Update – RA, Cholesterol, Cats, Life etc.

August 10, 2013 at 10:15 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Well, I’ve been very remiss posting lately, I must say … so prepare for a very long and rambling post – perhaps I’ll put headings on so you can skip to the bits that you might find interesting! A combination of being very busy and yo-yo health – but fortunately, mostly busyness.

Fortunately/unfortunately

Anyone remember the game ‘fortunately, unfortunately’ where you’d take it turns to make sentences beginning with either fortunately or unfortunately, to make up a story? Well I was wondering whether to write an entire blog post like that, as my life seems to fit that pattern quite well right now – but thought it might get tedious, for you and me! Here’s an example though in case you have no idea what I mean:

Fortunately I have been doing a lot of fun things lately.

Unfortunately doing a lot of fun things is rather exhausting.

Fortunately I am, on the whole, sleeping quite well.

Unfortunately my Spanish teacher forgot I only drink decaf coffee and made me two fully ‘cafinated’ coffees last week, and I had a terrible night’s sleep (or lack of it) trying to climb down off the ceiling.

Etc. etc. 

Health

So – here we go with the update on the health front: About three weeks after my methotrexate increase in May I started to feel much better – go methotrexate! All those ‘regular’ niggly aches in my hands and feet were spirited away – I was still getting twinges and some knee pain (my knees probably being the worst affected bits of me) but no stiffness and none of that constant, nagging, draining pain. Hurrah! Unfortunately … sorry, just slipped into it there … it’s now about twelve weeks later and I’m feeling really pretty rotten. If you’re reading this then the chances are that I don’t need to describe that rotten feeling – you either know it only too well or you probably know me and I’ve moaned at you enough already – so suffice it to say I’m just not feeling good!

I’m hoping, and thinking it most likely, that it’s a temporary blip rather than that the methotrexate is ALREADY not doing the job. 

Cholesterol

On top of that I had my annual cholesterol test recently … hmm … suffice it to say I am now SERIOUSLY on a diet! :-( It’s very boring – actually that’s not really true – there’s a lot of GREAT and tasty food out there that’s fine for dieting, including much delicious fruit – but remember being a kid and having plenty of toys and games and friends, but you’re BORED and you DON’T WANT ANY OF THOSE? Well that’s how I feel right now about peipono melon and strawberries and lovely home-grown courgettes (zucchini) and all the other apparently delicious things in the fridge! I want caaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaake! But fortunately (sorry!) the weight is coming off so that’s encouraging me to avoid the cake and stick to the melon! Also I do NOT want to be on Statins at 46!!

Cats

And so to cats – it’s been absolutely ages since I mentioned my cats (or indeed my poor hubby, but he might have to wait for another post!) They are still, of course, a central part of my life (as are you hubby-dear, before you read this and complain) and in fact we may have to rename Enormous Cat as Mr. Handsome, as he has dieted (or perhaps I should say we have dieted him?) way more successfully than his penguin, so far. I should get encouragement from him – he’s ten years younger in sprightliness and joi de vivre, although (like me) he does complain loudly that he’s hungry sometimes! And Tiny Cat 2 has really come on – she’s gone from being a practically feral scardeycat to a real member of the family – she’s even been known to sit on my lap for twenty minute at a time and stay quite happily curled up next to hubby when he’s sat down beside her. (Not often – but increasingly.) 

Having fun (and occasionally working)

So … the rest of life: I had a lovely visit a few weeks ago to Bro and SIL’s new(ish) house in the Midlands – and we’ve visited some other friends and had some friends visit us; Hubby and I have been doing quite a bit of wildlife surveying which is fun; I’ve been doing a lot of crochet, trying to get something ready for a competition but I fear it’s NOT going to be close to ready  – but on the bright side I did get third prize in our local show for my crocheted St. Edwards Crown last month, so that was nice. I have also been trying out ‘Canadian smocking’ which is fun. Just small samples so far, practising on an old gingham curtain, because that way I don’t have to mark out squares on the fabric! I have a cunning plan for a clutch bag based on this technique – but no hurry … and the Spanish is coming on nicely – although to be honest I can understand my Spanish teacher fairly well but plonk me down in Barcelona and ask me to translate and I’m sure I still couldn’t understand a word! Still – getting better! And in amongst all this fun, fun, fun – work has, thank goodness, picked up lately, so we’re busy there too. No wonder I’m tired! 

Phew – sorry that was so rambly – I’m off for a lie down now … although Mr Handsome is trying to persuade me to feed him instead.

The joys (or otherwise) of spam comments

October 7, 2009 at 8:46 pm | Posted in rheumatoid arthritis (RA) | 11 Comments
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I’ve now been privileged to receive my first two Spanish spam comments, after posting about Barcelona so much recently! Multilingual spam – cool.

On a serious note though, I’d personally recommend that everyone moderates all their comments on blogs because spamming via comments is a popular pastime. Why? Because the spammer gets a link to their site at the same time, and the more links from outside sites to a website, the higher it’s ranked on Googe and other search engines. It’s known as black hat SEO and it’s not funny and it’s not clever.

Some spam is more targetted – for instance a certain mattress is being subtly and perhaps unethically advertised on various R.A. blogs at the moment. Odd that I had an identical comment saying how great the mattress was to one on one of the blogs I follow, and yet purporting to be a different person posting. These guys are taking it to a new level though. Instead of posting a general comment like ‘great blog man. Cool info! So glad I found it’ which can apply to any blog in the known universe, the mattress folk are responding to actual blog posts – must be time consuming but probably pays better dividends as they look like ‘real posts from real people’.

Interestingly I recent saw some information that suggested this was now illegal in America – you have to actually state a material link to the thing being advertised, if one exists. It may simply be that you were sent a free one to review – you still have to make it clear that you received it for free.

So … watch out mattress folk – gut subtler, get out or get your fingers burned.

On the bright side – I kinda get a kick out of spotting them and going ha ha, didn’t fool me … this time!

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!

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