RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?

I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.

Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)

Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’

Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.

I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.

Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!

 

Healclick.com – a new way of looking at your health

January 14, 2014 at 5:41 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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There’s a new website launching at 8 am Pacific Time (whatever that is!) and it sounds like (and in fact looks like, as I’ve been playing in the beta sandbox) an interesting idea.

It’s completely free to join and there will be no ads. (How’s it funded? Read on!) It’s designed by patients for patients and the idea it’s kind of social media for patients with a twist. You fill in all your details including your health issues, medications etc. and you can discuss topics, write about anything you want that’s treatment/patient etc. related and read what other people are saying. The twist is that you can look at other registered people (you can find me on there as Pollyanna Penguin) and the site will give you a percentage match to other people on the site, based on your conditions, treatments etc.

So OK, how’s it funded? Well anonymised and grouped data will be sold to research organisations – both pharma and universities. There’s some info on how it will be anonymised  http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html This may or may not be something you feel comfortable with – it sounds fine to me (but then I’m using Pollyanna Penguin on there!) but I’m sure some people wouldn’t be happy with it; well that’s entirely your decision – no pressure!🙂

If you want to give it a go though, here’s where to find it: www.HealClick.com, or if you’d like a little more info, have a look here: www.indiegogo.com/projects/revolutionizing-patient-sharing or here:

 http://blog.healclick.com/uncategorized/we-got-answers

or Wren over at rheumablog also has a post about it – she’s joined too.

I’ve already had someone link to me – presumably we’re a match – or perhaps it’s someone that reads the blog, or maybe both. Frustratingly I can’t find out right now as I’ve stupidly lost my password! Because it’s still in beta, someone’s got to sort this out for me manually, but I’m sure once it’s live it’ll be as easy as any other site when you lose your password (which I blush to admit I do all the time!) Anyway, I’m excited to find out and I’ll be watching the site with interest to see how it develops. See you there?

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