Didn't realise quite how much it was all affecting me

Hi All, got a call from the appointments office at the hospital this morning saying the consultant I've asked to see for a second opinion will see me on 3rd January :) Had been warned that he might not agree to see me as I've been listed under a different consultant for the past several years. I expected that if he said yes I'd have a long wait so when I got the call today I was surprised,delighted and very relieved. So much so that I had to hastily finish the call so I could burst into tears. Not neat girly tears either but big gulping sobs. Knew I was finding it all stressful but didn't realise quite how badly. Had to pull myself together quickly as had to drive to the hospital for my 20 year research check with NOAR where I discovered that 1) my blood pressure is too high (I wonder why) and 2) I seem to have shrunk by and inch and a half. I's just assumed my kids had grown a bit, not that I'd shrunk! Somewhat perplexed as I'm only 57 and thought it'd be quite a few years before I got the dreaded aged shrinks. Have a 2nd OT appt the day before my rheumy one which will make six hospital appointments in six weeks with a podiatry one pending. Wonder if this is some kind of record? Not complaining at all as I know I'm lucky to be seen from what some people have said but I am beginning to wear a rut in the road from home to hospital.

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  • Oh gosh - I'll be seeing my rheumy on 3rd Jan too so I'll think of you! Like you, theres quite a bit riding on my appointment and I have high expectations which I've got to try to moderate. I'm putting together a sort of script to talk to her about and will do that BEFORE Hogmanay otherwise I might get slightly distracted. I'm taking my partner with me too, so there will be someone else to back up my argument.

    Have a good christmas/ hogmanay and good luck on the 3rd

    C

  • Thanks Cathie. This time I'm going in with very low expectations having been knocked for six last time - a case of hope for the best but prepare for the worst! Sadly I don't have a partner to take as back-up (don't think he could handle sick me) but I'm used to being self-reliant most of the time. At least now I can focus on Christmas now. Hope your appt goes well and you're not too fogged by all the festive cheer ;) x

  • Oh that's great news Mistymeana - no wonder you were gulping with relief and emotion - I would have been too. I don't think these people have any concept of how much rides on these consultations for us.

    I have only been seen once since diagnosis over a year ago now - and I won't be seen until March if I'm lucky. I haven't even had my joints examined by anyone in between and am not monitored for anything apart from bloods re MTX.

    I feel that at these very rare appointments I have so many questions to ask usually that it becomes quite a gulping affair when I leave the consulting room. I also think my consultant could easily turn round and say "oh by the way I don't think you have RA - it's all OA" - or Fibro - or something else entirely. He did tell me to "keep an open mind - things could change"

    This lack of confidence on my part is because he appears to rely on me to have all the info such as blood test results and never seems to have my history on him at all so he will say stuff like "remind me - have you ever been x-rayed?" or "remind me - do you have a positive or negative rheumatoid factor?" which sort of throws me. But then I've only met him 3 times in 2 years and the first time he said "inconclusive", the second time he said "Sero negative RA but keep an open mind" (even though I have a positive rheumatoid factor) and the third time he said "all going well - still think it's RA and want you to switch to injectable MTX next". And I bounced out feeling pleased with a short term plan - little knowing that I probably wouldn't see him again for another year!

    I will think of both you and Cathie on the 3rd Jan - so soon really! Tilda x

  • I hope we can put some of these difficulties to one side for a few days, and that our bodies cooperate. I've just spent the whole day cooking - Christmas cake a bit late I know + a special meal for my tai che teacher. I'd never have been able to do this a few years ago!

    Xxx

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