2 days to go until I see the rheumatologist

My private rheumy appointment is due on Friday evening and I'm feeling pretty tearful. After my last rheumy was so dismissive I feel really anxious about this meeting. It's like a cloud of depression and fear is sitting on my shoulder. Unfortunately this happened at my last appointment too and it makes it very difficult to think and communicate clearly with the consultant. On one hand I feel like if I make like an ostrich perhaps I can continue without taking the scary drugs. On the other hand I know I'm currently living a half life and the longer this goes on the worse the damage to my joints could be. The pain in my hands is bad right now and my feet are even worse. Perhaps it's because I'm feeling stressed? The icing on the cake is the DWP phoned last night and I need to attend my ESA medical next week.

I like to think of positive things too for my blogs so I am pleased to say my diet is still going well and I've now lost 26lbs. I threw out lots of clothes yesterday as they're all to big..yay! I've started swimming again for the first time in about 5 years. I also tried cycling last week but am building up the courage to go again as for days after I felt like I'd been kicked by a horse in the vajayjay!

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  • Before you go to your appointment write down things eg; how you feel,what joints ache,about your depression,crying and anything else you might think will help you today.

    The medical use a stick,scooter if you have one,walk with difficulty and struggle as much as you can. simple things like lifting your leg will go against you.

    Pleased about the weight, you rock girl. well done.

    sylvi.xx

  • It's a big step isn't it - and you half want to get a firm diagnosis and some treatment, but also want people to say that it's just a temporary thing that will go away without drugs even if it means you stay in pain, so no good result either way. This bit of the journey is really horrid, so I do feel for you.

    However, follow Sylvi's advice and today & tomorrow write yourself a list for the rheumy so you have clear answers ready: when did the symptoms start, which joints hurt to start with and now, how does it change throughout the day, how does it affect your sleep, what painkillers do you take, the bloodtests you've had done etc etc. I think it's also important to say that you've been trying to help yourself by losing weight and taking exercise.

    You may also be asked what you are expecting from the appointment. Unfortunately I've found that rheumy's are more interested in the state of your joints than the inside of your head - and are less bothered about how miserable you are as they generally leave it to your GP to treat the depression caused by RA. So try to focus on all the physical symptoms first, and then explain how you feel.

    And as for the ESA, try to put it out of your head until next week. One hurdle at a time! Good luck, Polly.

  • Hi Paulywoo. I've nothing much to add to Polly and Sylvi's suggestions but well done for the weight loss and good luck for the rheumy apt tomorrow. Just tell it how it is and explain how hard you are finding this limbo. That's what I did and made sure he understood clearly that the uncertainty was worrying because of the fear of joint damage not because you actually want the medication. Emphasise your hands and if you have any photos of swollen joints then print them off because they could be very helpful. Really hoping you get some certainty either way and best outcome is that this rheumy is much, much more compassionate and thorough and you feel you can talk to him or her. Sure you can't get another rubbish one - especially not as you are paying this one yourself - here's hoping anyway. Please let us know how you get on straight away whatever the outcome. TTxx

  • Thanks for all your kind words and advice. When I wrote my blog this morning I was feeling pretty down. Pain is a funny thing. I don't know about you but I find I cope quite well until all of a sudden out of the blue it just hits and makes me feel awful. I look in the mirror and see a tired, pained and stressed person looking back. It doesnt help that I'm unable to blow dry my hair right now so I go around looking like a scarecrow. Anyway, I'm feeling a lot better now due to the following:- 2 paracetamol swallowed with 2 ibuprofen, tea and crumpets. A trip to the shops where I bought a lovely girly pink sports bag to take swiming, some sparkly hair clips which I'm wearing, glucosamine an omega 3 tablets. After my shopping trip I went swimming and did lengths for 30 minutes. Feeling much more positive now and ready to face my appointment. Whatever happens on Friday I will check in asap to share my news. Fingers crossed I will have a diagnosis and be able to get on with whatever it is. It really helps to let off steam on here and saves my husband from my moaning. Thanks all xx Paula x

  • One of the best therapies in the world, for many reasons, is to go shopping! Especially for girly things.

    When I was still working, and having abad time, I tended to get a new lipstick. My pals at work just loved it when I would show off my new lipstick, so then I felt better instantly. Whatever it takes :)

  • Hope it went ok xx

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