RAW History: my diagnosis

In the RAW History posts, you'll find my story.  Mostly for my own catharsis, but hopefully to let others know they're not alone.  RA is a cruel, insidious disease and everyone's journey with it is different, but there are so many elements of it that are common to us all.  

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What doesn’t kill you makes you stronger.

It’s a well-worn saying, trotted out by well-meaning people at difficult times to make people who are on the receiving end of bad luck or bad times feel better.  Hell, Kelly Clarkson even made a hit out of it.  For the first twenty years of my life, I thought it was a bit of a cliché – that was, until I heard the four words that changed my life.

“You have rheumatoid arthritis.”

Now, most women (myself included) hope for three little words – “I love you” – and then the four little words – “Will You Marry Me?”.  The four I received from my doctor weren’t entirely unexpected, neither were they completely unwelcome.  Nonetheless, they weren’t exactly my four words of choice at the ripe old age of twenty. 

I distinctly remember the time leading up to my diagnosis.  I was studying at uni, had a great group of friends, and spent more time working than partying.  My friends and I would play netball every Wednesday night, with our win-loss record more of a comedy than a tightly-gripping drama.  In spite of that, we had a great time running around after the ball and the compulsory social session that would follow.  In our early lectures each Thursday morning, we would compare war wounds – bruises, cuts and grazes – and moan and groan our way through the day.   I blamed “getting old” for the fact that my knees were perpetually swollen and stiff, and given how bad I knew netball was for ankles and knees, I’d never really considered it to be anything but the side effect of exercise!

My first exam of first semester was Toxicology, and I remember feeling awfully under prepared.  So when my hand started to spasm around half an hour into writing time, locking it in position and leaving me unable to hold the pen, I wrote it off as exam nerves.  When they didn't unlock, and I realised that even my left (non-writing) hand was swollen and stiff as well, I figured I should get it checked out.  I went to my GP, who examined the swelling in my hands, drew some blood, and prescribed me a strong anti-inflammatory.  Despite knowing better, I took the medication on an empty stomach, and proceeded to vomit my way through my next exam.  Not ideal, but as I recall I still managed a distinction on the paper... probably one of my more focussed efforts, despite the distractions!

I’d finished exams by the time all of my bloods had returned.  I remember sitting in the chair opposite my doctor, as he turned to face me, leant down and took my hands.  Then he said the four words that changed my life – “You have rheumatoid arthritis.”.  To be perfectly honest, I didn’t feel the Earth shift, or the wind change, or even the clouds cover the sun.  The words came out of his mouth like an apology, a commiseration – but to me they were a validation.  It was so easy.  I’d learned about RA in class, I knew I had relatives with it, and I knew I had all the classic signs before I first went to him with the symptoms.  There are people who go undiagnosed for months, or even years – my journey was like taking a Concorde instead of a fixed-wing aircraft.  Quick, but not entirely painless.

My doctor called in a favour with one of the rheumatologists in town, and got me an appointment quick smart.  Unfortunately, the rheumatologist I had was a bit too old-school for this forward-thinking, knowledge-seeking pharmacist, as he threw every trick in the old, leather-bound book at me.  Being a child of the computer generation, I researched the latest and greatest treatments as he continued to clutch at straws with hydroxychloroquine and gold injections.  I struggled terribly with methotrexate - vomiting for five or six days at a time after my dose, with my stomach having perhaps one good day before I would have to dose again.  We switched to injections, and with my terrible needle-phobia I would feel physically sick all day when I knew my injection was coming up.  I became a puffy, moody mess on prednisolone, and the longer I struggled with the pain and stiffness, the less positive I became about RA.  My poor housemate watched me struggle to climb the stairs to the bathroom, and would put up with my short fuse and emotionally labile self.  From being relatively OK with the diagnosis to feeling completely at sea with a disease eating me alive, I couldn't motivate myself to get out of bed in the morning.  The pain was excruciating, the stiffness unrelenting, and my emotional state beyond repair.

A couple of years later, I finished university and started my first full-time job.  I moved back to my home town, and given the meagre pay packet I took home each week, moved back in with my parents. I was an intern pharmacist, on my feet all day, working 40 hours a week and studying another 20 or more.  I had no energy, but knew I had to complete my board hours in order to be fully qualified.  I would drag myself out of bed each morning - or, on occasion, call either my mum or dad to help me - and get myself to work.  There were plenty of days I shouldn't have bothered, but I didn't want to risk coming in under my board hours before my contract was up, or lose the chance of getting a permanent contract once the year was up.  I've no idea how I did it, to be perfectly honest.  I got to the end of the year and breathed a huge sigh of relief - but still, the RA kept progressing.

When I asked my rheumatologist about biologicals at my end of year appointment, he told me that they were last-chance treatments for "when you're crippled".  My response to that statement was as simple as it was quick - "I thought the whole point was not to get there?".

Thankfully, that wasn't the end of my story.  Five years I had struggled, not knowing that I had the power to choose my doctor, to choose my fate.  It wasn't until a few months later, when I was thrilled to discover my new, previously un-serviced home, was soon to be home to a rheumatologist with a reputation for being a bit of a cowboy.  Just my kind of medico.

My first appointment with Dr G was pretty straightforward.  I can recite, verbatim, the opening part of our conversation.

Dr G: “Nice to meet you, what is it you do for a living?”
Me: “I’m a pharmacist at the hospital.”
(He  reaches out to examine my hands)
Dr G: “What have you been on so far?”
Me: “Methotrexate, Prednisolone, Leflunomide, Hydroxychloroquine, Gold injections…” (trails off)
Dr G: “Pfft.  How do you feel about biologicals?”

It had taken five years to get there – and in under 30 seconds he had worked out that we’d been wasting time and I desperately needed the good stuff.    It was like the relief of being diagnosed all over again – a weight off my shoulders, and given we could stop pred, a weight off of my weight!

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So that's the first five years... in a very, very abbreviated form.  While the diagnosis was swift, the road to a functional existence wasn't.