NHS wonderland part 2 – peeing in a pot for 24 hours

July 9, 2012 at 9:36 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , , , , , , ,

Well, I went for my x-rays – appointment booked half an hour before the dermatology appointment, and it all fitted in fine – I had about fifteen minutes to find the dermatology department once the x-rays were over, and I found it without any problem. All going rather well so far.

Then I waited … and waited … and waited … and waited – but that’s just the way it is. Fortunately I’d remembered to take a good book!

Dermatology lady said she’s fairly sure I haven’t got lupus (hurrah) but I have got rosacea (boo). Unfortunately I’ve been applying gunk to my face for nearly five months now and it’s not going away at all, so the obvious solution seems to be ‘try it a bit longer, and in the meantime we’ll discharge you’. Hmm … thanks a bunch!

Having said that, she was very pleasant, really took her time, asked sensible questions and listened to the answers. For that, I don’t mind waiting a bit!

One of the things she asked was, ‘Do you get night sweats?’ to which the only possible response was, ‘Do I get night sweats! You bet!’ So we talked about the whole ‘early menopause’ thing and the fact that although it started 5 years ago I didn’t seem to actually have gone through menopause and the hormones had never actually been fully investigated.

And that led to the delights involved in the title to this post. ‘I think we should test your hormone levels,’ she said, ‘ but I’m afraid the test is a bit long-winded. It involves a 24-hour urine sample.’ I couldn’t resist the obvious response. ‘I can’t pee for that long!’ Poor lady must have heard that one a few times before but she was very patient with me!

I have to keep all urine I produce over a 24-hour period and put it in a LARGE sample bottle, which I had to collect from the labs in a beautiful LARGE bag with things like, ‘Biohazard’ and ‘warning – dangerous substance’ stamped all over it, as it contains hydrochloric acid to preserve the sample, once the sample is in there. Luckily I had brought a bag for my book and other bits so I just put it inside that – otherwise slightly embarrassing to walk around with.

I haven’t done this test yet as she wisely suggested waiting for a day where I could stay in the house for 24 hours, and there aren’t many of those, but I’m planning to do it soon. Once done, and I’ll finish my 24 hours at 8 0′clock one morning, I have to jump in the car, dash over to the hospital, deliver the sample ‘for immediate testing’ and then dash up to the top of the hospital for a blood test – which should take place straight after the sample is finished – a bit tricky since I live 30 mins or so from the hospital! Never mind – hopefully it’s not THAT critical.

If anything comes out positive/negative/worrying about this test, that’ll mean further referrals etc. as it’s hardly a dermatology issue. It’ll be interesting to find out either way though, as the hot flushes and night sweats are horrendous at the moment and if there is something hormonal going on as shouldn’t be, it would be nice to know!

 

 

In the meantime I shall continue to be a ‘ruddy cheeked penguin’ – a rare breed indeed.

Polly’s Adventures in NHS Wonderland

July 3, 2012 at 8:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , , , ,

Something’s going on. Call me a nasty, suspicious, cynical penguin, but this just isn’t normal. I went for my routine rheumatology check – you know, the one where they say, ‘Oh go away – we’re not interested in you.  Call those symptoms? Ha! I see people in a much worse state than you every day!’ (As though that has anything to do with the price of fish.) But this time it was different …  It started off with the usual intro as though we’d never met before, but this time, as I looked at her blankly, she actually said, ‘Oh – we’ve met before, haven’t we?’ Then she looked at the notes – yes, the ones she’d taken in with her five minutes before she called me in, but obviously hadn’t read, and went, ‘Oh yes, I saw you last time.’

OK, not an auspicious start, but nevertheless, better than expected. But here’s where it gets weird. She asked how I was. I said fine. She said ‘scale of 1 to 10’ and I said ‘1’. She looked blank. ‘Well, is there anything you want to ask me?’

‘No, not really.’

‘Well … is there anything I can do for you?’

‘You can say, “You’re fine. Go away and come back next year,” and then I’ll do that.’

‘Yes, but … I mean surely … ‘

What’s going on here – you usually can’t wait to see the back of me.

‘I know – you haven’t had any x-rays for ages. We ought to check there’s nothing going on below the surface that we’re unaware of.’

Really – I was diagnosed in 2007. In 2009 I mentioned x-rays and how the guidance said they should be done a year afterwards and then every so many years – but it was poo-pooed. ‘No, you’re fine. We see worse people …’ etc.

I haven’t had any x-rays done since and it hasn’t worried anyone.

‘Good heavens, do you know, you haven’t had any x-rays done since you were diagnosed!’

‘Yes, I know.’

‘Well I really think you should have them done. I know it’s inconvenient coming in specially and I know they’re a bit of a pain, but I really think …’

‘Fine. I’m happy to come in.’

‘Oh!’

And then, to make matters even more Alice-down- a-rabbit-hole, she said they could arrange the x-rays to fit in with another appointment I had, to save on trips in. Hang on – when has the hospital ever put itself out to help its out-patients? This is new – but I’m not complaining.

Stupidly, Alice never encountered a penguin, so here she is with a flamingo

Stupidly, Alice never encountered a penguin, so here she is with a flamingo

Of course, in the next couple of days the universe got itself back on track. The appointment for x-rays arrived, on a completely different day to my other appointment and at an impossible time two days from when the letter arrived.

Ah – that’s more like the NHS I know and love, I thought. But wait … I emailed them (yes, they’re now so far into the modern age you can email them, woohoo) and said, ‘Sorry, can’t make that, but I will be in the hospital on this date for this appointment. Can you fit round it?’ And wha’-do-ya-know – they actually did!

So … did it work? Did they fit in? Did I run late for the next appointment? For answers to all these questions and more, you’ll have to wait for the next exciting episode of … Polly’s Adventures in NHS Wonderland.

RA – it’s not ‘fair wear and tear’!

May 4, 2012 at 9:20 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
Tags: , , , , , , , , , , , , , , , , , , , , , , , , , ,

One of the many things people with rheumatoid arthritis battle with is the many misconceptions around the disease, the most ‘popular’ of which is that ‘arthritis is wear and tear on your joints’. One of the reasons this misconception is so hard to grapple with is that it’s true – sometimes. There are many, many kinds of arthritis – all arthritis means is joint inflammation. It comes from the Greek arthron (arthretes or similar depending on which dictionary you look in!) for joint, and –itis, a suffix used to indicate inflation, so it means inflamed joint.

What the word arthritis doesn’t tell you is why the joint is inflamed, and thereby hangs a tale! It gets even more confusing because arthritis tends to be split into the many kinds of ‘inflammatory arthritis’ on the one side, and osteoarthritis, which (is ‘wear and tear’ though by no means always fair!) on the joints, on the other. And yet arthritis means inflammatory, and of course osteoarthritis can cause some inflammation too, so it makes it even harder to explain the differences simply.

Perhaps the most important thing is that however unpleasant, debilitating and downright painful osteoarthritis is, it affects the joints and only the joints. Rheumatoid arthritis and the other related autoimmune diseases are just that – diseases, aka illnesses, and can affect considerably more than your joints.

The difference in a nutshell

Osteoarthritis (also known as wear-and-tear arthritis or degenerative joint disease) is caused by the cartilage between the bones in a joint wearing away or breaking down.  The cartilage basically sits between the bones of a joint and stop them rubbing together. When they do rub together because the cartilage is worn away it can cause a great deal of pain and debilitation.  It often (though by no means always) occurs in one joint, and may be a joint that has been used a great deal e.g. a blacksmith getting osteoarthritis in an arm joint.

Rheumatoid arthritis on the other hand (and that’s the one I’m going to talk about because it’s the one I know, as I live with it every day) is a chronic, progressive, inflammatory  arthritis. Chronic means long-term, it’s there and, in this case, it’s not going to go away. Progressive means without treatment it’s likely to get worse. It is an autoimmune disease, whereby, for reasons not yet understood (though theories abound) the body’s immune system attacks some of the body’s own tissue instead of (or as well as) invading bacteria etc.  In rheumatoid arthritis (RA) it is the synovium (joint lining) that is the main target of attack, but many other organs can be affected too.

Spot the difference

Even doctors find this one tricky, which is why RA can sometimes take a very long time to diagnose. Another problem is that RA seems to crop up with infinite variety; just about every patient ‘presents’ differently when they go to see their doctor. Some things to look out for though are:

RA will almost always occur in more than one joint at the same time

  • RA will often involve obvious swelling around the joints
  • RA will often involve obvious redness around the joints
  • People with RA will often find joints extremely stiff first thing in the morning, with this stiffness wearing away gradually over a period of an hour or more
  • People with RA will often feel unwell, with a kind of general ‘don’t feel good’ feeling including tiredness, headaches, lethargy and fatigue
  • RA apparently often occurs ‘symmetrically’ – i.e. if you have it one hand, it will also occur in the other. If you have it one knee, it will crop up in the other one too.
  • RA frequently affects the small joints – those in the hands and feet, whereas osteoarthritis often affects the larger joints.

But see all those ‘often’s and ‘almost’s? That’s why it’s so hard to diagnose! The worst of my RA, for instance, has been in my knees and shoulders, so I don’t fit the ‘small joints’ pattern, although it does all affect hands and feet.

The good news as told by Pollyanna Penguin

 If you have osteoarthritis, short of joint replacement and painkillers there’s probably not a lot you can do about it (although maybe glucosamine helps in some way – the jury is out!) If you have rheumatoid arthritis there are treatments available. They are many and varied, and some work for some people and others work for others and you’re really incredibly unlucky they won’t work  for you ; if you’re new to this whole RA thing, don’t panic when you read the blogs all around the RA community. There are hundreds of people out there whose RA is under really good control through drugs and/or other treatments, and as a consequence they consider they have better things to do than blog about arthritis! So those of us who blog tend to be the unlucky ones – although of course there are exceptions. I’m on the fence here – I’m a lucky one – things are pretty much under control, and I only blog once in a while when I have something to say or those nice folks over at IAAM ask me to!

There are many medical treatments out there, and there are new ones coming out quite often too. The new ones, largely ‘biologics’ tend to be very expensive at the moment so your doctor will probably start you off on some of the older ones, which are ‘cheap as chips’ as one of the rheumatology nurses at my hospital put it. I’m on that old stalwart methotrexate. It’s the most commonly used drug I think, it’s certainly ‘cheap as chips’ these days, and for me it really works. Some people have nasty side-effects from it though, and for others it just doesn’t do the job. If that’s the case then it can be tried in combination with other things, or you might be moved on to one of the spangly new biologics.

You might, of course, opt to go for a non-medical treatment. My personal belief is that it’s a good idea to get things under control with medicine and then use other things such as physiotherapy (physical therapy is the US translation!), occupational therapy, acupuncture if you think it helps, dietary things etc. added on top, because I believe that this is a progressive disease and that these various medications, although they won’t flat out cure you, can and often will stop the progression, which is hugely important. Other people disagree and use complementary therapies, which seem to help them. It’s your choice – but please, just do your research before you decide!

Support

So, it’s not all doom and gloom – anyone with RA (or osteo for that matter) would rather not have it, but there are things that can be done, and there is also support out there, from NRAS and Arthritis Care in the UK, the Arthritis Foundation (and others I’m sure) in the US and UK, and now from IAAM, the International Autoimmune Arthritis  Movement. IAAM are doing a lot to increase people’s awareness and understanding of what autoimmune arthritis (RA being one kind of that) is, and I’m proud to be a member and a ‘blog leader’ for them. They have  established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event!  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help people with autoimmune arthritis and their supporters in managing their diseases. WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

World Autoimmune Arthritis Day  (WAAD) website link- www.worldautoimmunearthritisday.org

WAAD registration link- http://events.r20.constantcontact.com/register/event?llr=0&oeidk=a07e5n7i1aq5f98d0e9

Happy Birthday

And what’s more, it’s IAAM’s first birthday on May 7th. Slightly in advance Happy Birthday to you, Happy Birthday to you, Happy Birthday dear IA(AAAA)AM*, happy birthday to you.

* Can’t sing it properly without some extra As!

‘I’m just going to rest my nose on my elbow for a minute’

May 2, 2012 at 9:36 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , , , , , , , , , , , ,

If I had to come up with a list of the top ten things I never thought I’d be saying, that’s got to be up there among them!

I had a physio appointment yesterday for my dodgy shoulder – the one the doctor said was RA and would probably need a joint injection. Well … according to the physio it isn’t and it won’t … and I think she’s right. She thinks it’s likely to be inflammation relating to a previous episode of joint inflammation which caused the joint capsule to swell, so that the muscles around the glenohumeral joint, the ‘rotator cuff’, were pushed about a bit and got inflamed as well. The joint problem seems to have died down, leaving the rotator cuff problem zinging away like a good’n, unfortunately.

Apparently one in three people over the age of forty have a rotator cuff problem anyway, nothing to do with RA, so it might not even be linked, but since I’ve had no injury etc. to exacerbate it, it probably is.

Anyhow, this physio seems to have had prior training as a torturer, although she assured me that she started as a physio straight out of uni last year, but I’ve got to admit that with her heavy and darned painful massage, ultrasound and various exercises, the shoulder is a whole lot better already today, although she says it will probably take three months to heal completely … and that’s if I’m a good penguin and keep remembering to put my nose on my elbow!

Yes, that’s one of the bizarre exercises I have to do to stretch the muscles. Stand feet about a foot from a wall, rest my forearm on the wall in front of me with my upper arm at right-angles to the shoulder joint  and then … rest my nose on my elbow, for about three minutes a day, but not necessarily all at the same time. It really does stretch those muscles! Looks extremely odd though. I can hardly wait to do it in the office and entertain the junior penguins! (Or perhaps I’ll just slink off to the loo and do it there!)

The other main exercise involves lying on the bed with a can of beans and doing a kind of weight-lifting thing. At least having a can of beans by the bed makes it easy it to remember to do the exercise!

Will I never learn?

March 18, 2012 at 9:11 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 2 Comments
Tags: , , , , , , , , , , , , , , ,

No … probably not!

It’s just possible, maybe, perhaps, that I’ve sliiiiiiiightly overdone it this week! The plan for this week was that on top of work (quite busy) I would also have: the dreaded surgery Patient Panel on Monday – bound to be acrimonious as they’re introducing a telephone triaging system which has gone done like a lead balloon with most patients; my second Spanish lesson on Wednesday (a drive all the way in tew the ci’ee (aka Norwich); on Thursday morning a reunion meeting for a course I attended last year (again in the ci’ee); an Embroiderers Guild talk to attend on Friday night (in the ci’ee); a botanical drawing course all day Saturday (an hour’s drive away); and finally taking mum out for a mother’s day meal (in the ci’ee again) today.

I had also committed to growing a sour-dough started for ‘Herman the German Friendship Cake’, with the extra starter to be passed on to three friends on Thursday and the cake baked on Friday.

What I hadn’t considered when taking all this on was the possibility that BOTH the ‘junior penguins’ might be off sick (there’s a dreadful sinusitis bug raging around our wee town at the moment!) and that I’d therefore be incredibly stressed at work, trying to meet deadlines and earn money for three! Hubby suggested I needed a notice above my desk: ‘Penguin: Working to earn your sick-pay.’

Something had to give – and unfortunately it was the reunion, which I was really looking forward to. I obviously couldn’t have the time off work with the other two both sick! I went to the patient panel – and walked out after 1.5 hours, having spent the first 45 minutes wasting time discussing stuff we’ve been discussing since it started in 2008. It was just starting to get acrimonious when I said sorry, I had to go, but I’d made my points by then.

I was already tired by Wednesday but determined not to miss the Spanish lesson, as it was only the second one, even though my brain was pretty fogged by the end of the hour and I’m not sure much went in! I must remember to say no to the generous offer of Spanish-strength coffee when  I arrive; I didn’t get much sleep that night due to caffeine buzz!

Nevertheless, the work got done, the cake got baked (and delicious), the talk got went to (see – told you by brain’s fugged – can’t do grammar proper at the moment)  and the plants got drawn, but I have a nasty feeling I’m heading for a flare – or at least a fizzle! Well no, let’s be honest, I’m HAVING the fizzle and hoping it’s going to be a damp squib and not a flare!

At least mum’s driving us into the ci’ee today for our Mother’s Day meal so all I have to do is eat and pay. Think I can manage that!

The joys of a winter routine hospital appointment

December 23, 2011 at 9:03 pm | Posted in Me, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , , , , , ,

I really hate the winter half of my six-monthly hospital appointments. I suppose it could be worse. I have the nurse practitioner visit (usually bad) in summer (not so bad), and the consultant or registrar visit (usually OK) in winter (not so good), so you could say it balances out. I have just had my visit to the register – a very nice young lady who, while obviously struggling with the basics of the English language, still clearly had an excellent grasp of autoimmune diseases! It took rather a long time to find any of that out though.

At the risk of sounding like one of those very bad school essays (‘What I did on my holidays: I got up at 4am. Mummy was cross and said go back to bed. I got up again at 6am. We left the house at 7am. We arrived in Wales at 11:30 am’ etc.) here’s why I hate the winter appointment. I left work at 10:15 for what should have been an approximately half-hour drive to the hospital for an appointment a bit after 11. Why leave such a long time? Because it’s December. The weather was a bit rubbish and if you have an appointment you can guarantee to get stuck behind something slow. I did. Then there’s the car parking – always fun. I struck gold in the third car-park I tried. As you can imagine, after driving round three car parks, all for several minutes, I was starting to cut it fine, but as soon as I reached the Rheumatology Department I realised I need not have worried. The waiting room was heaving! I handed in my appointment letter, took my seat and waited … and waited … and waited. The usual charmless nurselet called me in, did the ‘weigh and wee’ and then I got sent to the equally busy inner weighting room … where I waited … and waited … and waited.

After about an hour a nurse came out and wrote next to my consultant’s name on the notice board ‘running one hour late’. Twenty-five minutes or so after that, I finally got seen. Fortunately I’d taken in a good book. Unfortunately, as it wasn’t so cold as last year, and they were probably even more short-staffed, no one offered us a drink. I hadn’t had time for a drink on arrival because it was time to check in, so I was a bit parched.

Useful appointment with nice registrar followed, which culminated in a further referral (who knows where, who knows when … but no hurry, nothing urgent!) and a blood test. ‘Will you give me a form so that I can get the test at my GP?’ I asked. ‘No, no,’ she said, no doubt intending to be most helpful, ‘you have it here. Just go to the blood test department …’

So, by now thirsty and pretty peckish too, but thinking I’d better get this done before heading for a café, I went and found the blood test department. Guess what? The waiting room was heaving AGAIN. That’s another reason for hating the December appointment. People get ill in the winter!

I went up to reception and got a ticket – 73. The number just called was 63. Only ten, I thought. Surely it won’t be that long. ‘What’s the waiting time likely to be, just roughly?’ I asked the receptionist. ‘Hmm,’ she said. ‘Could be up to 45 minutes … but it might be much quicker.’ Aaaaaaaaaaaargh. 45 minutes? Aaaaaaaaaaargh! And we were so busy at work too. So I phoned the duty junior penguin at work and went ‘Aaaaaaaaaaaaaaaargh’ down the phone at her. (It’s in the job description – ‘be prepared to listen to senior penguin going aaaaaaaaaaaaaaaaargh periodically’.)

As it turned out though, the queue did go down quickly. All of a sudden they were charging through people and I was the only one left, and then my number came up, and in I went to be processed. (It did feel a bit like that this time, but given the numbers they were having to get through, I can’t really blame them!)

And so back home, stuck behind another slow lorry most of the way and then, somewhat peculiarly, a slow ambulance!  I eventually got back into work at around 2.15.

Four hours out of work: total time with medical staff, approximately 15 minutes. Frustration factor: high.

Merry Christmas, Felis Navidad, Feliz Natal and Happy Chanukah to all.

Keep drinking the milk, girls (and guys ?)

December 6, 2011 at 9:49 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
Tags: , , , , , , , , , , ,

According to a study from the Mayo Clinic, women younger than 50 with rheumatoid arthritis are very significantly more at risk of sustaining osteoporotic fractures (for which you presumably have to have osteoporosis first) than women of a similar age who don’t have RA.

The article is somewhat confusing, as it also states ‘Young men with rheumatoid arthritis (RA) are also at an increased risk, but not until they are over age 50 years.’ Um … is it me? You can find the article here and make up your own minds.

I think what the researchers are saying, and what the article is trying to say but not very clearly, is that anyone with RA is more likely to have osteoporosis than those without this dratted disease, which is common knowledge amongst most rheumatoid arthritis patients, I suspect, but if you’re under 50 you’re much more likely to get it than those who don’t have RA. Cheerful thought for the day!

Oh well, forewarned is forearmed; don’t let your calcium levels go down! (Not actually sure what you do to stop ‘em, except drink milk, and of course most doctors won’t be testing for it unless you’re over 50 … or 60 …) Perhaps that’s why more ‘young’ women actually sustain osteoporotic fractures – because it’s not until they have a fracture and wonder why that anyone realises they have osteoporosis? Cheerful thought number two!!

Off for a pint … of milk!

There’s no telling some people (Also ICK!)

November 5, 2011 at 9:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
Tags: , , , , , , , , , , , , , ,

I met up with a friend yesterday who I haven’t seen for ages, in spite of the fact that we work in the same tiny town. It was great to see her but I was somewhat dismayed when she asked me about my arthritis and then told me that her husband seemed to be suffering from what appear to be RA symptoms too.

‘One of his fingers is permanently hooked now,’ she said, ‘and sometimes when he goes to open a jar or something he hand locks around it and I have to force the fingers open one by one. I hate doing that, it’s gross.’

My immediate reaction was something like ‘Aaaaaaaaaaaaarrrrrggghghhhggh!’ This was partly for the grossness and partly because you MUSTN’T do that. ‘Every time you force his hand open you’re damaging the joints more!’ I nearly screamed.

‘Well,’ says she with a shrug, ‘what else can we do?’

‘What treatment is he on for it?’

‘Oh he isn’t on any treatment. He’s not been to the doctor about it.’

Did I mention Aaaaaaaaaaaaarrrrrggghghhhggh?

Well … erm … that might be your answer about what else you can do about it then! Now I know some people don’t want to go on treatment and have some success with alternative therapy or diet, and the very best of luck to them, but he’s not doing that either. He’s just ignoring it and waiting for it to go away. What makes it worse is he has a very active, physical job and he really NEEDS to be able to do this stuff.

On reflection, perhaps that’s why he’s not going to the doctor – he’s terrified of being told that he shouldn’t/can’t carry on working, so he’s just trying to ignore it. I can kind of sympathise with that … but he’s still crazy if you ask me!

The flu jab comes of age!

November 1, 2011 at 6:05 pm | Posted in Me, rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , , , , , , , , , , , , ,

I’ve been noticing a few improvements around the whole flu jab situation this year. In the previous few years I have a) struggled to book in for one because the surgery receptionists didn’t know about immunosuppression b) been disgusted at the ‘cattle market’ approach to the flu clinic, which I thought was restricted to our rural Norfolk surgery, but then found, via Helen at Pens and Needles extended to Canada too!

Here’s the way it used to work: You fight to get into the clinic in the first place, get your slot (which if I remember rightly was ‘morning’ or ‘afternoon’) and then turn up to join the queue extending all around the waiting room and out the door. You are told to be ready and waiting with your arm exposed ready for jabbing, even though the surgery is freezing because the door is permanently open due to people standing in the entry waiting for flu jabs. The receptionists ask why you were there if you looked under 70, and are puzzled when you tell them … but let you through anyway.  You have now been singled out in front of hundreds of somewhat elderly people who are now all staring at you and wondering if you’re trying to con the system, so you feel great! You get to the far side of the waiting room eventually and are asked to ‘fill in this form’. The form has nothing to do with the flu jab but asks if you smoke and would like anti-smoking advice. (Apparently doing this meant they could tick a box somewhere and claim extra funding for ‘offering anti-smoking advice!) You get through to a corridor where all the doors of the rooms are open and wander about until someone says ‘in here’. You go in, and with the door still open and other bewildered patients pottering about in the corridor behind you, you’re asked, ‘Why are you having the flu jab?’ You tell them … again. They say, ‘OK’ and jab you, and then follow that up with something like, ‘Oh – hope you aren’t allergic to egg or pregnant – should have asked you first.’ Fortunately I was neither!

Here’s how it is now: You phone up and say you need a flu injection. The receptionist says fine, she’ll book you in. She goes to your record, sees you’re not elderly and says, ‘Why?’ You say, ‘Immunosuppressed.’ She says, ‘That’s fine,’ and books you in. To your astonishment you’re given an actual time, 3:10, not ‘afternoon’. Then later on in the week you find out that some of your friends have already had their jabs at the surgery and they’re doing it like a proper clinic – called up individually, closed doors, proper checking that it’s OK to give you one etc. Wow – you’re impressed!

You go for your regular methotrexate blood test and notice a big poster in the surgery window about, of all things, getting the flu jab if you are immunosuppressed! After a general rheumatology chat, taking bloods and general chitchat the nurse says, ‘Have you had your flu jab yet?’ ‘No,’ you say, ‘ but it’s booked in for next week.’ ‘Would you like it today?’ she says. After picking yourself up off the floor, rubbing your ears and asking her if she could please repeat herself because you thought she’d just offered you the flu jab today, and finding that in fact that is what she said, you say, ‘Yes please.’ After she’s sucked the appropriate amount of blood she goes and gets the flu injection. ‘I don’t know if I can roll this shirt up far enough’ you say. ‘ I wasn’t prepared for this.’ ‘That’s OK,’ says the nurse with a grin, ‘We can do it through the shirt. On second thoughts better not, the needles are so flimsy we’re having trouble just getting them through the skin!’

Aha – you think – I’m back in the land of normality now! Damn, I was enjoying this strange fantasy world where the surgery actually seems to be doing flu jabs in a sensible and logical manner.

But then you find you can roll up your shirt and in fact the needle goes in fine, if somewhat painfully!

‘Right,’ you say, ‘I suppose I’d better go and cancel my appointment for next week at the front desk.’ The nurse smiles and says breezily, ‘Oh no need – with this new database system we’ve got I can do it really easily from here,’ and she does!

Now you might think surely that wasn’t actually that much to ask – you might say, as ‘brother Penguin’ did some time ago, that your surgery has been doing this for years, but when you’ve become conditioned to being in the cattle market scenario for so many years, this just seems incredible, fantastic, too good to be true …but it’s not. It really happened.

Wooohoooooo!

Incredibly the nurse told me that some patients had actually complained ‘We wanted to come to the big flu clinic like last year!’ There’s no pleasing some people!

Polly Pulls It Off

March 14, 2011 at 9:34 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
Tags: , , , , , , , , , , , , , , , , , , , ,

This perfectly innocent post title, no double entendres  intended, is supposed to set the 1950’s scene for you. Maggie (friend and frequent commenter on this blog) has always said that the town where I live is like stepping back into the 1950s, and generally I reckon this is a pretty good thing. The 1950s is a pretty nice, cosy, friendly place to live; that is until you get hit by … da da da daaaa, 1950’s Doctor Man.

Alas, the knee has continued to flare and I decided, after having a lot of stiffness and pain yesterday, that I really should go back and say a) the steroids worked but they ain’t workin’ no more and b) can you ask the physio to have a look at the knee please? So I did. Of course, as I’ve mentioned before, if you make a ‘same day appointment’ (and the choice is same day or 2.5 weeks away if you’re lucky) then you can’t choose your doctor; you just see whoever is available.

Now when I did this two weeks ago I hit the jackpot with Dr Locum Eye-Candy, but alas, this week my luck ran out and I got 1950s Doctor Man. Now don’t get me wrong, he was pleasant enough in a dried-up old stick kind of a way, and true to his 1950s roots he did listen patiently and he did actually bother to examine me properly (two things you certainly can’t count on these days in the NHS!), but then the downside of being in the 1950s kicked in, and I got the 1950s lecture about RA. I thought things had come on a lot since this kind of thing: ‘Well, that’s the nature of the disease. It’s a progressive disease I’m afraid and it will flare now and then. Now, I’m not trying to depress you but really that’s just the way it is and there’s not a lot you can do about it. You’re on a high level of methotrexate and other medication already, so … ’ And so on, and so on, for about five minutes.

I’m not actually saying he’s entirely wrong, by the way – fundamentally that’s probably true, but he didn’t make one single suggestion about sensible things I could do. OK, I wasn’t expecting him to suggest Reiki or a gluten-free diet or anything else that your average 2011 British GP would consider a bit ‘far out’, but what about, for example: exercise … or rest, apply heat … or cold, consider a steroid injection in the joint, come back if it gets worse, have physio, get hubby to do all the cooking, washing up, shopping etc. for the next few weeks. <Grin – of course he wouldn’t suggest that! Not the done thing at all in the 1950 to have a man doing all that!>

I must admit I wasn’t feeling very ‘with it’ and I damn near forgot to actually ask what I’d gone in to ask, which was since I was doing a 50 minute round trip every week for ultrasound treatment on my shoulder at the moment with the physio,  could he please ask the physio to treat the knee too? Finally I did remember, and, give him his due, he agreed immediately and not only that but he actually wrote me a note (with his very smart 1950′s fountain pen) to take in with me, hopefully circumventing the need to wait five weeks for the next official appointment for a knee referral, by which time the flare will probably be over.

I did also ask him whether I should be exercising it or resting it, and he said definitely resting it … but is this right, I wonder, or is this just more 1950s medicine. Not that long ago the only recommendation for RA was ‘bed rest’!

« Previous PageNext Page »

Blog at WordPress.com. | The Pool Theme.
Entries and comments feeds.

Follow

Get every new post delivered to your Inbox.

Join 82 other followers