I saw rheumy last Friday. I have been feeling pretty crappy, so it’s taken me a few days to get around to this post. It wasn’t the best appointment…or at least it didn’t start that way.
It got me thinking about the importance of a collaborative approach to treating Rheumatoid Arthritis, or any kind of inflammatory arthritis. Heck, any kind of chronic condition.
Normally a ‘collaborative approach’ means ‘lots of specialists who are supposed to talk but never do’. What I mean is collaboration between the patient and the rheumatologist. A partnership.
My usual rheumy was called away to an emergency in the hospital. So I saw the registrar. I’d never met her before, so she gave me the 30 second history treatment…questioned everything I was doing and made remission seem like a very simple thing to achieve.
She criticised my methotrexate dose, my prednisione dose, my Naprosyn dose. Lectured me on the importance of exercise, and didn’t stop to listen when I explained that I DO exercise, and basically treated me like an object that she needed to colour by numbers.
She was young. She was going by the textbook – not the patient.
She felt my joints, felt the bogginess, marvelled at the lack of swelling – I told her I don’t often have swelling – and questioned me on the level of pain. When I told her I’d been taking 15mg of prednisone for the last two months she launched into a lecture on prednisone and how terrible it is.
I know. I take it every day. I know what a terrible drug it is. But it sure does work. And I needed the pain relief. I had to make a hard choice.
Then I couldn’t take it anymore. I gave her a lecture back. Very politely, but very firmly.
Prednisone is essential right now. Until I took the prednisone I didn’t realise how much pain I was dealing with every day. It sneaks up on you, gets a little more, and a little more, until it’s actually unbearable. But you have to bear it. Life goes on. There is no one to take the pain for me. Or even take on some of my load to make my life easier. I am alone.
So I am very good at prioritising. I know what MUST be done to keep my kids safe and healthy and (mostly) happy. Everything else is gravy.
I stopped her dead and explained just how bad the pain had become. I told her very frankly what it felt like, and what I was and wasn’t capable of. And then something strange happened.
And slowed down, and started again.
She stopped telling me I need to up my methotrexate to 15mg immediately. (I refused to do that, anyway – 10mg is screwing me up enough already!)
She read back over her notes and thought for a minute. She looked back over my file, where my significant problems with methotrexate are well documented, and acknowledged my desire NOT to up methotrexate for a long while – I need a break from side effects.
She suggested I add in salazopyrin in a few weeks when my side effects have stabilised on methotrexate. She wrote down a slow, long taper for the prednisone instead of the sharp quick ‘you have to get off this stuff’ taper she originally wrote down.
I guess she had a light bulb moment and suddenly understood that after dealing with RA for five years, and all the meds and the pain, I’m worth consulting in my own treatment plan. I have studied every treatment protocol, I understand what each drug does, and what it should do, and what it shouldn’t. I accept the risks and the side effects, unless the toll is too high, and then I refuse. This is my choice. As I often say, there are no longer any good choices on the table. The mild drugs like plaquenil and simple nsaids don’t do the job.
It is my body, and my life and it’s in my best interests to be informed, and proactive. And it’s in my treatment provider’s best interest to respect that, and respect me, and discuss options with me, and talk to me, not just talk at me.
We both need to view it as a partnership. But ultimately I am the one who has to live with the consequences of these treatment decisions. And some of the consequences can be heavy, these are some powerful medications we’re talking about. But the consequences of NOT taking these drugs can be just as severe. It’s a crap shoot. But because I am the one that needs to live with it, I am the one who has the final say.
Ultimately it was a good appointment – but it took a lot of bridging of the communication gap.
Which really highlights the benefits of seeing a regular rheumatologist, one whom you can get to know, and they can get to know you, as well as gets to know your disease. I know I am not ‘textbook’ case. I know I experience side effects that most people don’t experience at such low doses of methotrexate. I also know that I am a well informed patient, I have researched my disease, and I have suffered it for five years. I am proactive in my treatment. I look after my general health, I exercise even when it feels too hard, too painful. Because I know I need to do all this if I am to have any hope of a normal life again.
And my regular rheumy knows this too. He knows not to lecture me, because he knows I am already doing all I can, and I don’t need telling. My health is my biggest incentive – and I work hard. New registrar rheumy learnt a lesson in listening, and taking a moment to assess a patients personality and state of mind. It only really took her an extra five minutes.
I go back in 10 weeks. I hope my regular rheumy is there. I need to see him. He knows me best, and I trust him completely. But if I see new registrar rheumy chick again, I will be OK with it. We will continue to build a relationship – because in long term, chronic conditions, there needs to be cooperation between the treatment provider and the patient. There needs to be communication and mutual respect. There needs to be an honest partnership, and there needs to be understanding of the disease, and the person. They are not one and the same.