I’ve got an ‘interesting’ side effect to MTX. Lucky me!

September 29, 2009 at 9:15 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments

I’ve got a rather unusual side effect from the methotrexate – and I suggest you don’t read any further if you’re eating your dinner (or breakfast, or mid-morning snack, or whatever!)

The thing about being immunosuppressed is that your immune system is suppressed all round, so the standard queries at the monthly blood test, ‘Have you had a sore throat? Any mouth ulcers? chest infection? No? Good’ doesn’t cover all the possibilities by any means!

So my advice to you if you’re on MTX would be to see the doctor with even a piffling spot or something if the obvious remedies such as TCP are not doing the trick. This is a classic example of do as I say and not as I do – if I’d gone to the doctor with this lump on my arm on say Friday, it having started on Tuesday, I’d probably be in a lot less pain by now! Instead I decided I’d see how it did over the weekend. Well, it grew and it grew until by this morning (there’s no point going to the doc’s on Monday – everyone’s waited to see how it goes over the weekend and the queues go round the block) I felt there was more lump than penguin. The lump itself is over an inch in diameter and it sticks out quite some way, and what’s worse – the redness has now traveled half way down the top part of my arm and it HURTS LIKE HELL! OK, it’s not as bad as having a really painful joint, and it proves the methotrexate is doing its job and I’m glad about that, but it still hurts like hell.

I saw the GP nurse practitioner this morning, and jolly good she was too, once we’d established that asking about a history of breast cancer in the family was probably irrelevant to a lump on the arm. (I can see where she was coming from – she hadn’t looked at it yet and if it had been right in the arm pit then I might have been referring to that sort of lump.) One look told her what it had already told me – that it’s an infected sebaceous cyst or hair follicle. Until the infection has gone down it’s impossible to tell which, but if it’s the former then I will probably need to have it surgically removed. (Luverly!)

She was initially puzzled as to why it was there because they don’t tend to get infected and if they do it’s usually because you shave your arm pits (I don’t) or you have poor hygiene (I don’t!) Then of course she realised I was on the MTX and that explained everything!

I’m now on a whacking dose of oral antibiotics and the message is, loud and clear, don’t wait – go and see the GP! Next time I shall practice what I preach!

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!

5HTP update – The Dream of the Crazy Penguin

September 25, 2009 at 10:19 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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I have been taking 5HTP for my fibromyalgia now for several weeks, and my overall verdict is that IT WORKS! My sleep pattern has improved enormously … although Spain did cause a temporary blip! I now get to sleep far more quickly and easily than ever before, and generally if (when) I wake up in the night, I find it easier to get back to sleep than I used to.

I must also be getting better quality sleep because my dreams are SO much less interesting on the whole! I think this is because I’m having less dreams and more deep sleep.

Just to give you an idea of the difference in dreams, here’s a pre-5HTP typical dream:

Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP panics, starts to swerve … but it’s OK, suddenly the car is flying. Weee … PP still doesn’t know where she’s going but sails happily over the rest of the cars to a beautiful tropical island. Suddenly hubby is in the car too. They land and … do what penguins and their hubbies like best for a while, before realising the cats are missing. Then a huge panicked chase and attempt at cat herding ensues with much yelling and running around. (At this point … if not before, I’m usually tossing and turning in the bed, throwing the covers around and shouting my head off.)

Post 5HTP dream:

Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP pulls over and wakes hubby up and gets him to look at a map. They work out where they’re going, hubby takes over the driving and PP admires the view. The end.

It’s a bit boring but so much more restful – my fatigue problems are definitely reduced these days. I can cope with a few boring dreams if I feel this much better for it!

Hasta luego Barcelona – I hope!

September 24, 2009 at 8:14 pm | Posted in Barcelona, Me, rheumatoid arthritis (RA) | 6 Comments
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I sent a postcard to hubby on my first day in Barcelona. It said, ‘Start learning Spanish – we’re coming back!’ It’s a truly beautiful city – especially if you love Art Deco and Art Nouveau as I do; the people are friendly, the food is amazing and the hotel they put us up in … well, that’s one bit I probably won’t go back to. No, don’t get me wrong – it was estupendo, fantastico, fenominal (I’m sure translation is not necessary!) … but so was the price. Not an issue for me since I wasn’t paying, but I think if I go back to visit with hubby we’ll maybe just about afford a drink on the roof terrace there for old time’s sake. (Might have to share the drink!) If you have money to burn then Hotel 1898 is probably THE place to stay in Barcelona.

So, was it useful from an R.A. point of view … well, I met some great people, from UK, Spain, Malta, Greece, Israel, Argentina, Romania and Sweden, all R.A. ‘victims’ and all chosen because their attitude was precisely the opposite of ‘victim’ or ‘sufferer’ – these were all people who were getting on with their lives in really positive ways, often doing a lot to help others on the way, and the event was to celebrate their achievements. Made me feel a bit of a fraud, meeting some of them – quite humbling. Terry, for instance, was diagnosed at 16 (ouch) and has put up with SEVERE R.A. for 20 years now – and she raises significant amounts of money for NRAS and still has time to hone her wicked sense of humour on unsuspecting companions (i.e. me). I shall get my own back photographically later on. Theresa from Sweden was diagnosed at eight and … wait for it, wait for it … went on to become a professional dancer!

‘But what did you have to DO?’ I hear you cry – ‘Surely you had to sing for your supper – there’s no such thing as a free lunch, let alone a free three night stay in a fabulous hotel, full board, heavenly food, comfy beds, friendly staff …’ Well … I think we spent a total of about 1.5 hours in groups and interviews on Monday and Tuesday and the rest was free time! There was what they called a focus group to start off with, divided into three groups as there were 28 ‘patients’ altogether, some with carers in tow, so too large for one group. It wasn’t really a focus group – more of an ice breaker. Everyone told their stories briefly and then we all went off for a lovely lunch. In the afternoon there was a short chat about how to deal with the press, how to control a press interview; how to think in soundbites really. (Not the way she put it, and she might be insulted to hear me describe it like that, but that’s how it came across to me!) Then on Tuesday morning at 9.30 I did my short piece to camera and then had the rest of the day free until the celebratory dinner.

Apart from the absolutely abysmal travel arrangements, my only quibble would be the arrangement of this. It started at 5.30 with drinks and canapes (standing up) for half an hour, followed by paparazzi hell (a.k.a. a photo opportunity for the press with Jane Seymour, who presented the certificates) with all of us in a group photo. Then a video telling the story of Samantha, one of the participants, and one of the many amazing people there. One young lady (carer for one of the Greek ladies) got clobbered on the head with an enormous telephoto lens, but other than that it went O.K. Then we wandered into the dinner room and sat down to a video telling the story of one of the participants, Samantha, just one of the extraordinary people there, a speech from Jane Seymour, a speech from a Spanish consultant (a whole story in itself, but I’m not going to go into that now!) and a speech from a patient group representative who bravely did her talk in English (which she didn’t really speak.) It was a very good try, but really, as we had simultaneous translation, it would have been better to do it more naturally in Spanish, rather than reading the PowerPoint presentation word for word in English! Thumbs up to her for trying though – a brave effort.

THEN we had to all go and get our certificates individually from Jane, who also gave us a signed copy of her new book. Seems like a nice lass – I’m jealous though as she’s about fifteen years older than me and still looks like a ‘lass’!

Then the OTHER guest of honor, Javier Bovea Ahis, an R.A. ‘sufferer’ as well, who had had to give up his career in the police force due to his R.A. and retrained as, of all things, an opera singer, going on to win various Spanish talent shows and make quite a name for himself, sang. And boy did he sing – he had a terrific voice, but the room just wasn’t big enough for him. He also had an eye for the beautiful ladies, whom he serenaded repeatedly later in the evening, and even danced with in one instance. I was grateful not to be one of them as I think their ears were still ringing the following morning.

Then ANOTHER group photo and then … FINALLY they FED us. This was a bit of a cultural issue; it must have been about 8.15 by this point – the Brits were STARVING, the Spanish were probably just about considering the possibility of getting a bit peckish!

My quibble isn’t with the late food – more with the fact that the event started at 5.30 and we finally finished the meal at 11.00 and that’s a LONG HAUL for anyone with rheumatoid arthritis I reckon! Some stayed up even later than that … you could spot the bleary eyes at breakfast the next morning!

So – was it worth it? For me, si! I had what amounted to a fabulous short break in Barcelona. For Wyeth Pharmaceuticals, who funded it? I really have no idea. The idea is to put together a website to encourage people to take time out to really learn about their condition and learn to accept it and live positively with it. (My Day for R.A.) That’s what we were all there for and that’s what the piece to camera was for … but as yet if you go to the site you’ll still find application forms for the event that I’ve just been to, so when they’ll get it updated, who knows. Hopefully in time for World Arthritis Day on October 12th!

Photos of the event, including the serenading opera singer and Terry with her new best mate Jane, are here!

Trying to remember to pace myself!

September 16, 2009 at 9:16 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Feeling sooooo much better after two excellent physio sessions that I went shopping straight after the last one, came home, unpacked it all and attacked my much neglected embroidery, in the meantime sorting out bits and bobs relating to Spain (not least of which is that I’ve finally got the itinerary, but due to a small mix-up, still not got my e-ticket). I am now feeling somewhat shattered and trying to persuade myself that the best thing to do is STOP. Fortunately I won’t take much persuading as I know if I keep going I’ll just put myself into another flare just in time for my little trip. So … night night everybody …

Bowled over by great physio service!

September 15, 2009 at 10:39 am | Posted in rheumatoid arthritis (RA) | 2 Comments
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Not literally of course as being literally bowled over by physio would probably defeat the object really!

I haven’t got round to whinging about it on here yet, but from the moment I woke up on the first day of my holiday I’ve been going through a flare (definitely a flare rather than a fizzle this time!) in my neck and shoulders. Last Tuesday morning I could barely move until the stiffness wore off and I had to use my TENS machine pretty much all day (which may explain why Kate-Kate the Sat Nav started speaking in tongues (mainly Polish) and hasn’t worked properly since, but that’s another story). It seemed to get a bit better through the holiday (oh, the power of relaxation), but on Sunday morning I woke up with a corker of a migraine, which I’m sure is caused by the neck and shoulder pain, as the two do tend to go together with me. I spent pretty much all Sunday in bed (or on sofa, having come down because I felt slightly better and then found I felt too ill to go back up to bed again), and thought I’d kicked it on Monday, only to have it come bounding back at lunch time. (Migraines do tend to linger, even when you’ve got rid of the main agonising headache part.)

So … this morning, in a fit of wild optimism (especially wild as I do actually have a booked appointment tomorrow), I phoned the physio department and asked if by any chance my physio had a cancellation or something and could see me today. ‘Can you get here for 11.30?’ said the receptionist, without even the usual grilling as to why I needed to see someone. You could have knocked me down with a feather!

Well for all my moans about the NHS, there’s little pockets that get it really, really right, and my physio department (and indeed my physio) is definitely one of them! In fact she recommended a year’s supply of cake the other day … what a wonderful woman she is. (But that’s another story too!)

Autumn is doing a very good winter impression this morning

September 15, 2009 at 9:09 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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What happened to those gorgeous sunny days we had last week – well, I’m glad I had the right week to go on holiday, anyway. I can hardly believe I was sitting on Brighton beach eating ice cream last week, whereas this morning I had to put the car’s heating on coming into work as my fingers nearly froze to the steering wheel.

Which reminds me – a friend mentioned this morning that she had a rather crunchy ice cream yesterday on Brancaster beach as the sand was blowing into it! That made me realise what a great advantage Brighton’s stony beach is. May not be quite as comfortable to sit on, but the wind REALLY has to blow before you get stones in your ice cream!

Anyway, back to frozen fingers … OK, I exaggerate – it wasn’t actually even frosty, but the cold really got into my joints and it felt like my fingers had locked into place. Oh joy – that’s what I’ve got to look forward to this winter. Looking on the bright side … hmm, now where did I put that bright side? It must be here somewhere … oh yes, I found one – I get a few days respite next week if the whole Barcelona thing comes off – they’re still getting 25 degrees and sunshine as far as I know!

Rheumatoid Arthritis on Women’s Hour

September 14, 2009 at 9:12 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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There was a little feature about R.A. on Women’s Hour on radio 4 a couple of weeks ago. Nothing Earth shatteringly new for those in the know, but quite interesting. It was talking about trialling the use of rituximab early on in the disease, instead of doing as NICE now recommend and not letting people have it until they’ve failed three or four other biologics. It’s here.

One bit that caught my ear was this, a quote from Dr John Isaacs at Newcastle: “One thing that all rheumatologists are pleased about is that NICE are confirming what we’ve been saying for years, which is that we need to be more aggressive with this disease. So previously patients like Wendy would be seen perhaps once every three months, or once every six months, and now we’re being told that certainly in the early stages of the disease we need to see patients every month, and if treatments aren’t working then we need to be escalating treatments, changing therapies …”

Well I’m not sure how pleased the Norfolk and Norwich are about the new guidelines. “We can’t possibly manage to see people every three months. We’ll see you every six months if you’re lucky.”

These are the sorts of things a positive thinking, celebratory penguin will be trying not to say in Spain next week!

Pollyanna Penguin’s (hopefully) Big Adventure

September 14, 2009 at 7:49 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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I’ve been invited to an (almost) all expenses paid trip to Barcelona next week for an event about managing R.A.! I just knew there had to be some perks to having this dratted disease! Always look on the bright side, I say – and this time the bright side is taking me to (hopefully) bright and sunny Spain.

I had an email sent through the National Rheumatoid Arthritis Society in mid-August saying that this event, My Day for R.A. (www.mydayforra.com), was taking place and that if you wanted to be involved you had to fill in a form telling your inspirational/positive story about living with R.A. They apologised for the short notice but they’d only just been told about it, about three days before the deadline of 14 August.

Well, work was fairly quiet so I thought what the heck – nothing ventured etc. and filled it in.

Fast forward three weeks to Penguin on holiday in sunny Sussex – in fact sitting on Brighton beach soaking up the sun and lapping up an ice cream – when the phone goes. It’s my colleague saying, ‘Can you phone this woman urgently – something to do with an R.A. event or something …’ So I did, and it was a nice young lady wondering if I’d got the email inviting me to the event in Spain … which of course I hadn’t.

Short notice seems to be a feature of the whole event – they said they’d let all shortlisted people know by end August, then sent round an email that said there would be a delay due to the large number of responses. They let me know on 10 September and I’m (hopefully) flying out on Sunday 20 September … but I have yet to receive any flight details. I’ve got to get myself to the airport, after which they take over and arrange everything … hopefully! They pay for the travel to the airport too, just ask you to arrange it … which is fine, provided they tell me sharpish which airport I’ll actually be flying from and when!

It should be a really interesting event – people from all over Europe discussing their ways of dealing with R.A., and culminating in a celebratory dinner featuring Jane Seymour (Dr. Quinn, Medicine Woman, bond girl in Live and Let Die, and, by astonishing coincidence, on the cover of the book I’m reading in my ‘gravatar’ photo on my home page, as Lady Blakeny in The Scarlet Pimpernel, amongst many other things). They hope it will also feature lots of journalists for some good publicity for Wyeth Pharmaceuticals who are funding it, and hopefully also to improve people’s understanding of R.A. – both those who’ve got it and those who haven’t and make those annoying comments about ‘Oh, isn’t that wear and tear on the bone’ etc. etc. They’re even providing participants with a workshop on how to deal with the media – so if nothing else, that might well have some useful learnings!

I’m really hoping that there’ll be a little bit of time to see something of Barcelona before they fly me home again on Wednesday – we shall see. Either way, I’m looking forward to it and hoping it makes a contribution to people’s understanding of rheumatoid arthritis!

I lose the local photo competition again

September 2, 2009 at 3:03 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
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Once again I entered the local photo competition this year – I’ve entered it for the previous three years, since it started, and I’ve always been shortlisted, and even won some small-scale prizes, but never won a top prize. This year I was shortlisted again, and I dithered about whether to go to the prize presentation or not … you know what these things are like; lots of standing around, which I’m not so good at these days, making inane conversation with people you don’t know and wishing them luck out loud when really you’re wanting to win yourself (not that I’m an overly competitive penguin of course), and wondering when you can go home.

On the other hand I like to support local events when I can … especially when they occur in the building where I rent an office. They notice if I don’t turn up!

I asked hubby’s opinion and he said, ‘Oh go along and practise losing gracefully again.’ I went along and practised losing gracefully again. Trouble was that there was nowhere to sit. Well, that’s not quite true – there were about forty people and about two chairs. I suppose I should have gone in with my stick and a conspicuous limp in order to look like someone who needed to sit down … but the organisers might notice that the limp only lasted for one evening, since they see me every day!

I couldn’t have asked the very frail looking elderly gentleman to give up his chair.I COULD have just thrown a woman’s handbag off the other chair and sat on it, while gently nudged away a man who was leaning on the back of it, but I decided to sit it out … or rather stand it out.

Well, I lost gracefully … well, fairly gracefully … well, apparently gracefully even though I was sulking inside, but I came away feeling extremely chuffed nonetheless. Why? Because I remembered that last year I couldn’t attend the ceremony at all because I KNEW I couldn’t stand up for even ten minutes or so, and I KNEW I would feel wretched the next day if I went. Another little proof of how much better I am this year.

I was a tad stiff this morning, whether from standing or sulks I’m not sure, but nothing serious, and now it’s mid-afternoon and I’m fine. I’ve even revisited the exhibition of photos and grudgingly admitted that the winning picture is rather good!

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