hospital Invoice

February 5, 2016 at 11:44 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
Tags: , , , , , , , ,

I got an invoice in the post yesterday from the hospital, ‘Charge for prescription fee’. I haven’t had a prescription fro the hospital – what the heck are they on about? Then I thought, ‘Aha – it’s probably for my appointment on 8th Feb – the injection’ so I phoned finance and pointed out that I had a pre-payment certificate, expecting a whole load of argument about, ‘Oh, we don’t deal with those’, but no – it went very smoothly and she processed it through with the pre-payment certificate- all fine.

Then I took another look at the invoice for some reason – not sure why – and read it properly. ‘Charge for prescription fee 17.01.16 – as no credit terms are offered, please remit by return. If no payment is received within 30 days the invoice will be passed to our debt collection agency.’

Now I was pretty riled and slightly confused – but imagine how some poor little old lady would feel receiving that – OK, it’s not a large amount of money but the aggressive tone is enough to give you palpitations if you’re that way inclined. (I’m not, luckily – it just made me cross!) So I phoned the finance department back and said, ‘Oy, what’s this about 19th of January. I wasn’t there on the 19th of January.’ only (slightly) more politely. ‘Just a moment, I’ll check …’ <Hold music> ‘Yes, that’s right, it was processed on the 19th of January.’ Deep breath … ‘Yes, I know that … but I wasn’t there on the 19th of January so what is this for?’ ‘Oh … er…. we’ve only got the same info that you have – we’re just asked to process the invoice. So you didn’t have an outpatient visit?’ ‘No.’ ‘And you didn’t visit A&E?’ ‘No …’ Did I not just say I wasn’t there? Was that not clear enough? Obviously not. ‘Oh … well, would you like to check with pharmacy?’ So she gave me the pharmacy number and said, ‘But don’t worry, it’s processed on your per-payment certificate anyway.’ And I’m afraid that riled me even more – typical number-cruncher attitude – it doesn’t really matter what it’s for as long as the numbers balance. But I didn’t say anything except a polite thank you for the pharmacy number.

So I phoned the pharmacy – ‘Oh yes, it’s for an injection – it was sent to your GP on the 19th of January.’ ‘

‘It better not have been – because they can supply their own quite handily I believe – they don’t need them sent from the hospital. Are you telling me I’m being charged for something I’m not going to get because my next appointment is with the hospital, not the GP? Or is it perhaps a dose that’s been sent to the hospital rheumatology department, because I do have an appointment with them on 8th February.’ And of course that’s what it was. Hurrah.

Is it really that hard to put on the invoice ‘For hospital methotrexate injection on 8th February’ and take out the whole ‘You are an evil person who hasn’t paid instantly for something you didn’t even know about’ bit? Apparently so. Grrr …

And that only took 20 minutes to sort out and was a one-off. A very intersting post from Carla over at Carla’s Corner, on the time needed to cope with a chronic illness. I have a tiny weeny fraction of what she has to cope with and it still gets me grumpy and slightly stressed.

Really hoping to get a full day’s work in

January 26, 2016 at 3:13 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , , , , , , , ,

Well the knee is certainly a whole lot better and I’m now tapering off the steroids – I ended up with 11 days on 40 mg and then a taper down to nothing. The bad news is, not surprisingly, it’s not 100% better yet, and so far I haven’t managed a full day’s work since this started. Fortunately (not from a financial standpoint, but otherwise) we’re not that busy right now. I’m not too worried as that’s often the case in January and there are things simmering away that should come in over the next few months, and it does mean that if I just can’t manage a full day then so be it. At least the boss can’t get cross with me! (Having said that, I’m probably my own harshest critic, so I guess I can get cross with me!)

On top of the whole knee thing, yesterday I had what was pretty much certainly a full-blown methotrexate-related stomach upset, so I’m very glad now that I’m going on the injected stuff in a couple of weeks! Feeling OK today, if a little tired, but I was a complete wreck for a while last night – thank heavens for Imodium is all I can say!

Still, even if I don’t last all day today at work, I’m confident that I’ll be doing so by the end of the week, so things are on the up! I hope things are going well for all of you too.

The bit at the end of a flare that I always forget about!

January 22, 2016 at 9:45 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , , ,

Yay – the swelling has pretty much all gone and so has the inflammation – I have pretty much full ‘bendability’ back in my left knee – woohoo … but yes, I’m still being careful! Of course if you have an injury, swelling and inflammation happens for a reason – to take more blood to the area to repair the injury, and to stop you moving it in ways that are going to cause the injury to worsen. Now in RA, given that it’s those helpful wee blood-cells that are actually doing the attacking and causing the injury, it kind of confuses things a bit, but nevertheless the swelling DOES stop you moving the joint in ways that are likely to cause more injury … and when the swelling’s gone, so is that warning and protecting system. And one thing hasn’t gone yet … the pain! Luckily the pain isn’t there all the time for me, which is great – I’m very, VERY glad about that – but it does mean that while I’m sitting at my desk pain-free and want to leap up and get a cup of coffee, it’s rather important to remember not to leap unless I want to end up an embarrassing heap on the floor!

Injecting methotrexate

January 19, 2016 at 9:20 am | Posted in arthrits, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 17 Comments
Tags: , , , ,

Hmm, how many times have I read posts about self-injecting drugs and breathed a sigh of relief that I don’t have to do that? Too many to count. Well, that time has ended, my friends – I will be injecting my MTX in three weeks’ time, after my ‘education appointment’ with the hospital. Mind you, I gather from a small amount of on-line research that this is a very easy subcutaneous (under the skin) injection; not the sort of nasty intra-muscular injection that biologics users have to endure. It seems to be a simple (?!) question of using something like an epi-pen to squirt the MTX in with, but I will find out more when I go and get educated. Here’s hoping I get the sweet nurse I’ve been speaking to on the (yes, actually helpful) helpline, and not the bored and horrid nurse I’ve never liked from day one. We shall see. Either way I will endeavour to be a good girl, listen hard, take it all in and get it right first time. (Not getting it right first time could be messy!)

The reason I’m moving to this course is that I sometimes get stomach problems that may or may not be from the MTX and that many people who take the dose orally don’t get the full benefit as some of it is digested, rather than moving on to the bits it needs to go to in order to work. By injecting, I can keep to the same dose, rather than increasing and risking the side effects that go with that, but hopefully get more benefit from the dose as all of it will go straight to where it’s supposed to go. That’s the theory, anyway. Apparently there are no other advantages or disadvantages of injecting – other than the obvious mild unpleasantness I’m assuming for the injecting!

 

Hospital appointment – only 7 months late

November 20, 2015 at 9:27 am | Posted in rheumatoid arthritis, rheumatoid arthritis (RA) | 13 Comments
Tags: , , , , , , , , , , , , , ,

I’ve just had my April hospital appointment – well, it was supposed to be in April – then they moved it to June .. then they moved it to August … then they moved it to September … then they moved it to November… but this time it didn’t get cancelled. Right, I thought, I’ve seen no one at the rheumy department in 13 months, I’m going to make a LIST of things that I need to ask about, ’cause my memory’s shot. I know doctors hate lists but when you have to wait 13 months for an appointment you don’t want to forget anything, right? Right! Shame I forgot that I’d made the list then, and consequently forgot to ask about the dry mouth, although I think I covered everything else… except memory problems of course. I don’t think a rheumy clinic is going to be that interested in my forgetfulness anyway!

Everything else was more pain and stiffness in the hands and feet than previously, two nasty flares in my knees over the past year and a lump on my finger.

For the first two, my methotrexate has gone up to 20mg from 17.5mg. The nice boy (sorry, young man – I’m getting old, all the registrars look like children to me) was slightly horrified that I started off eight years ago on 5mg (or possibly 7.5mg) as they’re now much more aggressive and he said they’d never start anyone on less than 15mg so really 20mg is nothing. He also said if stomach upsets were a problem them can move me over to a self-injecting pen. I wasn’t too keen on that idea – I’ve only had two or three stomach upsets over the year that MIGHT have related to MTX and it’s possible that none of them did – I have a dodgy tummy anyway!

For the lump on the finger, he said since it was on my left middle finger and I’m left-handed it was probably just where I rested a pen. I said, ‘Who writes these days?! I almost never hold a pen! I type everything,’ to which he laughed, agreed and basically said, ‘Dunno’. It’s not painful and it’s not growing alarmingly so ‘dunno’ is fine for the moment!

The ridiculousness of the DAS score was brought home to me yet again. As the nice boy put it, ‘You might as well be amputated below the knee as far as that’s concerned’ and one of my main problems is feet! Daft! It also included a rating of how has the RA been THIS WEEK. Who gives a monkeys about this week – I haven’t seen anyway for 13 MONTHS! He took that on board too, bless him, and although I scored ‘low disease activity’ with four sore joints and pretty good thank you for this week, he accepted that my RA wasn’t under control if I’d had two bad flares this year; hence the MTX increase.

He also said if the appointments started slipping again, I should phone reception and point it out and they’d stop it happening – my faith in reception, on a score from 1 to 10 – zero. Not that I really think it’s their fault – they’re just the front line when it keeps happening and I phone up and say ‘Oy’ and they say, ‘Not our fault,’ which it’s not!

Anyway, I’ve got a nurse practitioner appointment in February – let’s see how much that gets moved – not that I need it in February – May would be more sensible, but I’m hesitant to cancel!!

Hopefully not the ‘new normal’ … and ‘now in other news …’

October 5, 2015 at 4:58 pm | Posted in rheumatoid arthritis (RA) | 7 Comments
Tags: , , , , , , , ,

Well my knee is very definitely better – From being barely able to hobble across the room, one predniselone taper later and I’m almost back to normal – I’m back at work, doing my lunch-time walks again, carrying on as normal … almost. The things is I’m getting twinges in that knee after walks, and I haven’t dared try exercise other than walking yet, and it’s generally more painful and tender than it was – I still have huge tracts of time when it doesn’t hurt at all, I’m delighted to say, but it probably hurts more and more often than it did pre-flare. I don’t know yet whether that’s because things are still settling down after the flare – it’s been nearly two weeks now which is long for me but not long in the scheme of RA things – or whether there’s been some damage done to the knee and this is the way it’s going to be from now on.

Here’s hoping it’s the former!

As to non-RA related stuff, I’m very sad to have to say that ‘Enormous Cat’ died a few weeks ago. We miss him enormously! Well, Hubby and I do. Tiny Cat 2 isn’t the slightest bit bothered! ‘All the more crunchies for me’ I think is her attitude.

On the brighter side, we had a fabulous holiday to Whitby, where we were lucky enough to get a room upgrade in the very nice hotel and had a generally lovely, relaxing time, and, in spite of seriously steep hills, the RA pretty much behaved itself. I did wimp out of a really steep and windy trip up to see a waterfall … but it wasn’t as though we’d planned that anyway. We just stopped in a village cafe for a coffee, got chatting to a couple and their very friendly (and perpetually hungry dog) and he said ‘Have you been up to see it yet?’ And we said ‘See what’ and it turned out there was a fairly famous waterfall there. I did manage to see the wonderful Whitby Abbey, which I had been really wanting to visit for years.

Yorkshire_0164

The Yorkshire Moors were magnificent, and yes, we did have some good weather too, in spite of the Abbey photo above with the foreboding clouds!

Yorkshire_0126

And Castle Howard was deeply impressive … although the only bit I really liked was the Arts & Crafts Chapel – amazing! (The ‘new wing’, built in 17-something, was also nice, but the neoclassic earlier part of the house I personally found rather cold, although Hubby loved it!)

Yorkshire_0157

All in all a very fine holiday – but could have done with another week!

Knee flare

September 25, 2015 at 8:30 am | Posted in rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , ,

Poor neglected blog! It’s been neglected till now because RA has been under control and I’ve not had much to say, and now it’s going to be brief post because I’m typing on the iPad mini, which ain’t easy when you’re  used to touch typing!

So so why not use the PC? Because I’m having a great big flare in my left knee and can’t comfortably get my leg under the desk! This also means I can’t work of course! Very frustrating! It started Monday night, I had Tuesday off work and went back Wednesday when it was quite a bit better. Probably a mistake as yesterday (Thursday) it was a whole heap worse.

i phoned the doc and spoke to, I think, a locum.

‘What can I do for you?’

‘I’m having an RA flare in my knee and it’s about the size of a football.’

‘Oh?’ <slightly sceptical voice>

<Pause>

‘I do have RA! Had it about eight years!’

<pause>

‘oh, right, yes, of course …’

Oh good, he’s finally read some notes!

‘Well’ says the doc, ‘What do you normally do for that?’

‘You give me a prednisolone taper.’

‘Ah, when did you last have one?’

The honest response would have been ‘Duh, I dunno!’ I’m just hopeless with dates! I know it was a while back so I said ‘Maybe a year ago?’ For all I know really it was 2 or 3!

‘i can’t find it on the system.’

‘good grief! I’ve hardly been in the surgery this year! There can’t be that many visits to look through!’

‘Oh, I’m not in that bit. I’m looking at medication and all your monthly repeats are coming up of course.’

I bit my tongue and didn’t say ‘Well go into that bit then.’ I didn’t want to antagonise a man who was (hopefully) going to give me drugs!

‘Hm, I can’t find it. Do you normally start the taper with 4 or 6 tablets?’

durr… I dunno! ‘Four? … Maybe? … I think … Not sure.’

At this point I expected something on the lines of ‘you’d better come in and I’ll look at it and make an informed medical decision’. Instead I got, ‘Well let’s try four. I’ll send the scrip over to the pharmacy for you.’

I have to say he was very pleasant and I’ve shortened the nice chat we had drastically due to iPad typing, but still unsure whether to be grateful to doc for listening to and believing (eventually) the patient, or horrified  at the laissez faire attitude! As it saved me a very uncomfortable trip to the surgery I think I’ll opt for gratitude! Now I’m just sitting with my leg up and hoping the steroids do the trick!

I’m missing an art exhibition I really wanted to see, a workshop on identifying dragonflies and possibly a painting class, over the coming weekend, but I’m catching up on lots of reading and doing some crochet, which I’ve not done for ages, so there are good things ….kinda!

Are you tired of not having your fatigue concerns taken seriously?

June 17, 2015 at 9:03 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , ,

Last year I attended the Future of Health 2014 Conference, having applied to be a ‘citizen journalist’ and tweet about the event. There was a big focus there on listening to the patient, and that’s certainly not an isolated event. The excellent Creaky Joints report on the EULAR conference makes it clear that this is a much bigger thing. The thing that especially caught my eye was that FINALLY we’re being listened to regarding fatigue. Fatigue is not correlated to disease activity, a study by the UK’s National Rheumatoid Arthritis Society, which I participated in by answering a survey, found; in other words, I can have mild, controlled RA and still be bloomin’ … erm … exhausted the whole time! There’s a good chance that if you’re reading this blog you’re an RA sufferer, and if you are there’s a very good chance you already knew this, but I’m quite sure most of the medical profession did not – and does not, and it is through listening to patients (or patient-led societies) that they are finding out.

Combine this European-wide event with all the patient activity at the American College of Rheumatology event last year, and the fact that even in my little provincial hospital the consultant was genuinely wanting my opinion on things last time I saw him, and I really do feel there’s something positive going on.

I know it won’t be perfect, I know there are still plenty of medics out there who don’t understand RA at all, and even the specialists will often think what’s on their charts is more important than how we feel, but it certainly seems to be a move in the right direction.

The NRAS survey highlighted in the Creaky Joints report indicated that 66% of patients surveyed (in the UK) were never asked about their fatigue and 79% said it had never been measured. At the moment though, there is no generally accepted measurement of fatigue, so any fatigue studies are a bit hard to take seriously. The next stage should probably be to agree a way of measuring fatigue so that studies can be sensibly compared and conclusions reached.

And now NRAS has another survey – this one is all about how much input or influence RA patients have in their treatment decisions, so if you’re based in the UK and have been diagnosed in the last ten years, go ahead and fill it in; your views could form part of the next EULAR conference; who knows!

You know you’re stupidly busy when …

June 9, 2015 at 11:04 am | Posted in arthrits, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , ,

… the only time you can arrange to meet with your mum to give her some important advice about embroidery is at the doctor’s surgery!

In fairness, it’s partly because she’s stupidly busy too and away for the rest of this week!

We both needed a blood test, and we knew there’d be a bit of a wait, so we met, appropriately enough, in the waiting room! You may remember from my last post, things hadn’t exactly gone according to plan with the blood test attempt, but this time it couldn’t have gone better! When I got there, mum was actually having her test, having arrived a little while before me. It couldn’t have worked out better. As I sat down, she came out from the phlebotomist, we had just enough time to go through her needlework problem and I got called in!

I only waited about ten minutes to be seen and I needed that ten minutes to sort mum out!

Hurrah for the surgery – and I don’t often say that! When things run well, they run really well … a pity they don’t run well a little more consistently!

« Previous PageNext Page »

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