Hospital appointment – only 7 months late

November 20, 2015 at 9:27 am | Posted in rheumatoid arthritis, rheumatoid arthritis (RA) | 13 Comments
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I’ve just had my April hospital appointment – well, it was supposed to be in April – then they moved it to June .. then they moved it to August … then they moved it to September … then they moved it to November… but this time it didn’t get cancelled. Right, I thought, I’ve seen no one at the rheumy department in 13 months, I’m going to make a LIST of things that I need to ask about, ’cause my memory’s shot. I know doctors hate lists but when you have to wait 13 months for an appointment you don’t want to forget anything, right? Right! Shame I forgot that I’d made the list then, and consequently forgot to ask about the dry mouth, although I think I covered everything else… except memory problems of course. I don’t think a rheumy clinic is going to be that interested in my forgetfulness anyway!

Everything else was more pain and stiffness in the hands and feet than previously, two nasty flares in my knees over the past year and a lump on my finger.

For the first two, my methotrexate has gone up to 20mg from 17.5mg. The nice boy (sorry, young man – I’m getting old, all the registrars look like children to me) was slightly horrified that I started off eight years ago on 5mg (or possibly 7.5mg) as they’re now much more aggressive and he said they’d never start anyone on less than 15mg so really 20mg is nothing. He also said if stomach upsets were a problem them can move me over to a self-injecting pen. I wasn’t too keen on that idea – I’ve only had two or three stomach upsets over the year that MIGHT have related to MTX and it’s possible that none of them did – I have a dodgy tummy anyway!

For the lump on the finger, he said since it was on my left middle finger and I’m left-handed it was probably just where I rested a pen. I said, ‘Who writes these days?! I almost never hold a pen! I type everything,’ to which he laughed, agreed and basically said, ‘Dunno’. It’s not painful and it’s not growing alarmingly so ‘dunno’ is fine for the moment!

The ridiculousness of the DAS score was brought home to me yet again. As the nice boy put it, ‘You might as well be amputated below the knee as far as that’s concerned’ and one of my main problems is feet! Daft! It also included a rating of how has the RA been THIS WEEK. Who gives a monkeys about this week – I haven’t seen anyway for 13 MONTHS! He took that on board too, bless him, and although I scored ‘low disease activity’ with four sore joints and pretty good thank you for this week, he accepted that my RA wasn’t under control if I’d had two bad flares this year; hence the MTX increase.

He also said if the appointments started slipping again, I should phone reception and point it out and they’d stop it happening – my faith in reception, on a score from 1 to 10 – zero. Not that I really think it’s their fault – they’re just the front line when it keeps happening and I phone up and say ‘Oy’ and they say, ‘Not our fault,’ which it’s not!

Anyway, I’ve got a nurse practitioner appointment in February – let’s see how much that gets moved – not that I need it in February – May would be more sensible, but I’m hesitant to cancel!!

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  1. Just a thought from someone in the same line of work, but could the lump on your finger be a ganglion like what I had a few years back? I put it down to repetitive use of a mouse, possibly the mouse wheel. That might be one for the GP rather than the baby registrar, assuming your GP is any good.

  2. Baby register? Was that an autocorrect gone wrong?! Actually, for reasons best known to WordPress this post should have been published a week ago but wasn’t, and now the lump’s going own of its own accord so not too worried, but if it comes back I might take it to the GP. πŸ™‚

  3. No, just baby as in a comment on how young he looked!

  4. DOH! This is the disadvantage of finding the thing hadn’t posted a week after I wrote it – I’d forgotten about him being 11 … and also the problem of not having my new glasses yet (picking up tomorrow) so that I misread ‘registrar’ as register!! Oh dear! It’s been that kind of day. I really had no idea where a baby register came in! πŸ™‚

  5. Oh, dear, Polly. Well, hopefully the increased MTX will help and I’m glad the bump on the finger is resolving itself. As many challenges as the US healthcare has, I’m glad that I don’t have to deal with the health system you do. I’m very spoiled about being able to get in to be seen when I need/want. Love your list, though. I do the same thing. I don’t know whether my doctors love or hate it, but they’ve at least come to expect it from me. πŸ™‚

  6. LOL – it seems the grass is always browner with us! I used to think ‘I wish we had the American healthcare system’ until I started reading your and Wren’s blogs – now I think perhaps I should support ours a bit more as at least we don’t have all the hassles you do with switching when you move jobs etc. and also of course if you aren’t able to work! As you know, the NHS drives me absolutely NUTS but at least it’s equally not there for everyone.

    So cross about the list – it was even in my handbag, which was on my lap in the consultation. DOH! So what can I do next time to remember to get the darned thing out, I wonder?

    Looking forward to hearing your updates – but glad the Joint Decisions summit was good! πŸ™‚

  7. Hi, Penguin!
    Wow–that’s a long, long time to have to wait for a rheumatology appointment! I’m glad the child doctor believed you and took action in regards to your increased flares and pain, and I hope the increased MTX dose does the trick. How frustrating to have had that appointment canceled so many times, though!
    Here’s hoping your RD settles down nicely and stays there through the holidays and winter weather. And it sounds like you ought to treasure that Feb. appointment whether you actually need it or not. Sending a big hug and best wishes, m’dear. πŸ™‚

  8. […] a list so she would remember all the things she needed to discuss at her much belated appointment (https://pollyannapenguin.wordpress.com/2015/11/20/hospital-appointment-only-7-months-late/). This is a technique I use as well because it (1) helps set the stage for the areas I need/want to […]

  9. Thanks Wren and I suspect you’re right about the Feb appointment, although then I’ve got to go from Feb to Nov without one (assuming they don’t cancel one or both!) Big hug over the pond to you too!

  10. The lump on your finger… mu family doctor calls stuff like that FLTs. For Funny Little Thing.

    Yay for finally having an appointment!

  11. At a guess your February appointment may make it about May or June so that would be just fine. That is, of course, always providing that JH Esq hasn’t succeeded in killing the NHS altogether by then. He is doing a very good job so far…

  12. Yes indeed Eileen – would agree with all of that!!

  13. Love it Lene – sums it up nicely! πŸ™‚


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