#RABlog Week 2016 – Active Vs Reactive

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RA Blog week Day 2 prompt :  Active versus reactive patients – We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions. Tell the story of your move to active patient or why you are not there as yet.

 

Active vs Reactive.  In truth, I was always ‘Active’, but not always in productive ways.  When I was first diagnosed, I was ‘actively’ in denial.  I was a high achieving, career driven, physically fit, get 25 hours out of every day kind of person.  I had a husband, and two small kids. A business. I jogged daily for fun.  I spent a lot of time in the gym, I made good money.  You know the type.

When all the ‘gym injuries’ finally became constant pain, and months of tests and doctors eventually resulted in a diagnosis, I was unimpressed.  No way did I have an incurable disease.  That’s about all I remember hearing.  I also remember my rheumatologist saying that he would get me into remission, but it could take time.  He said it might take as long as two years.

That makes me laugh now. It has been ten years now and I’ve never gotten near remission.  I haven’t even had a pain free day.  I have had about 30 mild pain days in that ten years.  Would it have been different if I had behaved differently?  Who knows.  I know that I could have done things better, but to be fair, so could my rheumatologist.

My rheumatologist failed to get through to me what a potentially serious diagnosis I was looking at.  He listed off a bunch of diseases that I’d heard of, rheumatoid arthritis, lupus, polymyositis.  Heard of, but didn’t understand. To be honest, my reaction in my head was something like ‘rheumatoid arthritis…arthritis?  What?  that’s not a big deal.  Lupus??? Wait!  I don’t want THAT.  They’re always talking about THAT on Dr House.  Polymyositis.  That sounds like something to do with muscles…’

I was a gym junkie and fitness nut, I knew that ‘myo’ meant muscle.  Muscle pain wasn’t my main problem, though I did have days where everything hurt, and my muscles did ache. So some of what he was saying made some sense.  But still, steroids?  Prednisone?  Did I really need THAT?  And did I really need 50mg? That was a big dose, this much I knew.  He then pushed three more prescriptions at me, methotrexate, salazopyrin and plaquenil.  Triple therapy.  I know now studies show that this is as effective a combination as biologicals, and far cheaper. Which is why in Australia we have to go through several DMARDs and combination of DMARDs before we can be prescribed biologicals.  I also now know, in hindsight, that he was treating my disease as aggressively as he was allowed to do.  Had I known more back then, I would have understood that I was in big trouble and that he was treating me for severe, aggressive disease.

But he didn’t SAY that.

That was a huge failing on his behalf.  I see why it happens.  He had lab work, x-rays and a history. He examined my joints.  He had about 10 minutes to decide what the best course of treatment was.  And he went aggressive, based on his findings.  Years later, with me now completely disabled by disease, we talked about his approach.  In his experience, most patients became overwhelmed by too much information at the outset and then often sunk into depression and anxiety.  He tried to avoid that by being more positive about the likely disease course, and drip feeding essential information over time.  He admitted that in truth he had no way of knowing which patients sitting in front of him would go into remission and which small minority would become completely disabled by their disease.  But because most people would achieve remission, or low disease activity, he gave people a lot of hope.

I was one of the minority, with refractory (non-responsive) disease.  And he realised many months too late that I would have benefitted from a bit of scaring on that first day. That I don’t scare easily. That the worst case scenario would have made me fight my disease differently, and that I am not prone to anxiety, catastrophizing or depression.  He actually apologized.

But he didn’t need to apologise.  He took the right approach for most people.  It just wasn’t effective for me, because his glossing over the severity allowed me to stay in complete denial of what I was dealing with.  That was MY bad.  Put together it was a communication issue, brought about by the fact that there isn’t much time to take personality into account in the diagnosis process.  And unfortunately your natural tendencies when dealing with a crisis – and a diagnosis of Mixed Connective Tissue Disease and severe Rheumatoid Arthritis IS a crisis – will dictate how you respond, and how well you follow medical advice.

My response was denial.  Had I been more scared, I would have been more compliant in those early days.  Early, aggressive treatment, which my rheumatologist tried to give me, has been shown to have the best outcomes.  It might have made a difference.  It might not.  But if I could do it over I would do it differently.

Mixed Connective Tissue Disease is notoriously difficult to treat, very often not responding to the standard RA treatments.  I would have benefitted from my rheumatologist telling me this.

But how was he to know?  We are all different, made up of different personality traits.  And personality has a huge bearing on how a person will cope with serious illness.  I have seen many people diagnosed with mild disease and it has knocked them for six, sent them spiraling into depression and anxiety and left them more broken mentally than physically.  And then there are people who have severe disease, who swiftly become wheelchair bound and house bound, who retain a positive attitude and do well.  His approach makes sense – a positive attitude and outlook does help.

But for me, his prognosis just made me dismissive.  I didn’t take it seriously, and I didn’t believe him.

I refused methotrexate, mostly because I didn’t want to give up my red wine.  I took the prednisone and the plaquenil and the salazopyrin.   The prednisone helped some, but it didn’t make me pain free.  I expected to be pain free. Another communication problem.  My expectations weren’t realistic, again because my rheumatologist’s desire to give me a positive spin.  Had I been expecting ‘improvement’ I would have reported back that the prednisone was helping, when I returned six weeks later for review. Instead I said none of these medications were helping, and would diet help?  So ridiculous in hindsight. I so clearly had no idea what I was dealing with!

He reiterated that I needed these strong medications and to give it time.  He gave me no more information and I didn’t seek it out.  I took the medications but apart from that I ignored it all. Pretended it wasn’t happening.

So I went home and I strapped all my joints and I kept running, and I cut out gluten and dairy. And then I went gluten free vegan.  I bought heat packs and ice packs and started living life with them strapped to me.  Every day my hands, feet, knees and hips hurt.  Then my shoulders joined in.  I should have gone back to my rheumatologist to tell him that my disease was progressing fast, but I didn’t know to do that. I didn’t know what that meant.  I just tolerated the pain and waited until my next appointment in four months.

And the medications were making me sick, I felt worse, not better.

So I stopped them.

Within a week I couldn’t move.  Every joint in my body was inflamed.  I couldn’t walk, I couldn’t crawl.  I had never experienced such pain.  I couldn’t do anything.

For the next five months I was completely incapacitated by pain.  As luck would have it, my rheumatologist had to move my appointment, so it was six full months before I saw him again.  And when I did, I was a mess!

All that time when I was in extreme pain every day, I kept the house turning over somehow.  I closed the business.  I left the gym. I sure as heck didn’t run anymore.

That kind of pain changes you.  There was no more room for denial.   And when I saw my rheumatologist this time I wanted the methotrexate. I had restarted the plaquenil and the salazopyrin, and they weren’t doing much.  He put me back on high doses of prednisone and my GP gave me Endone (oxycodone).  And slowly, very slowly, I became more functional. But I have never had a pain free day since, nor gotten near to the level of function I had before that.

But during that time I started to read.  The big medical sites that were all homogenized and simplistic.  Rheumatoid Arthritis still didn’t sound that bad the way they wrote about it.  Didn’t sound like what I was experiencing. None of the sites talked about how incredibly painful having all your joints ripped apart was.  Funny that.

Then I joined facebook groups.  Some of these groups were a terrible mistake.  The negativity and misery on some of these groups was intense, and not at all helpful.  When I introduced myself as a newbie looking for advice, I was bombarded, and mostly with people talking about methotrexate and how bad it was.  That it was chemotherapy and a terrible drug that would kill me.  So much fear mongering!  Terrible for someone new to the disease.  Scary.  Bit it DID make me research methotrexate properly, and realise that it is the gold standard treatment for a reason. Most people tolerate it well and get good benefit.  I started to read posts, and then fact check them.  I learned a lot.

And other groups were fantastic.  So choose your support group wisely.  There are some great groups out there, and there are some not so great groups.   Each person will need something different, and there will be a support group that suits you.  But the thing to remember? Get your SUPPORT there, NOT your medical advice!

And I found some great blogs.  Personal experiences and good information.  Those helped a great deal.

Another turning point was actually meeting another person who had inflammatory arthritis.  He had had arthritis for years, was around my age and the medications were working for him.  That gave me the faith to try the medications again.

And I gradually became an educated, empowered patient.   Active in my treatment plan, informed and prepared.   In those first few years, after my false start, I followed my rheumatologist’s advice to the letter. But after that first completely incapacitating megaflare, I started asking questions of my rheumatologist and we started having conversations, rather than him talking and me deciding silently to prove him wrong.  We developed a collaborative relationship, and learned to communicate effectively.

I endured terrible side effects, and the terrible pain continued.  I now have 5 DMARDS behind me and 4 bDMARDS down, and several combinations of each. Still nothing but prednisone really helps.  I am considered a refractory case, there is not much hope for improvement.

I choose to take opioids for pain relief, because without them I would be in bed every day, most likely in tears.  I have had periods of intractable pain, where I have considered suicide and come very close to acting on it.  But I won’t, because I have kids and they need me.  My opioid pain medications allow me to function most days to some extent, give me a few hours of relief.

I don’t have many choices left, but the ones I do have I consider, analyse and make in consultation with my doctors.  But ultimately, the choices are mine and I am qualified to make them, and that’s the benefit of being an active patient.

4 COMMENTS

  1. Communication, communication, communication. ALWAYS important. I remember my rheumatologist telling me to call if anything changed, or I was having a big flare that wasn’t letting up, yada, yada… Did I do that? Oh no, of course not. Because I didn’t want to be a bother. Because I knew he was hellishly busy. And when I DID drag myself in for the next scheduled appointment and he asked me how long I’d been in that state and I told him, he came very close to losing his temper with me. Said he NEEDED to know what was going on in between appointments if there was stuff happening, because otherwise, he couldn’t treat me properly. I sometimes wonder how much the social conditioning we get as women, to always put others before ourselves, impacts on how we manage as patients with chronic illness…particularly with the doctors…

  2. Neen, I had a similar experience with diabetes. I refused to update my treatment because I could run it the way I wanted to do. Heck, I did not even see a doctor at one stretch for over 20 years. I look back, and I think what the hell was I thinking? I do not know; I surely do not.

    Now, of course, it was too late. 42 years post diagnosis I am doing everything I need to do, but I cannot regain those years. I was too casual, too unconcerned to save myself.

    So what do I do when I Dx’d with RA? I stay on schedule see my doctors do my blood work, and 16 years later, some days I feel awful but others I am ok. In four years I will be close to living with RA the total amount of time I refused to see a doctor for diabetes.

    Seems like I lost some things along the way, but i gained as well in some great ways.

  3. I think the crux of this post is all about communication, having a relationship with your rheumy/consultant/GP in which you feel comfortable enough to ask questions, share how you really feel and make suggestions etc and for your Dr to be able to do the same. I have always been lucky in my 24 yr RA journey with my rheumies, all but one who I felt didn’t listen to me properly, luckily he left and I got Dr Dishy who is a fabulous rheumy. I also feel that becoming an active patient does take time, experience and research, it doesn’t just happen overnight as soon as you’re dxn. Our own personal RA journeys are very much a learning process, not just for us but also for our Drs.

  4. Thanks for sharing your story, Neen. It really is all about communication and I think it illustrates how important it is to create healthcare system where doctors have more than 10 minutes. Where it doesn’t take years for them to get to know their patient. If only…

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