December 27, 2009 at 11:16 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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Happy Christmas, belated Happy Hanukkah and Happy New Year everybody! Felis navidad e prospero ano nuevo.

I’ve had a lovely break so far, and some really ACE presents! One of my many New Year’s Resolutions is going to be to make more of an effort to give people things not on their Amazon wishlists as well as things that are, because although I’m always delighted to get anything off my wishlist (and I got some cracking presents off my wish list this year – an excellent mix of fiction, non-fiction and CDs), two of the best presents weren’t on there. Also I suspect the best present I gave was one that wasn’t on a wishlist either – a “Dr Who Scarf” crocheted for sister-in-law-to-be (aka Mrs Mooseface). It’s certainly the most appreciated!

My two ACE non-wish-list prezzies were an Encyclopedia of Machine Embroidery, which I’m actually reading cover to cover rather than using as reference book, it’s so good, and a little extra prezzie from Hubby (who got me a Spanish course for my main prezzie) – an NSD powerball. This is basically a gyroscope inside a plastic ball, but it’s also hopefully a muscle strengthening aid and definitely bloomin good fun! It took as most of Christmas afternoon to get it working at all as you have to start it off by winding a sort of shoelace around it and then swizzling it around until the energy builds up, and we just didn’t have the knack, but once Hubby worked it out and then explained it to me in words of one syllable, and with demonstrations to boot, we’ve really been enjoying using it.

If you want to see a demo they have a website here. I have to say though, I suspect most people with rheumatoid arthritis would be unable to grip the thing, either at all or at least once the energy has built up in the gyroscope, as it starts to feel like it wants to take off and take you with it. That’s a very strange sensation but definitely fun. I have to keep changing hands with it or my hands get too sore, but I am finding that I can hold it for longer and longer each time I use it – and I’ve only been using it for 48 hours, so it seems quite promising!

Perhaps I’ll take it into my physio when I see her later in the week to see what she thinks of it – but I’m scared she’ll say, ‘Good grief – you shouldn’t be using that. Stop it immediately!’ and it’s too much fun for that!


I wish I could live in the dream world my consultant inhabits

December 27, 2009 at 11:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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It’s official – I had a flare at the end of October/early November … and more, I suspect. No kidding. I think I knew that, but this time it actually showed in the bloods! That’s a first for me!! I’ll give the consultant his due though – he was as amazed as I was that the bloods actually matched with how I’d felt, so he does at least appreciate that one can feel totally lousy and have no indication in the blood tests whatsoever, and vice versa.

Anyway, we agreed that things were going pretty well at the moment and that it didn’t seem sensible to go on increasing the MTX willy-nilly if things were OK. I explained that I knew I was much, much better than last time I’d seen him (which I think was well over a year ago, as I’ve since seen a registrar and a nurse but not the man himself), but that they certainly weren’t perfect, and for the first time he admitted that I probably wasn’t going to achieve perfect … I’d kinda figured that out, but still a slight blow to hear him say it!

He then cheerily added that never mind, compared to what he usually saw I really wasn’t bad at all. He has no idea just how bloody irritating this comment is – he’s said it before. I think last time I was too dazed and generally fed up to actually respond, but this time I was properly prepared and I pointed out that I wasn’t comparing myself with his other patients – I was comparing myself to myself before this whole R.A. business started, and that when I do that I don’t see my current self in a terribly favourable light. The nurse who sits in with him (as a chaperon and to make sure he remembers to fill all his forms in!) was nodding sympathetically and understandingly behind his back. I got the feeling she’d heard this comment from him before and had thought exactly what I was now saying. Anyway, he sort of blinked a bit, looked rather surprised at being answered back to and mumbled something that was vaguely conciliatory … I think.

Then he bid me to enter his dream world by saying, “If the MTX doesn’t keep things under control, if you have another flare, we’ll put you on these terribly expensive new drugs called biologics or anti-TNFs.” (He does tend to forget I have a brain.)

I snorted – very rude, but it just sort of happened! I said something like, “Have to be one hell of a flare for the NHS to let me on to those!”

“Oh no,” says he, “just an ordinary sort of flare.”

Well, that’s certainly not the impression I’ve been given by the NRAS magazine, the people on the NRAS forum (other R.A. sufferers, generally in a much worse state than me, who have failed the ‘DAS test’ for anti-TNFs), the press, people I met in Barcelona, the nurse practitioner, the GP, the practice nurse … just about everyone else really. Since this is the man that told me I should see him in three months last time, when it was totally impossible for anyone to get an appointment closer than six months, and the man who told me that all I needed to do if I had a flare was phone and I’d get straight through to someone on the helpline (not true as it’s usually unmanned and then they don’t call you back) I don’t feel too filled with faith about the biologics comment either! I dare say though that his “ordinary sort of flare” would be the ordinary sort of flare that his other patients have, not my little fizzle!

Well, hopefully the MTX will now do its job properly and I won’t need to ever find out whether he’s living in a dream world or I’m just being unnecessarily pessimistic about my prospects for biologics!

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