Tuesday, 22 September 2015

#RABlog Week: Post No.3 You want to know about living with RA?

Today's prompt:
Explain your RA - perhaps you want to tell someone else (doctor, sibling, child). Pick a person and decide what to tell them. You might want to tell them about living with RA or what it's like to have RA. ... You might also choose to write to a newly diagnosed person about life with RA.

Just recently, I lost one of my oldest, closest friends to ovarian cancer. (My tribute to her is HERE.) She had also been diagnosed, only a couple of years ago, with RA. I remember the conversation I had with her when she phoned me to pick my brains, so because she's very much on my mind, I'm going with that...this is pretty much what I told her when she asked me what it was like, what could she expect, and what should she do next...

Everyone's experience with RA is different because the disease can present so very differently from person to person. My first rheumatologist once said to me that if you lined up twelve people with RA, it's entirely possible that if you looked at their blood work, all twelve could be completely different. They could all be presenting very different symptoms - some might have considerable morning stiffness, others not so much. Some might have a lot of swelling in particular joints, some none at all, and some could have swelling everywhere. Some might have some involvement in joints that aren't typical for early presentation, while others have a really straightforward (if there is such a thing!) presentation of sequential changes. And THEN, there are the meds, and the different ways everyone can respond to the same medication. More on that later...

You need to build good solid relationships with your doctors - that's incredibly important. You'll probably be seeing a whole lot more of your GP because, ideally, your GP is the hub around whom all your other specialists revolve, and they need to be updated every time you see someone new, or something changes with your treatment. The next most important relationship you need to foster is the one with your rheumatologist. I don't know what it is, but in my twenty three year experience with this disease, I've come to realise that in a lot of cases, rheumatologists can be among the most socially inept of all medical specialists. I got lucky with my first one. And then very unlucky with a fair number in between - and I've heard some bothersome stories from other people about experiences they've had. At the moment, the doctor I have is brilliant, personable and generally easy to get along with, and that's marvelous. Maybe he's an example of a potential improvement across the speciality - I certainly hope so!

You have to trust your doctors, and that's one of the reasons you have to be able to work with them without it being a battle. You are going to get truckloads of unasked for advice from lots of well meaning, but ignorant people - as far as RA itself is concerned. At some point, you need to know that you have someone in your corner who is focused on working out the best possible treatment for you - for me, that's definitely my rheumatologist, with my GP right behind him. 

On the advice - learn to let it wash over you. Unfortunately, RA is hugely misunderstood by the majority of the general public. If I had a dollar for every time I've had someone move in on my personal space and show me their thumb or little toe and inform me that they've got arthritis there and oh boy it hurts like nothing else, so they know EXACTLY how I must be feeling, I'd be a rich woman! They mean well...I know they do, but they don't have the foggiest idea how I'm feeling. They really don't. And the people who tell you that, oh yes, their grandmother/father/great aunt 'has that', chances are, that's not the case either. What these people have is osteo arthritis - a degenerative form of arthritis that comes about through the wear and tear of a joint through age or injury. It's definitely painful and nasty, but it's isolated to specific joints, it's NOT a systemic disease. 

Another bit of advice you'll no doubt get will be about your diet, and the medications your rheumatologist will probably prescribe for you. The diet thing...you probably shouldn't get me started on diets. I could chew up some people and spit them out for the spurious diet advice they spruik, on the basis that it will CURE your autoimmune disease. It won't. OK? Know that now, and don't forget it. I wrote about this for Creaky Joints a month or so ago, so you can read that post HERE, rather than me ranting about it again now. Bottom line though, eat a healthy, well balanced diet, with as much local fresh food as possible. Stay away from processed food as much as you can. Moderate alcohol, and drink lots of water. THAT will keep you as healthy as possible - and you'll need to do that.

On the drugs... RA drugs aren't nice. Any of them. Some of them are downright nasty. But at this point in time, there is NO CURE for RA. The only thing that can be done - and this is a considerable advance on the few options that used to be available - is to administer drugs that interfere with the progression of the disease, and that minimises both symptoms and damage. Without those drugs, you risk the disease running rampant and out of control, causing irreversible damage and potentially life threatening complications at the extreme end of the spectrum. Initially, in Australia, you'll be started on DMARDs - Disease Modifying Anti Rheumatic Drugs. You have to have taken and/or failed all the available options in this class of drug for a specific period of time before you are eligible for the newest drugs - the bDMARDs - Biologic DMARDs. Biologics are made from human proteins, they're live, and they're injected or infused - although there are some really new ones, that are only available in specific trials in Australia at the time of writing, that come in tablet form. Taken in conjunction with one or more regular DMARDs, these drugs are proving to be effective for the majority of patients in slowing disease activity in some degree - some people are achieving a medical remission (i.e. no disease activity). Those are the main drugs. Others include anti-inflammatories, and a range of pain killers, supplements and different classes of drugs that are being used by pain specialists in an effort to avoid the use of opioids for pain. 

There will be people who try to dissuade you from taking these drugs - advocating a diet or alternative approach instead. Don't go there. In the very early stages of the disease, that MAY help alleviate symptoms so you'll feel better. However, it can't cure the disease, and by missing the window of early opportunity to control it with proven medical protocols, you risk it getting out of hand and doing real damage - you'll have a fight on your hands then, to come back from that, and you can't do anything about damage that's been done until it's bad enough for corrective surgery. It can sometimes take a while before you get to a combination of drugs that work for you. Sometimes the side effects can be so nasty that you have to stop a drug. Sometimes, it just doesn't work for you. You'll need to cultivate patience, and again, trust your doctor.

Stay as active as you can - that can seem counter-intuitive when you're feeling ill, you're in pain and fatigue is dragging you down. But there is good research to back up the idea that gentle consistent exercise can help moderate pain levels and give you more energy long term. Also, muscles atrophy frighteningly fast, so if you collapse onto the couch and stay there you're going to start finding it harder and harder to get up and move again. There's a well known slogan used by arthritis associations all around the world: Use it or lose it - and it's absolutely true. You don't have to train like a demon and run marathons - although, if you can, hats off to you and go for it. But, regular walking, swimming, cycling, yoga, tai chi, and other low impact activities are good for you - physically and mentally. 

Most importantly, educate yourself. Learn about the disease, learn about the drugs and how they work, read about all the diets and what the medical fraternity have to say about alternative practices. Ask your rheumatologist about things you've been reading so you know where he or she is coming from. When you visit your rheumatologist, if there's something you don't understand, ASK for an explanation. My doctor always gives me printouts of anything new he's prescribing for me so I have the information - ask for those if it's not your doctor's standard practice. In Australia, the Rheumatology Association has a website where you can access lots of information via their information sheets. You can find those on the bottom right hand corner of the home page HERE. They're excellent, free and come in printable form.

Lastly - yes, I will draw this to a close, but am happy to continue the conversation with anyone who wishes to contribute in the comments - try not to live your disease. You got sick, and that sucks. It really does. BUT, you're still you. The interests you have, the things you do, the activities you're passionate about - they're all still there. You may, over time, have to adapt how you do them, and some you may have to let go. But there will be other things you'll find that are just as interesting and that bring you joy. There may even be things that you find because you got RA that you may never have found otherwise (who'd have guessed I'd be writing for a living...?). There's another saying that I love and try to live with: I have RA, RA doesn't have me. It's worth printing that and putting it somewhere you see it all the time - for the bad times, and there will be bad times. But they will pass and there will be good times too. And I'm always here if you need to talk, ask questions, or just have a howl...so don't be a stranger.


  1. Replies
    1. To be honest, Lene, I didn't love having this conversation with Lizzie...I remember being SO angry at the universe that she'd got sick too. She taught me something though, in how gracious she was in learning to live with it, and again at the beginning of the year when she was diagnosed with ovarian cancer. She gave me a lasting lesson in how NOT to be a victim - no matter how crap I might be feeling.