What I've learned this week

This week I decided to join some online RA communities, including this one, for support. For a few days I also kept a detailed diary. Here are three things I've learned this week.

Online communities definitely help me to gain a better perspective on my RA. In addition to this one, I've found PatientsLikeMe and RA Guy (blog and Facebook) to be particularly informative and supportive.

RA symptoms vary a great deal and are unpredictable. I have been fighting the symptoms but from now on I'm going to try to accept them - dancing rather than fighting.

I worry too much and too often. From now onwards I'm going to worry in the morning and then stop. No worrying after lunchtime - it's the law!

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  • Oh you did make me laugh GreenFlower with your "no worrying after lunchtime". I think that's a brilliant idea and I am definitely going to give that a go! Although as probably the world's worse worrier not sure how I will get on.

    Tillyx

  • Thanks for your message. I appear to have started some sort of anti-worry movement but that can't be a bad thing.

  • Greenflower, now thats a different take on things. I like your attitude. I think i will have to give it a go.

    Mind you we are a great bunch on here for support. They will cheer you up and comfort you when your having a hard time and we are known for going from the sublime to the ridculous. We need a laugh as sometimes our lives are so hard to bear.

    welcome. sylvi.xx

  • Hi sylvi, Thanks for the welcome. I hope your 'no worry' afternoon is going well. I have to keep reminding myself but it's a good feeling to put worries back in the box until tomorrow.

  • Hi Greenflower

    Where all ra warriors on here!

    Try the website RAwarrior - very informative and can follow on fb & twitter also!

    Welcome to the site hun,

    Cheers Sci x

  • Hi Sci. Thanks for the welcome. I'll have a look at RA Warrior.

  • Hi Greenflower - thanks for making me grin madly - I'm opting into your manifesto re worry so we can compare notes as we go! Tilda x

  • Hi Tilda. On reflection, I think I do have a manifesto with regards to staying positive about RA. Welcome to the programme!

  • Oh wow that's me sorted GreenFlower - So I'm now a fully signed up member of the "no worries it's the afternoon" brigade thank-you! I started today and had friends over and we all laughed like drains and all the morning's worry about upsetting my GP by pushing to get MTX by injection faded into the ether (well almost!) TTx

  • I'm glad you had a fun afternoon. And I think I'll be joining your 'MTX by jag' campaign once I get to see a rheumatologist.

  • Ah so you're at the beginning of the RA journey then? How far are you - have you seen a GP yet and had bloods taken or been referred to a rheumy yet? It shouldn't be a problem getting to take it by injection but because I live in an island I'm treading a new path so it's going to be fairly uphill I've been warned. They have to bring it up from rheumy services south and then I have to be trained by nurses who aren't used to training patients for this purpose. Nothing is easy or straightforward with rheumatology it's worth knowing from the start! Tilda x

  • I've been referred and I'm on the waiting list.

  • Well that's the first big hurdle done GreenFlower. Getting taken seriously by your GP is a very good step in the right direction at least. But the worry is an issue at this stage because you're in limbo land until you're diagnosed and for me that was the worst stage of all I think although being diagnosed and put on these drugs puts you onto the next but slightly less awful rollercoaster I've found. Some good pointers; photograph visible inflammation to show the consultant if you have any and don't take any pain relief/ anti-inflammatories or steroids for a few days before attending your first consultation. It may be very straightforward in your case but if that is so you will be one of a minority - many here take a few shots to get diagnosed and some are dismissed despite revealing bloods and symptoms so get all the evidence you can gather to support your case with. That's my advice - and of course remember not to worry in the afternoons! TTx

  • Greenflower! I like your law. xx

  • nice to meet you im a worrier too and try not too .. keep going xx

  • Hi GreenFlower, what have you started? Ilike your attitude & give it a go when pain allows. Thank you. Good luck. weemikec

  • Hi Orlando. Welcome to the programme! The pain is a right so-and-so isn't it? When I start to worry I find it useful to be able to say to myself "Leave it alone!" otherwise I start to obsess about RA, which isn't be good for me or those around me.

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