Another flare and another study

March 6, 2018 at 12:26 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m just getting over yet another flare. I had a few days of feeling fine, and then bam, one of those horrible all-over body flares. No individual joint was so bad that I felt the need to visit the doctor or phone the helpline or beg on bended knee (impractical in my case of course) for MORE steroids, but with what felt like every joint in my body stiff and achy, it was a pretty miserable couple of weeks. (Yes, I’m well aware that ‘every joint in my body’ is hyperbole, but it gets you down and makes you feel like that’s what’s happening.’)

I have now started by higher dose (20mg) of methotrexate and taken it twice so far, second time last night. It’s pretty unlikely to have any immediate effect but I’m hoping that it will at least have an effect. We shall see …

Anyway, right now things are relatively good – pretty stiff in the mornings, with some aches and pains, and then it all fades and I’m pretty much OK for the rest of the day … until night-time, which is literally a pain! Continue Reading Another flare and another study…

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Do as I say, not as I do!

February 12, 2018 at 4:29 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m sure I’ve banged on at least once or twice on this blog about how important it is for the patient to manage their own illness as much as possible, and how important it is to keep a track yourself of your blood test results etc.

Weeeeeell, I’ve had this dratted disease for over ten years now and for quite a lot of those years I assiduously kept track of my blood test results, which never showed anything in all that time. And eventually, what with a change in the system that meant we only see the Rheumy nurse once ever three months, and they stopped issuing booklets with the results in, and given that the results never showed anything, I stopped looking. They’re available to me on line but I just didn’t bother.

So, fast forward to my last flare, not that long ago, a couple of weeks ago in fact, when the doc told me my bloods were up and I said ‘But that never happens’, turns out it happens more often than i thought.

I mentioned in that last post that my hospital appointment had been cancelled, and they originally said the next date was July (!) but then I got a call to say they were putting in a clinic to make up for the cancelled one, and that was last week … so off I toddled dutifully to the hospital. As could be virtually guaranteed, although my knee played up slightly the day before the appointment, it was fine on the day –  thankfully the steroids had done their job! Continue Reading Do as I say, not as I do!…

Good news and bad news … and good news …

January 29, 2018 at 10:38 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, crafting, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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Well the good news is that my poor, neglected blog has been poor and neglected since RA Blog Week in September of last year because I have been really well! I’ve had the odd hip pain but only when in bed, which means I never remember to ask the doc about it because when I’m awake, I’m fine! Other than that I’ve been OK. In fact at the beginning of the month my regular 6-monthly hospital appointment was cancelled at the last minute because the doc was sick. The beleaguered receptionist rang to let me know and to apologise and was very pleasantly surprised when I said, ‘That’s fine – saves me coming in on a horrible, foggy morning and waiting around!’ ‘Oh,’ she said, ‘that’s not the reaction I’ve had so far!’ I pointed out that I felt fine and was busy at work and delighted not to have to waste all our time and she said, ‘You’re the sort of person I LIKE to ring!’ I wished her luck with the rest of the calls and that was that.

The following week I had a day off to do a textile workshop, which was great fun. (I was learning, not teaching. My last attempt at teaching was risible and should be enough to put me off teaching a workshop for probably another 10 years or so!) At the end of the day though I had TERRIBLE lower back pain – one of the worst pains I’ve ever had. I just didn’t know what to do with myself. Luckily after an early night it settled in to unpleasant but not terrible lower back pain for the next week or so. The very day after that back pain started I had my regular monthly blood test, which I thought no more about. Continue Reading Good news and bad news … and good news ……

The frustrations of not having a relationship with your doctor

June 29, 2016 at 4:32 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 7 Comments
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Thanks to the state of the NHS today (which, if you read this blog often you will know I harp on about endlessly) it is simply not possible to have a relationship with your GP these days (unless you’re incredibly lucky or live on some tiny island that actually has its own GP or something!) My GP practice has around 10 GPs plus locums. It’s pot luck who you get to speak to when you call and they phone you back, and then if they decide you should be seen you won’t see the person you spoke to that morning.

It also seems that they don’t have much of a relationship with the hospital and seem to have some sort of mythic belief in the power of the rheumatology helpline, as I’ve also mentioned before.

The myth

The patient calls the GP because they have an RA flare. This is a shocking waste of the GP’s time because these lucky, .lucky patients have an RA helpline that they can call and that will solve all their problems. They can speak to a lovely nurse* straight away and the nurse will wave her magic wand, waggle her magic pixie ears and solve the patient’s problem.

* Actually that’s the only true bit – the one we have at the moment IS a lovely nurse!

The facts

The lovely nurse, or even a secretary or receptionist, never EVER answers the helpline. It is an answerphone. That’s the way it’s set up. It’s not an answerphone on odd occasions when they’re exceptionally busy, it’s ALWAYS an answerphone. The message on the helpline says something like: ‘If you’re calling about a non-RA related problem, please call your GP. If you’re calling to change an appointment, please call reception. If you’re calling about an urgent need, please call your GP. If you’re calling to buy fish, please contact your fish monger. If you’re calling to moan about Brexit, please contact your MP. If you’re calling because you’re a moron, voted ‘Leave’ and can’t work out what a helpline is for, please call someone else and bother them. Now, if you really, really want to leave a message, we suppose you can. Give us your hospital number and name and telephone number and we’ll try to call you back in 24 hours – but no promises mind.’

I don’t know about you (actually I probably do, if you have RA) but I consider a flare pretty urgent.

While in an ideal world I would sit back on a couch, watch the telly and let my servants feed me grapes while I rested my knee and waited to see if it would clear up on its own, I do actually have a life (and no servants, and hubby is great but also has a life, and the cat just ain’t interested in helping), so I can’t just sit about and rest it. On that basis I can’t wait potentially 48 hours or more for the helpline to phone, and the nurse say, ‘Call your GP and get some prednisolone’ because then I can’t call the GP until Monday  as 48 hours is Friday morning and by the time I’ve heard back from the helpline the GP has run out of appointments. By that time I will have been flaring for over a week!

What Polly did Next

So … I went to the appointment grudgingly granted me by the grumpy GP. (Ooh, nice alteration that penguin!) Fortunately it’s with a much more pleasant locum GP than the one I spoke to on the phone. Unfortunately of course she doesn’t know me from Adam (or strictly speaking, as a doctor, she can probably spot I’m not Adam from the wobbly bits, so I should say she doesn’t know me from Eve). This means that she doesn’t know if I’m a moron or not, and therefore has to assume I am, as we always have to cater for the lowest common denominator.

‘How can I help you?’

‘I’m having an RA flare in my knees, as usually particularly in my left knee. It’s stiff, not very flexible and painful at times.’

‘Have you called the helpline, because really -‘

‘Yes.’

‘Oh, and what did they say?’

‘I said I’d called them, not that I’d spoken to them!’ I then explained, gently, ’cause she was a locum and therefore wouldn’t necessarily know any better, the realities of the helpline. (I didn’t mention Brexit or fish mongers.)

‘Hmm, you had a blood test only yesterday and your bloods were hardly elevated at all.’

‘They never are.’ The mere fact that my bloods are even a smidge elevated is a pretty strong indication of a flare with me. Sometimes I flare and there’es no indication whatsoever in the bloods. Now this is where a doctor relationship would come in handy. If she’d actually known me, known that I’ve had RA for nearly ten years, known that I’ve had umpteen flares in my left knee, known that blood tests are not a helpful indicator with me, known that I have a brain, we could have skipped the pointless bits, more of which are coming up.

‘Ah, well let’s have a look.’ Prod, poke.

‘Aaaaaaaaaaaaaaaaaaaaaaaaargh!’

‘Did that hurt when I pressed there?’

‘No, I just thought I’d make screamy gurgling noises for fun.’ (Nope, I didn’t really say that either, I just said yes.)

‘Can you bend it?’

‘This much.’ Demonstrated a very slight bend.

‘Ah. Have you tried pain killers… like paracetamol?’

I’m afraid I just looked at her and laughed, finally managing to choke out a ‘yes’, followed by ‘interspersed with ibuprofen.’ She looked amazed that I’d been able to think of painkillers all by myself.

‘Well I’ll prescribe a course of steroids. Now if they don’t work, we’ll have to consider other possibilities like osteoarthritis, as they should work for RA.’

‘Well, they’ve worked every other time I’ve had them, so touch wood that they will this time too.’

‘Oh … right.’ Look of mild astonishment, either that I’d had them before (it’s in the notes dear) or that I actually knew that I’d had them before, who knows.

So I thanked her very nicely, ’cause I’m a well brung-up penguin … and I might run into her again, and off I went to the chemist to get my steroids.

Again, after nearly ten years of RA, I think I recognise an RA flare when I see one … I really hope I’m not proved wrong and that the steroids do work again this time and it doesn’t turn out to be OA. That would be sooooo embarrassing after this post!

Wow – where did that come from?

June 27, 2016 at 1:38 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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I haven’t posted for a while because I haven’t really had much to post about – health-wise I’ve been good. I’ve been a bit stiff in the mornings for the last few days, but nothing to write home (or indeed blog) about. Then today I woke up stiff and tired, having had a migraine try to start in the night (successfully stopped with drugs!) I really couldn’t wake up for an hour or so this morning – not literally, I got up, had breakfast, went to work, but felt really brain fuggy. (Can’t blame the methotrexate as I take it Monday evenings and it’s Monday morning!)

Then when I got up to go to lunch, or rather tried to, I started to stand up and ended up collapsed back in my chair. No dramatic pain or anything – I was just so all-over stiff that joints weren’t doing what they were supposed to do! So after sitting a minute or two and flexing various bits (luckily on my own in the office so no one to see how weird I looked) I managed to get up and go for a short walk. I’ve been trying to walk about 1.5 miles at lunchtime but today I didn’t make 0.5 miles! The stiffness did mostly ware off but I was left with significant pain in the good ol’ left knee, where I usually get a flare if I’m going to have one. I’m really hoping I’m not!

Perhaps it’s the stress of ‘Brexit’ – the ‘Wow – where did that come from?’ title could also apply to that and it seems that partially to blame (apart from racists, stupid people and perhaps a handful of people with genuine concerns) may be the polls (as opposed to the Poles, which a lot of East Anglia would like to blame, I’m sad to say). The polls kept saying we’d vote to stay, so people decided that it wouldn’t matter if they had a ‘protest vote’. ‘Let’s vote leave, just so the government can see we’re annoyed with them – we’ll end up staying anyway.’ I’ve actually heard people say it, and then there’s this http://article in the Independent. No doubt people like this thought they were being terribly clever and original, but you get enough people doing the same thing (not that original after all guys) and guess what, we end up voting Leave.

Never mind the embarrassment of waggling stiff limbs about randomly in front of people, I feel embarrassed to be English at the moment! (I would say British but the Scots voted to stay!)

Hopefully the stiffness and knee pain will be a short-term issue. Alas, the same cannot be said for the state of Britain!

Baby Doc Shock!

May 18, 2016 at 10:04 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 4 Comments
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I hope those of you in the UK appreciate the Sun style headline! All will become clear shortly, but let’s start with a once upon a time, like all good stories. Once upon a time, two weeks ago in fact, I had ear ache pretty badly … I called the doc, saw the nurse practitioner, got antibiotics for an ear infection, was told not take my methotrexate that week so it didn’t fight the antibiotics (so to speak),  took the antibiotics, got better (but not 100%) and that should have been the end of that … only it wasn’t.

Guess who forgot NOT to take the methotrexate? Bad Polly Penguin!

So anyway, Monday night the ear was niggling quite badly again (and I’d been off the antibiotics for a few days) so I thought, right, I’d better call the doc tomorrow and not take the MTX. Of course yesterday morning the ear felt fine. ‘Still call the doc,’ said wise hubby … and I really, really meant to, but we were very busy at work and I completely forgot. The ear was fine all day. So I thought right, better not delay the methotrexate any longer and I took it last night (and had a most appalling stomach upset, incidentally!)

‘Still call the doc about the ear,’ said wise hubby again, ‘you don’t want it flaring over the weekend when you can’t get a doc,’ so I thought I would … and in fact the ear was niggly again last night and this morning, so at least that reminded me.

Got through to the surgery very quickly. The system is normally you speak to the receptionist, they get a doctor to call you back and then, if the doctor feels the need, you go in and see them. In this instance, to my amazement, as soon as I said what the problem was the receptionist said, ‘Can you come in now?’ So I did. Fantastic, I thought – red flagged because of my immunosuppression – I didn’t think they did that.

And now, finally … for anyone patient enough to have read this far, we get to the baby doc shock! I went in and saw the doctor, who I think is a locum (they mostly are as we have terrible recruitment problems – heaven knows why, it’s a lovely part of the world). She must have been just out of training. She was really lovely, hadn’t had the softness knocked out of her yet, excellent bedside manner, sweet as pie (much sweeter than the original ‘Baby Doc’) and very helpful. She checked both ears, checked my temperature, asked about the history of the last couple of weeks … confirmed I actually had some infection in both ears (which was a surprise) and asked me to come back in a week or so just to make sure everything was OK after I’d finished the antibiotics. All well so far.

‘Shall I take my methotrexate next week, while I’m taking the antibiotics?’ I asked. Baby doc looked thunderstruck. Heck! So much for the red flag for immunosuppression – she didn’t even know I was on methotrexate. ‘I’m on methotrexate for RA,’ I elaborated. ‘The nurse practitioner said not to take it last week because of the antibiotics, so should I take it this time or not?’ (I admit I failed to fess up to having taken the MTX last week!)

‘You’ve got RA? How long have you been on the methotrexate?’ she asked.

‘Oh ages,’ I said cheerfully.

‘But you’re so young for RA!’

My turn to be thunderstruck. Yes, I KNOW GPs have to know a smidgen of everything and there’s a heck of a lot of everything out there, so they can’t be expected to be experts on anything; yes, I know that she’s only just out of nappies … sorry, school … sorry, college;  yes, I know it’s a commonly held misconception … but … well, can I just say aaaaaaaaaaargh.

I didn’t say aaaaaargh to her. After all, she’d been very nice and helpful and I didn’t want to antagonize her … but I did point out that RA can hit at any age, and that mine had started nine years ago when I was 39. Unfortunately, perhaps, I didn’t really push the point … maybe I should have done. She’s probably still a ‘GP trainee’ and might have found the information valuable. Thing is, I was kind of in shock that she’d made that comment and I just didn’t react fast enough.

My apologies for the whole ‘RA’ and arthritis ‘community’ – I feel that I’ve let us down!

 

Bloody Surgery Again!

April 28, 2016 at 2:35 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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That’s doctor’s surgery, not a need to have surgery, I’m very glad to say!

I put in a repeat prescription two days ago, went in to collect it today, only to be told they didn’t have it in at the chemist. (The usual route is for me to deliver my requirements to the surgery, and they pass it on to the chemist, who is thankfully very nearby, for collection in 48 hours.)

So I went to the surgery and said, ‘I put in a prescription two days ago but they don’t have it at the chemist.’

‘Oh well, it can be up to 48 hours.’

‘It’s been more than 48 hours.’

‘Well it can be up to two days, if you put it in on Monday morning, it might not come out until later today.’

‘Why say 48 hours then? It’s been longer than 48 hours. Please could check on the system and see if it’s been done.’

Rather unwillingly she checked the system and said, ‘Yes, we issued it on the 19th,’ and sat back with a satisfied smile. ‘We issued methotrexate, folic acid, hydr… hy… hydrer … can’t pronounce it but we issued all that stuff.’

Deeeeeep breath … ‘OK, well they don’t have it at the chemist. What now?’

‘Can you go over to the chemist and check?’

Really deeeeeeeeeeeeeeeeep breath. ‘As I said, I’ve just come from the chemist.’

‘Well could you check again. It might be there.’

Well, it’s only up the road, not like I have anything better to do … oh wait, yes I do … never mind. Back to the chemist.

‘Could you check on the shelf please – the surgery say they issued it on the 19th. It’s happened before that it wasn’t on the database but it was on the shelf.’

So very grudgingly the pharmacy assistant checked the shelf. It wasn’t there. ‘Well it wouldn’t be,’ she said, ‘ it wasn’t on the database.’ I’m getting really tired of repeating myself at this point but I said, ‘It’s happened before. Would you mind ringing the surgery and telling them, or shall I carry on being a yo-yo and go back and tell them again?’

‘Would you mind going over? It’ll take us ages to get through to them!’ Well I had to concede that was a fair point so I went back over. By this time I had lost any vestige of patience i had. Funny, my mum thinks I’m very patient… but that’s just an indication of her extreme impatience!

I went up to the same receptionist, glared my most menacing penguin glare and said, ‘I’m back.’

‘Oh … it’s not there then?’

‘Funnily enough, no.’

‘But we issued it on the 19th.’

‘You said.’ More glaring.

‘Well have you had the methotrexate?’

‘No, of course not. I haven’t had any of it. That’s what I’m saying. It’s not there.’

‘Well …I can’t understand why they keep disappearing …’ HA! So it’s not just me this is happening to then, marvelous! Good old surgery ****’s up again! ‘Well, I’ll print it out right now.’

‘I’m going to run out of my medications by tomorrow night – I can’t wait 2 working days.’

‘Oh no, we’ll get a doctor to sign it and send it over this afternoon.’

So I’m waiting to see if they get it right this time – good job I have spare methotrexate as it takes the pharmacy three days to order it in!

 

So angry my glasses are steaming up

February 22, 2016 at 12:23 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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At the behest of the hospital rheumy nurse, I’ve just been down to the surgery to have a blood test, since as I’m hopefully now getting more methotrexate into my system with the injections, they need to make sure that I’m not overdosing.

I got to the surgery, I went over to where the board hangs up where you collect your number and wait to be called for a blood test – no board. I headed back to the reception queue – the MASSIVE reception queue, the slow reception queue – in fact it wasn’t slow, it was immobile.

It took me 20 minutes to get to the front of the queue to say, ‘Where are the blood tests?’ only to be met by a blank look and, ‘Isn’t there a board …’

‘No, that’s why I’ve been standing in this queue for the last twenty minutes.’

‘Oh … well one young lady went home sick so perhaps they’re not doing them.’

‘It would have been helpful to put a notice up to save me queuing, and probably halve your queue at the same time!’

‘Oh, isn’t there a notice up? I’ll talk to someone about that right now.’

‘Don’t bother – they finish at 11 anyway and it’s 11 now.’

At least I needed to go anyway to get a printout of my new repeat prescription with the Metoject pen and then put that in to be reviewed by a doctor.

I sympathise with the sick phlebotomist; I sympathise with the rushed off their feet reception staff; where I draw the line is attempting to sympathise with blatant incompetence. How much effort would it have been for one of the receptionists (perhaps while she was getting coffee, as one of them did while I was queuing) to write a quick note saying, ‘No blood tests today due to staff sickness. Please try tomorrow but ring first.’ Not long I suggest. It also wouldn’t take long to inform all the receptionists (all three of them) that there are no blood tests, and yet clearly that hadn’t been done either.

It’s a good job I wasn’t going for a blood pressure check as my blood is boiling – at least it’s keeping me warm on a cold day!

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
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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
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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.

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