Pollyanna Penguin’s middle-size adventure

November 27, 2009 at 11:45 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Following on from my big adventure to Barcelona earlier in the year, I’m off to Wales for the weekend. It’s going to take substantially longer to get there than it did to get to Barcelona. I’m going by train and I’m rather dreading the journey.

Fortunately Maggie, she of the occasional comments on this blog and provider of the link to the real life chocolate pizza, is putting me up for a night on the way there, so that breaks the journey a bit, but next week I shall be coming home from Wales in one fell swoop.

On the train I’ll be able to get up and stretch my legs now and then, and I might even be able to sleep for part of it, so it has advantages over car travel from an R.A. point of view. Hopefully I won’t get too madly stiff. What I’m worried about is the fact that I have a total of ten trains to catch in the next five days, excluding London Underground links which are the biggest pain of all, and the British train service is notoriously unreliable … to put it politely. Combine that with severe weather warnings across the south of England (I have to travel through London both ways), and it could be an ‘interesting’ weekend.

At least I’m looking forward to seeing Maggie and family and my friends in Wales. Pity that all their Christmas presents are due to arrive in the post to me at work today, and I’m not going into work – I didn’t time that very well!

An unexpected treat!

November 23, 2009 at 8:13 pm | Posted in Me, rheumatoid arthritis (RA) | 4 Comments
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We’d intended to have a day trip up to Blakeney Point yesterday, on the north Norfolk coast. It’s an area of slightly bleak but beautiful marshland, famous for its bird-life and a sunsets, and a lovely place for a walk. Unfortunately it was pouring when I woke up, and I was as a stiff as a board and in pain, so pretty much my first thought on waking was, ‘We ain’t goin’ nowhere.’ My second thought was, ‘Then again … it is only half-past-five…’

In typical Polly Penguin doing the positive thing fashion I thought, ‘I’m sure if I go to sleep again I’ll be fine when I wake up, and so will the weather.’ I wasn’t. It wasn’t.

But gradually, with some TLC (and perhaps more importantly coffee) from hubby (and some TLC from middle-sized cat too) I started to thaw and bend, and the sun started to come out, so we thought we’d risk it and go.

I’m so glad we did, although our arrival and first few minutes were not auspicious. It’s quite a long drive so we felt the need to avail ourselves of the facilities and then top up on coffee, but although Blakeney is a famous beauty spot it is remarkably unspoiled. This is of course a GOOD THING … until you want coffee and a loo. I remembered seeing a big sign outside the King’s Arms saying ‘Kenco Coffee served here,’ so we trudged down, me still somewhat stiff and pained. There was a girl outside emptying bins who gave us a blank look and then ignored us. I eventually found the door, which didn’t look too inviting, went in and was me by a fellow giving me another blank stare. ‘Are you doing coffees?’ I asked. Blank stare. Then, ‘Nah, we don’t open ’til twelve.’ I pointed out that the big sign outside saying coffee was being served was, in that case a tad misleading. We walked out to the accompaniment of further blank stares.

Things got better after that. We decided to brave the Blakeney Hotel. Nothing outside to say they served coffee – it’s not the kind of place that has notices outside. Far too grand. In fact it’s not the kind of place that a pair of scruffs in walking boots and wellies felt all that comfortable about going in to, but we thought we’d risk it, especially as nobody really goes to Blakeney Point if they aren’t walking boot/wellie brigade. The charming receptionist said yes, they were serving coffees, and where would we like them? We chose the magnificent ‘sun lounge’ looking over the marsh to the sea, and had a very enjoyable coffee there before heading off on our walk. Nicely thawed I felt able to tackle a short potter around on the marsh.

We did even have some sunshine! Then hubby said, quite unexpectedly, that he thought he’d treat me to lunch at the hotel! Yum! I’m sure that melon with lemon sorbet and a port syrup, followed by roast pork with all the trimmings and a rhubarb and ginger trifle would not be what the rheumy would recommend, but hey, it was a treat and it was absolutely delicious! Service was very good too on the whole, although there was some confusion regarding post lunch coffee. (Yes, I know, I drank too much coffee yesterday!) We got it in the end though, and it rounded off a lovely meal very nicely. We sat in the Sun Lounge again and watched the rain lashing down outside!

By sheer amazing luck we’d just decided we’d better wend our weary way when out came the sun again, so we didn’t even get wet walking to the car park. Did get this lovely shot of a boat against the stormy sky, with the sun catching it just right.

Boat at Blakeney

Then home past a lovely rainbow, and even got to see a barn owl drifting along in a field by the side of the road. One of my favourite birds and always a treat to see.

So a day with a very unpromising start certainly turned out to be full of promise after all. And talking of promise, hubby’s promising me one of his Hubby Special Shepherd’s Pies, so I need to go and eat it. (Although you’d think after yesterday’s lunch I wouldn’t need anything for a week!)-

Wax bath therapy

November 20, 2009 at 7:52 pm | Posted in Me, rheumatoid arthritis (RA) | 10 Comments
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I’m slightly confused because my lovely physio has suggested wax bath therapy for my hands … and referred me to an occupational therapist for it. My confusion arises from the fact that I would have thought that wax bath therapy was a physio sort of thing to do and definitely not an OT thing! I wonder if the OT will say the same when I see her? I wonder how long it will take to see her, given that it took seven months to get a physio appointment.

Anyway, if anyone has ever used a wax bath could they let me know; I’d be really interested to know if it helped at all. I did find a research paper that said it could be helpful in RA if combined with exercises but not on its own – well my hands certainly get plenty of exercise with all the typing and craft stuff, and I do some simple range of motion type exercises in the mornings too, so perhaps the wax thing will do some good.

Seem to be OK today …

November 11, 2009 at 2:35 pm | Posted in Me, rheumatoid arthritis (RA) | 15 Comments
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I was getting to the point yesterday afternoon where I was fairly convinced I was having at least a fizzle … some reasonably significant pain in the afternoon, tiredness too, and by the time I went to bed I couldn’t find a comfortable position because however I lay something hurt.

I’d had a busy, fun evening and a very unhealthy dinner! Yesterday was the night of our local sewing/quilting/crafting/whatever group and as a friend of mine who works locally but lives some way away also goes along, I asked if she wanted to come back to ours for a quick bite to eat before we went. I warned her it would only be pizza because we were in a hurry … so not a healthy start there … and she kindly contributed a chocolate putting with chocolate sauce AND cream for afters! Oh dear … but yum.

Anyway, here’s the thing … I feel much better today! So perhaps pizza and chocolate pudding is my ideal RA diet?

Erm no … before i got lots of angry comments, I’m not entirely serious! But it does show how careful you have to be not to attribute RA (or lack of it) to things without doing some serious research and testing!

Physiotherapy – what’s it all about?

November 9, 2009 at 3:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Wren posted a comment asking about physio and I thought it might get a bit long-winded for a comment answer, so I’m making a post out of it!

This was Wren’s comment – sorry Wren, just realised that this answer is going to come a bit too late for your appointment! “On another subject: How often do you see your physio (physical therapist)? What do you do at the appointments? Are there special exercises? I’m curious because I keep reading of others having PTs they go to frequently, but this is something that I’ve never done, or even had suggested by my doc. I’m seeing him on Saturday morning, and I plan to ask about it, but in the meantime, how does this work for you?”

I personally see my physio every two weeks at the moment, but that’s a timing that we decided between us and it’s changed over the months I’ve been seeing her. I started seeing her weekly when things were really bad and we’ve moved on to two weekly. We tried three-weekly but that didn’t work out – by the time I saw her after three weeks my shoulders were in agony!

There are indeed special exercises, but again they’re entirely individual to each patient. I think it’s fair to say that generally you don’t do any exercises during a flare, reduced exercises during a “fizzle” (if you have fizzles, as I do!) and you try really hard to do them when things are fine, but frequently forget! Luckily I have a very understanding physio (this is afterall the woman who recommended a year’s supply of cake, but she says I’m not allowed to post that story!!) and she appreciates that it’s hard to remember to do the exercises when things are good!

What we do at the appointments is 1) Talk through how I’ve been over the last couple of weeks since I’ve seen her 2) Decide what needs doing this time 3) Do it. Usually, what needs doing is either ultrasound on my knee(s) or ultrasound on my neck and shoulder(s) or both. Again, I’m lucky to have such a flexible and understanding physio. By the time I got to see her, I’d been seeing another physio privately for months. Long story – see here and we’d established that ultrasound works for me. Again, it’s a very personal thing. Some people find acupuncture fantastic, especially, apparently, for knees – I don’t. Some people find ultrasound completely useless – I don’t.

If there’s a different joint giving me problems we’ll talk through that and discuss if there are any exercises that might help, or whether ultrasound, TENS etc. might help.

I have a whole selection of exercises that I should do regularly for my neck, shoulders and knee, and a bunch of others to ease morning stiffness in other parts of me. The knee, neck and shoulder exercises are more to strengthen the muscles in those parts, so that they can do a better job of supporting the joints, rather than to actually do anything to the joints themselves.

The attitude of the nurse practitioners is ‘use it or lose it’, so the consensus seems to be that the more you exercise (within limits), the better. Not being the world’s most active person the only time I’m likely to overdo those limits is when I’m having a flare (where minimal exercise is fine) or if I’m doing crochet, embroidery etc. and don’t want to stop although my hands hurt!

I hope this helps explain the whole physiotherapy/physical therapy thing a bit, but it is, I stress again, only my own very personal viewpoint, and I know that every physio is different (because I’ve seen at least five over the years) and every patient is different. I reckon if you find a physio that suits you it can only help, so why not give it a try?

I’m suffering from DPS

October 9, 2009 at 5:33 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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I was given temporary hope on this post from Warm Socks at Infinity-itis (Sorry, I can’t find the infinity symbol anywhere) on methotrexate side effects. Remicade Dream commented that she always had a mental fog on MTX day. Ahah, I thought, my problems of extreme dippyness (and fatigue) this week must have been caused by my increase in methotrexate.

I felt better for a minute – hurrah, all I have to do is blame the meds.

Then I realised the horrible truth – I take my m-m-m-m-methotrexate on a M-M-M-M-Monday and I was still being just as dippy yesterday … I actually forgot to go to a client meeting! (Thankfully she’s a nice person and happens to work in the next-door office, so a quick phonecall from here and I was there in a flash.)

Hubby has now identified the true root of the matter – I’m suffering from Dippy Penguin Syndrome. Unfortunately it is, as yet, incurable.

Reframing a rubbish day in positive R.A. terms

October 5, 2009 at 9:32 pm | Posted in rheumatoid arthritis (RA) | 7 Comments
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I have had a bad day … but a good R.A. day!

Here’s how the day’s gone:

1. I had completely forgotten I had a blood test this morning, went sailing off to work, got there, realised that I should be going to the GP, turned around, and the red petrol light came on. Mad dash to fill up with petrol from my spare can before the appointment, because I KNEW that otherwise I’d forget.

Positive R.A. stuff:

  • All results from the previous test were fine – in spite of a recent increase in MTX.
  • The nurse only had to have one go at getting my blood instead of the usual Penguin is a pincushion routine.
  • I got the top of the petrol can and it didn’t hurt!

2. For some reason the red light wouldn’t go out, so I decided to go and buy some petrol. Just as I’d driven PAST work on my way to the petrol station, the petrol needle readjusted and the light went off!! Aargh. Decided to get some petrol anyway and fill up the can. Filled up the can, put some more in the car, went in and joined the queue. There was a man in front of me but I didn’t take much notice of him, as you don’t. When I got to the front the conversation went something like this:

Penguin: Pump 2 please

Assistant: Wha’?

Penguin: Number 2 … please.

Assistant: Huh?

Penguin: Pump … number … 2 … please?

Assistant: Ohmegawd, ohmegawd, ohshite, ohmegawd, stop Mr Pratt … Mr Pratt, Mr Pratt!* oh no he’s gone. Lydia, Lydia, shite, heeeeeelp.

As you may or may not have guessed, the aforementioned Mr Pratt had told her that he was on pump 2 and she hadn’t checked. It was obviously not deliberate as he had an account with them so it can be changed on that, but it caused havoc as far as me paying went, and added about ten minutes to my already delayed start at work.

Positive R.A. stuff:

  • I worked the petrol pump and it didn’t hurt at all! (This is not usual at all for me.)
  • Standing about patiently (and then mildly irritably, and then impatiently) while the assistant sorted herself out didn’t hurt either. My feet were fine.

3. I get to work, tell ‘the boss’ what kind of morning I’ve had and firmly announce that from now on the day is GOING TO GET BETTER! I am determined that this will be so. I am thinking positively. NOTHING ELSE is going to go wrong.

Then, at about 10:33 I realise I’m supposed to be in the cafe down the road meeting a friend for coffee …at 10:30. Aaaaaaaaaaaargh. I tell the lass that works for me (a.k.a. the boss) that if my friend phones, say I’m on my way (she’s a good lass, she could have worked this out for herself, but I’m panicking at this stage), throw my coat on and run (well, jog … well OK, walk fairly fast) down the road.

I’ve only gone a couple of hundred yards when a horrible realisation dawns. I phone the boss and ask her to check my calendar. Sure enough it’s NEXT Monday I’m meeting my friend for coffee. Another few minutes wasted out of a busy day!

Positive R.A. stuff:

  • Racing down the road and my knee didn’t even twinge!

4. Had to take middle-sized cat to the v-e-t this evening. Hubby rang at about 4:30 to say there’s no way he’d be home in time. ‘That’s fine,’ says I, ‘I thought you wouldn’t be.’ I wondered why he was sounding so bothered about it. Then I got home, put MS cat in the box, picked it up and thought, ‘AH! That’s why hubby’s worried.’ I’d forgotten that MSC weights a tonne (approx.)

Positive R.A. stuff:

  • OK … it hurt, I can’t deny it … but it didn’t hurt anything LIKE as much as it has done in the past!

So hurrah – what a great day – what a lot of signs that the MTX might be doing its job properly at last!

* Names have been changed to protect the idiot.

NICE refuses yet another drug for R.A.

October 2, 2009 at 5:36 pm | Posted in Me, rheumatoid arthritis (RA) | 9 Comments
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NICE have rejected yet another R.A. drug – this time for ‘moderate to severe R.A.’ It’s RoActemra (tocilizumab), known as Actemra in the U.S. apparently.

OK, so right now this isn’t a huge personal concern for me – apart from the ‘scrofulous pustule’ and other minor unpleasant side effects, the methotrexate is doing its job; but it’s a huge concern for R.A. patients in the U.K. in general, and potentially also for me personally in the future.

Here’s a link to an article about it, as there’s no point in me saying everything that’s already been said … and that I’ve already said about other drugs on this blog! In brief, and I quote: “the Committee has concluded that, at an approximate cost of £9,295 a year for a patient weighing approximately 70 kg, the therapy is just too expensive for use on the NHS and would not represent a cost-effective use of resources.”

I’d better start losing weight now, as if I ever need anti-TNFs in future NICE will probably decide it’s too expensive to fund overweight patients, as underweight patients need less drug! Well I suppose if NICE are inadvertently making me lose weight, that’s one positive benefit of them!

Barcelona Photo Diary

September 27, 2009 at 10:46 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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Terry and Marilyn on the first night.

Terry and her mum, Marilyn, about to consume a late supper. The three of us all arrived together from Stanstead, and got to the hotel about 10.15 p.m. on Sunday night, tired and more than a little peckish, only to find the buffet that had been organised for our group had all been cleared away! So ...we got to choose what we liked from the a la carte menu instead!

Just one corner of my room!

Just one corner of my room at Hotel 1898! There was also room for a desk, wardrobe, table and chair for relaxing, and of course a nice big en suite

The focus group

The focus group, where we all hear each other's stories. The simultaneous translators were phenomenal - I don't know how they do it!

Ventilation chimneys on Palais GualThe rather austere exterior to Gaudi's Palais Guell - alas, the queues were too long so I didn't visit the inside.

Plenty of time to explore the nearby bits of Barcelona between groups! These (left) are ventilation chimney covers on Palais Gual, designed by Barcelona's most famous 'son' (although he wasn't born there), Anton Gaudi. Right is the rather austere exterior to Gaudi's Palais Guell - alas, the queues were too long so I didn't visit the inside.

I took over TWO HUNDRED photos of Barcelona, but obviously I can’t put them all up here, so you’ll just have to take my word for it – it was fabulous!

Penguin (left, with neck brace), sitting with Mary and Marie-Therese from Malta and Rosa from Spain2009 09 21 Barcelona 167_small

From the left: Penguin (left, with neck brace), sitting with Mary and Marie-Therese from Malta and Rosa from Spain. On the right: the group learns how to think in soundbites. The two fantastic translators are standing at the back.

Casa Batllo, famous for being made entirely out of curves - not a straight line in sight. (Gaudi again, of course.) 2009 09 21 Barcelona 193

In the afternoon I visited Casa Batllo, famous for being made entirely out of curves - not a straight line in sight. (Gaudi again, of course.)

I haven’t got any pictures of me ‘speaking to camera’ on Tuesday morning – this may well be a good thing! It will be interesting to see if they use any of my soundbites on the My Day for RA site … when they get round to updating it. Then I had the rest of the day entirely free until the evening event. Here’s just a couple more pictures to whet your appetite if you’re thinking of visiting!

Left: A square of Los Ramblas. Right: I'm embarassed to say I forget where - there are so many beautiful places!2009 09 22 Barcelona 066

Left: A square of Los Ramblas. Right: I'm embarrassed to say I forget where - there are so many beautiful places!

And so to the big event … not my sort of thing really, and it did go ON, but quite fun all in all!

Javier Bovea Ahis seranades Samantha - he did this a LOT! He had an eye for the beautiful ladies!

Javier Bovea Ahis seranades Samantha - he did this a LOT! He had an eye for the beautiful ladies!

2009 09 22 Barcelona 105_edited-1

Our favorite opera singer dances with Mary (I think her name was Mary) who has evidently now recovered from having her head bashed by a paparazzi camera ...

Terry (right) with her new best friend, Jane Seymour (taking a break from the Opera and Spanish conversation on her table, behind us)

Terry (right) with her new best friend, Jane Seymour (taking a break from the Opera and Spanish conversation on her table, behind us)

And so to bed. Luckily I don’t have any photos of me rowing with the airport officials the next day; sadly I also don’t have any photos of the fabulous flight over the Pyrenees, or the glorious sunset that greeted me when I finally arrived home in Norfolk … or the lovely hubby that also greeted me … so … that’s all folks!

Hospital appointment lost …

August 11, 2009 at 9:01 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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So, as I said in my last post, I got home from a cracking weekend away to find a letter telling me that due to my health professional being on annual leave, my hospital appointment for September 2009 was being postponed … for six months. Now it won’t surprise those of you who know me that I slightly lost my rag … it’s probably sitting somewhere with my marbles.

On Monday I phoned the hospital – the receptionist was suitably puzzled, perhaps even astonished, at the amount of delay, buy all she could do was put me through to the nurse practitioners’ secretary, and all she could do was add me to the cancellation list for September. ‘If you get to the top of the list, we’ll let you know and give you an appointment.’ She didn’t sound like she thought there was much chance of that.

So I asked her who I should make an official complaint to. She told me to contact the Patient Liaison Service and she put me through. This actually was NOT how you make an official complaint, but it was nevertheless a wise decision on her part as when I eventually spoke to the PaLS lady she was excellent – and sympathetic, unlike the secretary who had probably worked as a doctor’s receptionist before getting this job, and so I ended up NOT putting in a complaint…

But before I spoke to the excellent PaLS lady, I had to do the usual leaving of a message on the answerphone, waiting for a response, not getting a response, writing a stinking complaint letter and sending it off.

In my stinking letter I explained that not only was I having this appointment canceled, but in fact when I looked back at my diary it seemed that I had actually only seen the n.p., in April 2008. This is someone I am supposed to see every six months, interspersed with six-monthly consultant appointments so that I see a ‘rheumatology health professional’ every three months.

So … if I didn’t get to see her until March 2010, that would be a gap of just under two years in what is supposed to be a six-monthly appointment schedule!

I also pointed out that NICE guidelines state that a patient whose RA is not under control should be seen monthly. I didn’t hold out much hope for that argument, and I was right – ‘Well they are only guidelines, and we have to do what we can, but …’ but hey, when NICE are on your side you’ve got make the most of it! It doesn’t happen often!

Aaaaaanyway … the rather lovely PaLS lady (who turned out to be an RA patient herself) sent my letter to the RA manager, the nurse practitioner etc. and got a response back for me within 48 hours, and phoned me for a chat. She agreed with me that saying ‘your health professional is on annual leave’ when in fact what had happened was that yes, she was on annual leave but they’d also had one nurse leave suddenly and another drastically reduce her hours (and that from a group that was only four-strong in the first place), did nothing to endear them to their patients.

She explained that if I had a serious problem I could contact the helpline. I explained (again – it was in my letter) that actually things were pretty good at the moment, BUT the registrar I saw in June said that I should see someone in three months (i.e. September) to see if I needed to up my methotrexate if it was working. Now I wouldn’t see anyone until December (my consultant appointment) and I didn’t think that was good enough. Then she said that she thought the nurse p. could probably actually sort that out over the phone and up the MTX after talking to me if she thought that was the right thing to do.

Now that would suit me just fine – getting it all sorted over the phone without having to drag myself into Norwich and waste an afternoon … so I said that was really useful to know and that I would therefore not be making an official complaint at this stage … and then we had a nice, friendly chat about RA and the local support group etc.

So it all ended very amicably and pleasantly and I went off a much happier penguin … and prepared to give ‘em hell at the beginning of September when they told me that actually they couldn’t do it over the phone. Cynical? Moi?

But wait … is that the mobile I hear ringing … Yes … it’s the nurse practitioner’s secretary …

See the next thrilling installment for what happened next …

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