My Pathway to Diagnosis
In January 2010, I was diagnosed with arthritis. Specifically, I was diagnosed with Undifferentiated Peripheral Seronegative Spondyloarthritis, referred to hereafter and elsewhere on this blog, as SpA.SpA presents more like rheumatoid arthritis than osteoarthritis. In both cases, they are classed as systemic autoimmune diseases. You can read more here on the similartities and differences over here.
So how did I end up with my diagnosis? What were the signs and symptoms? How did I go from not having arthritis to having arthritis? And why, of why, did it take so long to get a diagnosis?
Well, that's a long story. If I were to start at the beginning we must go back to 2004. It would be another six years until I was diagnosed and even longer where it is here, eight months later, this blog picks up and I commence my role as subject number 1003 in a medical research program established to study the effects of Adalimumab on people like me.
For those interested in the story from the very beginning, the remainder of this page contains all the events, as best as I can remember them, that occurred between the period from September 2004 until August 2010.
So, let's begin.
For me, 2004 was a fairly ordinary and unremarkable year. I know I turned 27 but I cannot remember what I did on my birthday. It was a Sunday so I wouldn’t have been at work. My work, for those that are curious, occurs in the realm of the Information Technology industry and perfectly suits the geeky geek girl I truly am. I had also recently picked up a love of running.
Having lived my earlier years from age 6 to age 16 deep in the competitive world of swimming, parts of which were spent with my squad at the Australian Institute of Sport, the fact that I took up running and loved it surprised me more than anyone. A run gave me an opportunity to get away from the office and let my thoughts and imagination wander where it liked. At the same time, I could get a good workout. I would often set the iPod on to my University lectures or an audio book or some random podcast I was interested in, strap it tightly to my arm and take off. At that stage I was working in Collins Street in the heart of the Melbourne central business district. To the west is the inner mini-suburb of Docklands containing gorgeous views of the city skyline. To the east is the famous running track known as The Tan.
September 2004 - There was nothing that was out of the ordinary on the day I rolled my ankle. The weather was lovely and the sky was a beautiful rich blue you tend to see when Spring springs into season. There was just me running the length of the South Wharf pier. A miss-step was followed by sharp, then throbbing pain. I knew right away that the roll I just had, wasn't a roll you'd classify as a lucky roll, the label you give to an ankle roll in which no damage occurs. I sat there on my derriere for a good few minutes before I got up. I hobbled to a nearby function centre and saw some staff busily preparing for the evening's function. The moment I walked in, they dropped everything in order to find me a chair, some ice and a phone. I was so very grateful for their kindness so I feel bad now I repaid them by dripping melting ice over their newly-polished floorboards. In my mind, 3km from where I needed to go to was far enough to justify calling a cab. In the cabbie's mind however, this was too short a trip to bother about. After a 40 minute rest, I felt I could weight bare enough to get myself back to the office and dumped myself, exhausted, on the couch in the staff lounge around 2 1/2 hours after I left the foyer. Not comfortable in pushing the ankle any further with a train trip and walk home, I called my partner for a lift. My bruised ego and my bruised ankle didn't move for another two days, except to visit Dr Flowers who ordered me for an x-ray that was to confirm no presence of a fracture. I rested up and then went back to work. Given that this was not my first time my ankle had rolled, the last being a lucky roll that occurred 4 months prior. With that in mind, I booked myself an appointment a clinic near the office and commenced physio with Stretch.
After Stretch had performed his initial assessment he decided I should attend twice weekly until further notice. In addition to ultrasound treatments, he gave me a resistance rope and issued me with daily exercises to do at home. I was also subject to having suction cup-looking, creepy feeling nodes attached to my ankle that caused electrical currents to penetrate the affected areas which was meant to stimulate the muscles. After a month of treatment I felt it time to test it out with a short 1-2km run. The results were not pretty. It was still swollen, quite sore and obviously not ready for running. I was very keen to do the right thing so I could hop back to into running and told myself to be patient. It would be a while before I had another go.
Over the coming months, I continued to see Stretch and continued my therapy. The exercises got more intensive over time. One I remember was to stand, right foot only, on a pillow, close my eyes and hold my balance. Even now, regardless of how much practiced I have had, I cannot do it. My balance holds as long as my eyes remain open. As soon as I shut my eyes, that's the end of me staying upright. Despite my un-co nature with the pillow exercise, Stretch assured me that the results were in line with his expectations and that I was, in fact, progressing well.
December 2004 - I was asked by some work colleagues to compete in a 3-person team in the BRW corporate triathlon scheduled for late March the following year. I was extremely keen to join the team and had no reason to suspect that by March my ankle wouldn't be well enough to compete. By this stage, I'd attempted a few more runs and the ankle had held up provided I waited around two weeks between the runs themselves. Given it was a fairly extraneous event comprising a 400m swim, 5km run and 20km bike ride, I ran the proposal by Stretch. If Stretch was worried with the prospect of me competing it wasn't obvious to me. He told me it sounded like a perfectly reasonable goal to work towards. I signed up the following day and thought about how I might increase my training in a way that increased my fitness level, which I needed to do desperately if I was to take on all three legs of a triathlon and not regretting it. It had been a while since I'd graced a pool with my presence so I started with some light swims. I knew that the 400m swim would not be a problem given the fact that for many years, 400m was the typical distance of a warm up before the real training began. My concern was the run followed by the bike ride. I hate biking. Nevertheless, I continued treatment while combining as much exercise as I felt my ankle would allow.
March 2005 - On the morning of the event and I knew my fitness wasn't up to scratch. The ankle wouldn't allow me to train nearly as much as I would have liked and I knew I was in trouble when I set off. What seemed like hours and hours later, I limped badly over the line. By the afternoon, the ankle looked like the end of a pillow stuffed into a shoe and the intensity of the exercise itself murdered the rest of me.
Stretch furrowed his brow, put his hand to his chin and the audible "hmmmmmm" came out before he suggested I might want to see a specialist. Dr Flowers dutifully provided me a referral to an orthopaedist whose practice was located on The Avenue in Prahran despite not being located in The Avenue's hospital grounds. From the moment we started to talk I could tell I wasn't enamoured with the approach he wanted to take. His idea was to get me into theatre and "look around". If, while exploring my ankle's inner bits, he discovered damage, well of course he would repair it. While explaining he threw in lots of medical terminology he should know I, like most non-medical people, would not understand. Despite this, I felt I could make out enough to understand that surgery was his approach to assessment. Three thoughts penetrated my brain after I left the clinic.
1. Surgery. All surgery is invasive and inherently risky by nature.
2. He had made no suggestion of obtaining any scans, x-rays or other diagnostic images.
3. It is my personal belief that surgery should only be used as a last resort.
In the coming weeks I would use the phrase 'scalpel-happy skin slicer' to describe this specialist. I choose not to see him again and thought that perhaps next time I saw Dr Flowers I would ask for another opinion. That year however, I didn't even get a cold and had no reason to go and see a doctor. It wouldn't be until the following year that I would need a reason to see one again.
After the triathlon debacle, I stopped running completely in order to give the ankle a nice long rest until either I had answers, or it got better on its own. I start taking Paracetamol and Aspirin as self-prescribed pain management method on the bad days. On good days, I took nothing. It took no time at all to realise that, like my occasional migraines, paracetamol did as much as a good for my pain as eating an air sandwich did for my hunger. So I stuck with Aspirin and occasionally Panadene Forte (a mix of paracetamol and codene) which Dr Flowers gave me when a debilitating headache prevented me from going to work. I later switched to ibuprofen and later again, ibuprofen and codeine. This self-treating habit was something that would continue for many years to come.
Edit Oct 2012: I still have the same self-treating habit but it isn't a daily thing now. And somehow I haven't managed to ruin the lining of my stomach.
I start monitoring the problem by keeping a diary of activity, pain score and swelling. I was looking for any patterns because I noticed that patterns were not always obvious. The results were fascinating as much as they were frustrating.
It made sense that it if I was on my feet all day, say at a St John Duty, the day would end in soreness and swelling. What didn't make sense was that I would go to bed in such a condition and wake up relatively pain free the following morning. There was never any pain caused from a days' activity that couldn't be solved by having a nice sleep that night. The swelling remained in varying degrees of severity but it never went away completely. There was also something else that didn't make any sense to me. There were days I'd get bad pain and swelling on a day that was preceded by 3-4 days where actually did very little. Exams times made that clear. I'd spend days sitting at my PC studying hard, attend an exam, then spend a day lounging around watching DVDs or TV in order to thank my well-used partner. So why then, would I wake up and be able to do nothing but limp around like I had a tack pin stuck in my foot? I had no explanation for that.
April 2005 - It was though volunteering with St John Ambulance that I met Bill and Ted, two best friends who were at the time, Div 1 nurses. They were also both studying podiatry. It was inevitable that where ever Bill was, Ted wasn't far away and vice versa. Offering my ankle as a challenge, they wisely suggested that I see their mentor Boots, a clever and experienced podiatrist studying his way to a career in podiatric surgery. Boots was very likable which was just as well given my last experience. After an assessment, Boots declares it 'quite unstable' and suggests orthotics might assist in the recovery process by putting my flat feet into the right position. I like the orthotics and still wear them today. I think I also recall having an ultrasound or CT scan but I can't remember which type of scan I had. After a few months it became evident to both of us that orthotics were not improving my situation. If anything, things were starting to degenerate which appeared perplexing to Boots. It was then that Boots calls a podiatrist surgeon named Major Boots who agrees to see me.
Boots told me that while the Major was a surgeon, he spent the majority of his time looking for alternative options. Boots knew of my experience with my last specialist and agreed that invasive action should not be taken lightly. I remember him telling me that Major Boots would not suggest surgery unless he really thought I needed it. I believed him. Boots had earned my trust and I was confident that he was telling me the truth.
July 2005 - The first thing Major Boots does is spend 90 minutes examining my history, treatments, every inch of skin, every joint and every bone in my ankle and foot. The second thing he does is order an MRI. Boots was there to fill other parts to the story using language I could not possibly understand, but it was amusing to watch the banter. I tried to keep up but I had no hope. After the MRI scan I took the images with me headed to the car and opened the report. While I couldn't understand its contents, the extraordinarily large number of extraordinarily big words told me all I needed to know. I didn't need to understand all those words. I only needed one. My ankle was 'fucked'.
August 2005 - Surgery was scheduled for late October. Late October was chosen for two reasons. I was preparing to move house from one side of the city to the other following the sale of the apartment. Due to an unfortunate coincidence in timing, the move was scheduled to occur in the week prior to my University exams when I would normally do nothing but bury myself in text books, lecture notes and refuse offers of food and water until I had sit both of them. Being so close together, this situation came with dependencies and risk that meant it had to be very well planned, timed to perfection, and executed perfectly. There was no margin for error if we were to achieve both a successful move and a satisfactory exam result.
6 October 2006 – Moving day and my partner’s birthday. Not being morning people, the fact that we had to wake at 5am and hit the ground running wasn’t ever going to result in a mood one might describe as exuberant. The movers arrived at 9:00am. Not long after, the mood of everyone had deteriorated thanks to the realisation that one of our two cats was missing and, despite a lengthy search, was unable to be found.
The very last item destined for the truck was the washing machine. It was wheeled into the apartment buildings’ stairwell which was try hard effort of cast iron rails and marble stairs which and floors that, in is instance, didn’t work well aesthetically. Water trickled from the machine onto the stairway outside my apartment’s front door where I was to step. My right shoe simply didn’t grip the slick floor and my weak ankle couldn't stabilise me. I fell and my body lands on top of my damaged ankle. The tibia bone in my right leg snapped. Of course I wasn’t to know at the time, but I knew the situation was grim. The pain was excruciating and I couldn’t weight bare at all but I somehow successfully argued against going to the hospital. The problem was that we needed two of us to get it all done in one way or the other before I went to spend four or five hours waiting in an emergency department.
Once I was alone, I called a friend of mine named Bec. Bec is nurse who, at the time, worked at The Alfred and was likely to be on shift when I finally dragged my sorry self to the hospital. She confirmed she would be. 'Call me as soon as you are on your way' she pleaded before hanging up the phone. Then, it was just me sitting outside my new house, alone and waiting for the moving truck to arrive. It was very quiet. It was the first quiet moment I’d had in over two weeks. At that moment it being alone was the very last thing I wanted. My thoughts turned to my missing cat and I waited it out.
It was almost 2:00pm when the moving truck arrived. The first thing they unloaded was a chair for me to sit in and a second chair to prop up my foot which was slowly turning purple. One offered me a few cigarettes. I was very touched by his generosity given I had no possessions with me. As the furniture is unloaded, I kept watching out for the cat. The last thing to be removed from the truck was the couch. And it was there that she was found. Inside the couch. In one instant, a wave of relief bestowed all of our heavy hearts. She all the frantic moving and commotion she had crawled inside a gap in the couch. With everything in the house, the movers left as did my parents not long after. I finally get to The Alfred and the break in my leg is confirmed. I am put into a temporary plaster cast and told to come back in a week.
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| After 1 week - I don't do anything in halves, especially my injuries. |
At my return visit the following Friday, my case was reviewed by doctors at The Alfred’s trauma department. It was decided surgery was needed and I was operated on the following Monday. My exams, scheduled for Tuesday and Thursday of that week would go ahead without me. My leg receives pins and plates on the inside and another new plaster cast, one that was sturdier and heavier than the first cast, on the outside. I would stay this way for two months.
Major Boots would not consider operating to repair the damage that was caused by the previous injury for at least 12 months. Meanwhile, I was simply to deal with being incapacitated. Brian became my full time care provider. He unpacked and set up everything in the new house, he cooked, he cleaned, he did the shopping, drove me around, all while maintaining a full time job and his increasing levels of exhaustion in doing so. I however, could only muster a mood of sadness at best, and hatred and self-loathing at worst. I can never hope to repay Brian for all the work, the compassion, understanding and love he offered me during that time and, for some reason I’ll never truly understand, continues to offer me today.
There’s no doubt about the fact that this time began a lengthy low period of my life.
I hated my time on crutches. I hated it more than I’d hated anything. Having a shower, getting up and down the stairs of my home, getting ready for work, getting home from work, going to the printer to get printouts, getting myself a drink, going to the loo, everything was a physically draining and painful effort. I loathed it all and I hated myself for being in the middle of it. These were dark times in my mind.
31 December 2006 – It is New Years Eve and the last day I will wear my black knee-high foot brace. The plaster had been removed at the beginning of December, after which, I spent almost an hour in the shower feeling every last drop of lovely warm water trickle over the skin that had been covered in plaster for the previous eight weeks. I spent the next four weeks in the brace which was soft and, more importantly, removable. It would be another two weeks before I was allowed to try bearing weight. Putting my right foot flat to the floor for the first time in a long time felt very foreign. At the stroke of midnight, I tore off my brace and put a shoe on for the first time since early October.
I did not know life without extreme pain in my ankle and took more Nurofin Plus (ibuprofen/codeine combo) to help manage it. I had taken time off for my injuries so I worked over Christmas and the New Year holiday period. Since I was unable to take my exams in October with everyone else, I had to take the deferred exam in late January. This meant finding some motivation to keep up with my work. Since I was so busy self-loathing I didn’t think I had it in me. Two days before the first exam, while being goosed up on Nurofin Plus, I thought about my partner and what I had watched him go through as he looked after me in the months prior. He had devoted all he had to me and I was all too conscious of that. It had frustrated me endlessly watching him do everything for us while I could not make any contribution. Despite all that had happened, he never gave up on me. I could do nothing about it while I was in plaster, but I knew it was up to me now. How could I face him again knowing that I had given up? I drew a breath, opened my books and two days later I sat the exams. It wasn’t the best result I’d had in my time at University, but I did manage to pass.
January 2007 - With my exams behind me I would spend the majority of 2007 passing. Instead of passing exams, I was passing time. The metal plates in my leg were necessary to heal the broken bones but the swelling in my ankle caused pinching and much discomfort. Despite the doctors at the trauma clinic telling me that physiotherapy wouldn’t be necessary, I decide that this meant that it wouldn’t hurt either so I set up some more appointments with Stretch. With the red spaghetti-looking bands gathering dust in the cupboard, it mainly comprised of heat treatment, massage and ultrasound.
June 2007 – I started new job. It was here and now that I was first inflicted with Uveitis. Uveitis, for those who are unaware, is inflammation of the eye. This will become relevant later.
Actually, technically that’s not correct. I recall one other time previously I had inflammation of the eye. I recall waking up one morning and feeling a bit of discomfort in my eye. Apparently my tear ducts had put in some heavy over time because a river of tears flowed from the eye the moment I opened it. It was extremely sore and extremely sensitive to light. I went to see Dr Flowers who referred me to an ophthalmologist. He treated the problem and that was the end of it. My problem is, is that I cannot recall when this time actually was. I seem to think that it happened either in 2004 or 2005. But I am not certain at all about that.
But let’s head back to 2007.
Since The Eye and Ear hospital is walking distance from work, I head up there for treatment. I am prescribed Homatropine, a pupil dilator and Prednisolone Acetate eye-drops for the inflammation. I dutifully take both and discover that Homatropine comes with the intensely irritating side effect of blurriness and light sensitivity. Homatropine is also a drug you can have enormous fun with. I discover that both children and other medical practitioners will look shocked and horrified when one pupil is obviously larger than the other. I also develop a greater appreciation for camera lenses.
Late October 2007 - Uveitis strikes again so back to The Eye and Ear Hospital I go. I am asked by the eye specialist several questions but I can tell though my repeating of the word “no’, there was nothing to suggest a cause. I am asked if I am stressed. Are you kidding??? There was no point telling him what had caused me stress, given that my broken leg and trauma was, by all appearances, irrelevant. But I did state an affirmative to the question. The conversation also brought about the realisation that, on both occasions, the Uveitis occurred within the month leading up to my exam period. “Stress can bring it on” I was told. I was also the underlying cause is often difficult, sometimes impossible to tell. I’m asked if I have any auto-immune issues. Again, “no” was my reply. The hospital orders a blood test which I did at the time in a treatment room. I was to learn that they were testing for the presence of the HLA B27 antigen. I was told I would be called if I came up with results that I needed to follow up on.
I am given another prescription for Homatropine and Prednisolone Acetate and I head back to work. I ask about the possibility of a repeat prescription but I am told that I wouldn’t be given one unless the cause was determined. The cause wasn’t determined. My test results were unremarkable and there was no presence of this H-something-something antigen thingy.
Early 2008 – It was now more often than not that my work colleagues would see me walking with a limp. It was also more often than not that I would spend the day in varying degrees of pain. My ankle was always swollen and hot to touch. But there was no point bitching about it. Overall, I started 2008 working hard and, despite my physical condition, my spirits a little above average compared to what they had been recently. I was happy to have a break from studying that lasted more than a few weeks.
I take on more St John duties and I push myself to run as often as my ankle allowed me which wasn’t all that often. I did this, to reclaim my life. I wanted to like feel the normal me. I hadn’t seen her in what felt like a very long while and I really really missed her. It would be accurate to say that in early 2008, the memories of the previous year were still very fresh in my mind. I decide to defer talking to Major Boots again and ask about my next operation.
June 2008 – Another exam period about to start, another Uveitis attack. Bah! Why does it always start in the morning after I get to work?! I can't be arsed going back to the Eye and Ear Hospital again, despite it being close to the office. My boss had been very understanding, but I still disliked the idea of telling her I was off yet again. I didn’t want to face the concerned look, nor the questions that would inevitably come from her. I did not have any answers.
Instead, I remembered that I had stashed the eye drops from my last visit in the fridge after I finished them. This was, in fact, against the doctor's advice which was to dispose of them once I had finished. I didn’t. I knew I’d get another attack and I kept them for that very reason. Do I recommend someone else do the same in my position? Absolutely not. Do I recommend to others that they pay attention to their practitioners and follow their advice pertaining to the use and non use of all drugs? Most definitely. There is no justification for what I did, really regardless of the reasons I use to justify my actions. And even knowing all of that, I confess I would probably do it again. Feel free to add ‘hypocrite’ to the list of my most unattractive attributes.
November 2008 - I was as ready as I was ever going to be ready. It was time to schedule my second surgery with Major Boots.
December 2008 – On the evening that my work colleagues were celebrating the imminent departure of yet another year at the staff Christmas party, I was at home goosed to the eyeballs on the highly regulated, highly restricted narcotic known as Oxycodone hydrochloride. I cannot deny it's euphoric effects. It's fucking brilliant!
The surgery had been performed a few hours earlier at St John of God Private Hospital. Major boots removed the metal and pins, he set about to repair the ligaments, the osteochondral defect and other damage that I caused 4 years earlier. I was to learn later, he shaved down several bone spurs that I had managed to grow.
My colleagues, bless them, had demanded messages from me when I was home telling them I was okay. Although I know that at least some of them were genuinely concerned for my welfare, I strongly suspect their insistence that I send such messages was more motivated by the desire to acquire audible evidence of my drug-fucked state for the purposes of bringing this up in future social situations. I can’t blame them. It is, after all, the Australian way. To acquire evidence about your work colleagues or friends can be used for the purposes of your own childish amusement and hilarity is a national pastime. We call this cheeky, boisterous behaviour, larrikinism.
It was around this time also I also started planning on a trip to the US for a wedding and I promply decided to turn it into an extended holiday. It would be 7 days in Baltimore where the wedding was to be held, followed by 7 days in South Carolina then finish with 14 days in the effervescent and delightful New York City, a city I have much love for. Finally, I had something really good to look forward to. I had no reason to believe that by the time the trip rolled around, my ankle would be in the best state it has been in years. I dared to entertain the thought of wearing a pair of heels to go with a lovely dress I wanted to wear at the wedding. It had been a while since I’d worn it and I looked forward to another opportunity to show it off. This particular dress was a favourite of mine and in doing so I was the recipient of some very positive and kind comments. I know its shallow, but every so often I like being showered in compliments. What girl doesn’t? At the end of the day, I like to look as good as I can and I like to be complimented when I get it right. This dress gets it right.
One reason the dress is so wonderful was that it was designed by the incredibly talented Alannah Hill who is easily my favourite Australian clothing designer. But there was other barrier in front of me. Since I stopped running, I had gained some much-detested flab. I was 68kg ( 150 lbs ). It probably doesn’t sound like a lot, but in someone who is 160cm ( 5 ft 3’) it doesn’t carry well and I had already replaced some of my clothes to fit my new bootylicious heinie.
Edit October 2012: This was the heaviest I ever was. I now carry a much more respectable 48-49kg, perfect for my frame, and my weight has been steady for over a year now.
It wasn’t just the lack of exercise that contributed to my situation. I had come to the conclusion in the not-too-distant-past that one thing I can do in order to help myself with my heath issues is make sure that if I did nothing else, I could make sure I eat right. I started eating three square meals a day. Not big meals mind you, just consistent meals comprising good food. Believe it or not, this was something I had never really done before. Even at the height of my swimming years I would generally eat two meals, not three and if anything, I was more of a grazer. I would always skip breakfast because I was many things, but I was never a breakfast person. I had been sold on the “breakfast is the most important meal of the day” theory. But the dress no longer fit, so I set about fixing this problem.
7 February 2008 – This is a dark date in the history of this country. It is Black Saturday, a day in which the temperature was in the mid 40s ( °c, approx 110-120°f), the northern wind howled, and Mother Nature delivered a firestorm which resulted in 173 people dead, over 2000 homes razed, and some country of the state’s most beautiful and picturesque suburbs such as Marysville and Flowerdale wiped off the map. It was also the day I was to see Major Boots for my post-operation review.
As I drove onto the Westgate Bridge, I looked towards to observe the city skyline. It was hot and windy. The sky I remember vividly. It was cloudy, with a dirty orange hue. I saw the sign of impending trouble.The Major is very pleased and sign-off the procedure and review as satisfactory. I look forward to the future with a renewed sense of optimism and had an extreme case of relief.
The Uveitis episodes increase with frequency. By end of year, I don't go anywhere without the eye drops. When they run out, I go back to the Eye and Ear hospital. They give me another script. They still cannot explain the cause so they won't give me a repeat prescription.
May 2009 – By this time, my left ankle is still very swollen but it was feeling good enough for me to take two pairs of shoes, a pair with enough of a heel for me to feel and one without. One of my many frustrations was around the fact that my ankle was so bad for so long, that even for a special occasion I would be forced to wear a pair of flats. I used to have lots and lots of high heeled shoes. Actually, strike that, I still owned lots of pairs of heeled shoes. I still do now. I have never had the heart to throw any of them away. In my mind, my ridding myself of them would mean I have given up on ever finding an answer to my pain. As much as it was hurting me and as depressed as I was from time to time, giving up was something I just couldn’t bring myself to do. I had tried to give up several times. I recall many conversations I had with myself over the past few years that I would have to accept things for what they were. I would never ever be the same. How could I be? I would probably always walk with a limp. I would always have a lot of pain. I would never run again. I would always have a swollen ankle. I would never again be able to wear high-heeled shoes. I told myself all of these things. I told myself to accept it and move on.
But I couldn’t. Throwing out all my high heels was not something I was willing to do as it symbolised my acceptance of my situation. I was never sure I ever would be able to do that.
Edit October 2012: I kept all my high-heeled shoes and in , have purchased several more pairs! I don't wear them daily, but I can wear them.
The weight had dropped back down to 57.5kg ( 127 lbs ) and the Alannah Hill dress just fit. I was off on a one-month holiday. All this contributed to my state of boundless enthusiasm.
I got Uveitis twice on the trip but I had my eye drops with me so it was able to be treated. I also walked all over NYC as I knew I would. It was here that I believed at the time, that I truly destroyed my ankle through all the walking. I recall one day in SoHo where a scale of 1 to 10 my pain ranked an 11 without effort. I limped for as long as I could and after I was back at the Hotel, I didn’t move. I didn't move until the end of the following day.
At the time, it was all about the trauma and a diagnosis was still almost two years in the future. Now, when I reflect on it, I know beyond a shadow of a doubt it was an arthritis flare-up. There was pain was sharp and intense like you stepped on a hot knife with every step. There was also the duller pain which was just always there. Always.
August 2009 - If January to May marks the time when things were on the up-n-up, then May to September marked the period where it all crashed. The pain was colossal. I started looking to my doctors for answers. As the months rolled on, I was to get more and more pissed off.
I went back to see The Major for an explanation first. He was shocked to see the extent of the swelling and was very concerned at the amount of heat I that was in there. I could tell he was confused and worried but at the same time, he had no explanation. He called other peers he often bangs heads together with over cases but it was evident my answer would not be here. That was the worst day in a long while for me. When I called and scheduled my appointment, I was very hopeful. After all, he was probably the best podiatrist surgeon in Melbourne. How could he not know? My fragile mental state was crushed when he had no answers for me.
Since I wanted an adjustment to my orthotics, I went to visit Boots. It was not an easy visit for me as I told him the events that had occurred since The Major had put me under. I struggled to fight tears talking to him about it all. He had no solutions either which I expected but he did suggest that perhaps I might consider seeing an Acupuncturist.
Now, before I go on, I must say that I have nothing against acupuncture. In fact, I am very much in favour for non-pill-based therapy and treatments because I know many of them work wonderfully well. I believe such medical practises can compliment western medicinal practice and should be studied and supported. That said, and I can’t tell you why, but I have never likes the thought of undergoing acupuncture. Every time I have, the mere thought of tiny bendy needles being inserted all over the place and leaving them there to bob away for a period of time makes me feel extremely nauseated and my blood pressure drops and I am dizzy and faint. I don’t know why I feel this way. I just do.
But desperate people will do desperate things and I felt I could lose nothing in giving it a go. While Boots didn’t think it would fix the problem permanently, he thought it might at least assist in managing the symptoms. He gives me a referral to Porcelain.
September 2009 – The thing I like about Porcelain is that in his waiting room, there is a 6 foot long fish tank full of goldfish, the animal symbolising an abundance of gold in Chinese culture. He took my history and said that after three treatments we would know if it would be worth continuing from there. I was comfortable with that.
To be honest, there was nothing besides the gold fish that I liked at all about my acupuncture experience, but I was happy I was, in the end, able to take the acupuncture treatment without entirely embarrassing myself. On my first visit, Porcelain told me to do was stop eating hot foods. He didn’t mean hot as in food that was of a warm temperature, rather he meant spicy. I was with him up until the moment he said Cinnamon was the hottest of all spices and I was to avoid it at all costs for the next month. He also told me to avoid battered and fried foods which were also considered to be spicy hot. I asked for more information or a reference that I could learn about this further at home, but I was told to simply stay away from them before being ushered out the door. I left completely confused and $50.00 poorer.
My second treatment, the following Saturday, was even less pleasant. There was a particular needle that caused quite a bit of discomfort in my left hand but when I mentioned this, Porcelain was adamant it should stay. A section spanning several inches on the top of my hand into my fingers would be numb for the next three weeks.
After the acupuncture session, Porcelain said he would do ‘heat treatment’. Before the acupuncture started he lit something that looked like an oversized joint I was told was incense. I thought nothing more of it. After the needles were removed, I remained lying down waiting for a heat bag to be applied or something along the lines of that. What I didn’t understand at that time was that heat treatment by Porcelain actually meant taking this large lit stogie and placing it as close to the skin as you can. Despite it not touching, you it burns and hurts a lot regardless. Now, please appreciate that I wasn’t expecting this at all! He didn’t tell me that’s what the incense was for and he did not tell me what he was about to do before he did it. Even I know at a First Aid level that, assuming your patient is conscious, before you do anything, you tell your patient exactly what you are planning to do. You must use clear and simple words they can understand. This is extremely important. Firstly, you need consent from your patient. Your patient needs to understand exactly what is about to happen to them before it happens. Secondly, to prevent one’s self from being ordered to front a formal justice process because your patent is making a claim against you for either unprofessional conduct or even worse, professional misconduct. I have seen myself first hand so I know all too well about what being in this situation can mean for health professionals. I’ve seen it destroy lives and careers of, sometimes, very well-meaning people. The fastest way down this path, is to have your patient surprised and startled over your treatment and putting into a state of stress. The importance of these issues is something I repeat to new St John members over and over and over again.
So, what do I think about Porcelain’s actions? It is interesting. On the consent issue, one can argue I gave consent. He told me he wanted to apply ‘heat treatment’ at the beginning of the visit before any treatment had actually occurred. I neither objected nor seemed bothered by it. This would satisfy the requirements of consent. But what ‘heat treatment’ actually meant in practise was a nasty surprise indeed and it did leave me quite shocked and in additional pain I didn’t have before treatment. I can definitely argue that while I consented to heat treatment I wasn’t in any way informed on the treatment process and could argue that had I known what he would do, I may have not given my consent. That’s classic unprofessional conduct. Since the treatment did not cause any burns and only short-term pain, it would be hard pressed to suggest professional misconduct. Also, I can’t say I blame Porcelain entirely for what happened. I know, as the patient, it’s my responsibility to ensure I ask all the questions I want to about my treatments before giving consent. Furthermore, I shouldn’t have assumed that the kind of heat treatment he was planning to do would be similar or the same heat treatment to which I am more familiar. After all, I was not in a Sports Physiotherapy clinic, but in a Chinese Medical Centre. It was a Chinese Medical Centre that came with a gold fish tank, where Chinese music heavily influenced with the five notes at the heart of Chinese music therapy would play throughout the clinic. In every room I was in, there was an abundance of Chinese symbols and cultural trinkets on display. I should not have assumed anything, but I confess that I did. As I have said hundreds of times, when you assume, you make an arse out you, not me.
Regardless of any of that, the acupuncture has made no difference at all. In fact, my condition was declining even further. It would be the last time I would see Porcelain.
December 2009 – A year before, I found myself in the role of Project Manager. It was a software replacement project in which the primary information system that was used where I worked would be re-written using updated technologies and would correctly reflect the business processes, something the current software failed miserably at and the poorly written beast was much hated amongst staff. Everyone would use this new system and because of this very fact alone, it very high-profile project. I took it as an opportunity to shamelessly showcase myself in the hope to push my career forward a few notches. In December, we were at the pointy end of the project and all of us involved were quite work-weary. As leader of the effort, all eyes were on me to deliver a successful outcome and my own expectations of myself and a successful outcome were higher than anyone else.
18th December 2009 – Days to Go-live = 1
I woke early, but not due to my obnoxiously-sounding bedside alarm. I woke with excruciating pain in my left hip that I've never felt before. Fuck! Fuck! Fuck! It was more intense than anything I’d ever felt before. I try getting out of bed only to realise I can stand up properly. I immediately ditch work for the day and head straight to Dr Flowers. He tried to tell me that I am not to work this weekend. I defiantly tell him otherwise. While Dr Flowers wasn’t convinced of knowing the cause, his brain had performed its calculations and lead him to suggest that based on probabilities, the chances are it was muscular. Dr Flowers prescribes Tramadol Hydrochloride, a powerful analgesic (opioid) used in a wide variety of purposes. I take two, head home and rest the day away as much as one can rest while in severe pain.
19th December 2009 – Days to Go-live = 0
Tramadol hydrochloride didn't relieve the pain but I was able to get some sleep and I was in the office at 9:30am. While I was in pain, if I sat still it was okay and I could at least do the work I had to do. What the Tramadol hydrochloride did do, was make me as high as a kite (remember it's an opioid) while doing my work and we were able to get through the software release process, and give ourselves congratulatory slaps. One of us got harder slaps than the others. One of us was in a worse state than any of us, including me. One of us was at a bucks night the previous night and was inflicted with the type of filthy hangover one expects one to feel when they turn up in track suit pants, thongs, a windcheater, an unkempt hairstyle, looking extraordinary pale and can do nothing but rest your head on your desk when you are between implementation tasks. The other four members of the Go-Live team, including myself, alternated between giving him our sympathy and encouragement, and giving him lots of shit about it.
I went home to continue my suffering on the couch until Monday when I headed back to Dr Flowers still in as much pain as I was on Friday and Saturday. Dr Flowers was unimpressed and showed it. He also had more avenues to explore. He asked me to try bombarding it with a large dose of Prednisone, a corticosteroid drug that is particularly effective as an immuno suppressant. I was to visit again in 72 hours. 24 hours later, my hip was 50% better. 48 hours later my hip was 90% better. Furthermore, and to my complete surprise, I had very little pain in my ankle. I was a grinning a goofy grin 72 hours later when I walked, perfectly upright, into the office of Dr Flowers. I was somewhat confused and then appalled that Dr Flowers wasn't the least impressed. ‘Don’t get excited, this may not be good news’
Um, wat?
Dr Flowers’ medical clinic was about to shut its doors that very evening and would be closed over Christmas. Furthermore, Dr Flowers was headed off out of Melbourne. While he was away, he wanted me under the close watch of someone else until he returned. I was told that while my response to the Prednisone might be a positive sign, the very fact that it was Prednisone that got rid of my symptoms may also tell of something that should be explored and needed attention. I went along with this plan without argument given I was not keen for the symptoms to return and I was to wean myself off the Prednisone over the coming week.
It was then Dr Flowers picked up the phone and called The General. After the call ended, I was told to continue the Prednisone, although in smaller doses, and I was given other advice for the Christmas and New Year period to get me though the main holiday period. I was given an appointment time to see The General when his own office would open again in the New Year. It was only after I left the clinic and looked at referral letter I was to give to The General did I discover that The General was a Rheumatologist.
I had cause to explore the need to go to Cabrini Hospital as demanded by Dr Flowers should I have any pain in my hip come Boxing day. It was 90% better than when it flared up in December but there was still that 10% part. Not wanting to make a fuss over 10%, and be deprived of $700 when I showed up at Cabrini’s private emergency department I paced around the lounge room thinking of Dr Flower’s instructions. In the end, I thought I’d call The Generals office. I didn’t expect him to pick up the phone, but I’d expected to get a recorded message and I was hoping, an emergency number to call that might lead me to a phone conversation.
I was surprised when he picked it up on the first ring. The General had been hoping a quiet office would allow him to get some uninterrupted work done. I had ruined that. I still feel bad about that. But The General soothed my worries, gave me some advice and told me that I was right to call. There was also no need to go to Cabrini. He would see me in January as planned.
January 2010 - I met with The General in the second week of January. We talked about the hip and the remarkable response to the Prednisone. It was largely better so in my own mind, the hip was still perceived by me as a one-off problem. But The General seemed to be as impressed as Dr Flowers and regardless of what I thought he went ahead and asked me an endless array of questions. He asked was I’d had any problems with my eyes. I told him about my regular outbursts of Uveitis. He asked if I'd ever been tested for the presence of gene HLA-B27. I reported my negative status. I also told him about my ankle woes and that I’d had improvement while on the Prednisone. To me, still, this was the bigger concern in my life.
In the middle of this conversation, I felt an elephant in the room. I posed the question to The General. ‘Do I have arthritis?’
‘Indeed you do’ was the reply.
He went on to say that all my health problems were a linked and simply a product of my condition. The hip, the flailing ankle and Uveitis were symptoms caused by my underlying condition.
I was less than convinced. Been there, heard this shit before, Buddy. Major Boots had indeed fixed the trauma in my ankle and I will be forever in his debt for that. However my subsequent disappointment when it turned sour, made it impossible to ignore my own scepticism. But out of respect for The General, I tried to hide it. He sounded convinced and being that he was keen to work with me in order to improve all my symptoms I was certainly willing to let him try. The first order of business was further tests. I had blood tests, an MRI scan on my left ankle, a CT scan on both hips and an x-ray on my back.
Late January 2010 – The CT scan and MRI turned up an abundant supply of effusions in many of my ankle and feet joints where I felt no symptoms. There were similar effusions in my hip joint. Effusions, for those that are unaware as I was, are an abnormally high amount of fluid build-up in a joint. It is a classic sign of arthritis. The blood tests confirmed a negative status for the rheumatoid factor (RhF) and HLA-B27. Despite being under the long term care of a chiropractor for some soreness I get in my lower back, my back showed no signs of the presence of arthritis.
The General saw several aspects to my condition he considers a positive sign and, generally speaking, mean a better prognosis for the long term. Firstly, my symptoms were restricted to the left side of my body and are not symmetric. Secondly, I came with a negative test result for the rheumatoid factor.
It was at that point, my arthritis was given a type. Undifferentiated seronegative spondylitis.
‘The next question is what do we do about it?’ The General said.
I listened to the three alternative treatments. Two oral treatments were discussed, as were Tumour Necrosis Factor (TFN) inhibitors.
I asked The General if he were me, which option he would choose. It was obvious that The General was having an amorous relationship with TFN inhibitors and lovingly emphasised their superiority over the other options. But there were also several reasons not to proceed with them at this point. Of the two oral treatments, one required ongoing monitoring for the entire time you are using it, and the other, Sulfasalazine. The General said, if he were me, he would probably choose Sulfasalazine. I liked the way he verbalised his thoughts and reasoning prowess on all three options before coming to his decision. I saw no reason not to follow him, despite the potential nastiness of Sulfasalazine. Sulfasalazine in the treatment of inflammatory arthritis can result in hepatotoxicity ( liver damage from the use of chemicals ), hence the need for close monitoring when you start using it. Any signs of problems and you must stop immediately. If you show no signs of hepatotoxicity you are unlikely ever to be troubled by its side effects and you can continue using it indefinitely without the need for regular monitoring. Given its oral administration, this makes it the most convenient option.
April 2010 - I see The General when the monitoring was complete. The General awarded my blood results the status of ‘unremarkable’ which was in fact, what we wanted. I reported no sign of side effects. When asked about how I am feeling, I offer ‘okay’ as my response. My ankle had improved from overall status in the previous year but to a lesser degree than when using the Prednisone. The hip had also stabilised but again, I could still feel some pain there. Some days were better than others but I had not returned to its severely distressing state like it was back in December. The General tells me that the drug takes many weeks to come up with its goods and I will get further gradual improvement as the coming months passed. However with no signs of problems, the signs are encouraging. I am scheduled for another appointment in four months’ time.
August 2010 – At this visit, I would tell The General that I could recall three specific times when my left hip had attempted to cripple me in an act of obvious petulance over the fact that I was subject it to medication in order to pacify it. In terms of severity, the flare ups were approximately half of what I had felt during the December flare up when my left hip had felt like it has doused itself in highly flammable material and set itself alight. Furthermore, on the last of these occasions my right hip had decided to join the picket line in a show of support for its grumpy-arse neighbour.
Where my ankle was concerned, things had improved. It felt much like it did in December and then again in January. In January, I had the pleasure of friends come from the USA on a two week trip before they would move into their new home, bought only weeks prior and start a family. I took two weeks leave from work in order to spend as much time as possible with our visitors. I had just commenced taking my new drugs so it had yet to take any effect. We spent one of the days in the first week at the Melbourne Zoo. This was a day my ankle was particularly painful that day and I was resigned to limping my way around the attractions doing my best not to let it show. My friends were showing obvious concern for my welfare and made no objection to ditching plans to walk around the Melbourne Aquarium in favour of heading back to the house. I was very pissed off and very frustrated. Not for a single moment more would I be a wet blanket, and knowing that there were no contraindications with Sulfasalazine, I have no reservation in self-medicating with Prednisone which I stashed away for safe keeping after I was weaned off it in December. I followed the same five day step-up/step-down schedule given to me back in December and I administered myself half the dose I was administered by Dr Flowers in December. Exactly as it happened in December, the ankle was much better the following day.
If The General reads this, I expect I will be in a little trouble next time I see him. I did not consult him before self-medicating with Prednisone and I know this is wrong. All I can say in my own defence is that made absolutely certain I checked for any contraindications. I knew the risks and I knew the benefits and I did not take this action lightly.
Edit October 2012: I know The General read this, but he never called me on self-mediating with Prednisone.
On Sulfasalazine, my ankle was feeling much the same as it was when I was taking the Prednisone. It gave up no resistance like the hip did and had accepted its fate willingly. I was pretty pleased with it. There are still problems that continue today. After the two traumas and two surgeries I don’t expect it will ever return to the way it was. However I am largely happy with it. In fact, I had only the week before my August visit to The General purchased and worn a pair of black heeled shoes. It wasn’t a very high heel as I would sometimes wear in my early 20s but it was high enough for me to feel a bit girly-girl if I wanted to.
The General didn’t like my report regarding my hip joints. According to The General, the body doesn’t react too kindly for prolonged inflammation to hip joints. I didn’t really want to know knowledge was behind such a statement so I didn’t ask, choosing to live in ignorant bliss a little while longer. It was then that The General put it to me that I would get the best results from Adalimumab and that the chances were good that I would qualify to be a participant in a clinical trial should I wish to give the drug a try. Given that I don’t qualify for Pharmaceutical Benefits making the drug as expensive as a privately-funded University degree would be, this is a perfect way to test my response to it.
Further conversation with The General would result in learning that is administered every two weeks via subcutaneous (under the skin) injection. It works by suppressing your immune system, making you at greater risk infections. Regardless, it was at the top of the totem pole in terms of a successful outcome and an increased chance of a better long term prognosis. Despite pages of documented risks, one of which was death, you could plainly see that for most of them, you were no more at risk than you were if you were not taking Adalimumab. I knew I would be subject to a level of care I nothing like I’d ever experienced in the past or probably would again in the future. My reasoning processes concluded no reason that I shouldn’t proceed. I tell The General would be pleased to add ‘human hamster’ to my list of applicable titles. The General sets the plan in motion. In a few days, I would be contacted by a nurse who worked at K, the research company running the trial. In this blog, I call her my Commanding Officer (CO).
A week later, I enter the headquarters of K for the first time as their newest recruit. My CO takes me though through the various details of the trial, does my Week 0 (baseline) assessments and assigns me as subject #3103.
