There is a strength in proving that it can be borne
Although it tear —

What are the sinews of cordage for
Except to bear

The ship might be of satin had it not to fight —
To walk on seas requires cedar feet

~Emily Dickinson – There is a Strength in Proving~

It ended in the same way it had started. Eighteen months before I had randomly bumped into my rheumatologist at my doctor’s surgery. On that occasion I had been feeling incredibly unwell and even more stressed. I had just been diagnosed with bilateral pulmonary emboli a week after starting treatment for Immune Mediated Necrotising Myositis. Having the opportunity to talk to my rheumatologist gave me the peace of mind I needed simply from knowing that he knew what had happened. He could then stress about what to do next, and not me!

This time it was the opposite scenario. It was while we were on our way out of Bunnings that I passed my rheumatologist and his wife just leaving the checkout. This time I wasn’t the one who needed the reassurance. Maybe this time it was my rheumatologist who needed to know that I was going to be OK.

At my appointment twelve days before my rheumatologist had initially seemed slightly annoyed, muttering something about getting the letter from my General Practitioner, but obviously I had been the one making the decisions about my treatment. My General Practitioner and I had jointly decided to increase my Myfortic after getting the all-clear from my Infectious Diseases Specialist. At that time I had already had ten weeks of weakness, and it would take many more weeks for my increase in medication to take effect. Two months before, my rheumatologist had categorically stated that my recurrence of weakness could not possibly be due to my myositis. It had seemed nigh on impossible to convince him that it was.

I had already decided that I needed to be calm and rational at my appointment, making a concerted effort not to be sarcastic or cranky. Instead I asked if I could tell him my story. As his job is to take a medical history, do a physical examination, and then make a clinical decision, this was a request he could not reasonably refuse. I succinctly relayed the timeline of my four months of weakness and muscular pain. At the end of it he could at least see the logic of my rationale, though he may not have understood the pathophysiology of my disease. He now understood why I couldn’t wait four months before I tried to convince him to treat me more aggressively.

He made no further comment on my Myfortic dose, except to say it should only have taken four weeks for the change in dose to become effective. He did assert that maybe my IVIGs had stopped working. I countered that with the information that they did work for one week so they were obviously doing something…they just weren’t enough on their own.

He then said that someone…I have no idea who…thought he was over-treating me by giving me Immunoglobulins. All year he had been talking about decreasing my dose. Maybe most patients could reduce their dose, but my myositis had always seemed just barely under control. I always had onset of significant weakness just before each four-weekly dose of Immunoglobulins.

He agreed, somewhat doubtfully, to attempt to order a repeat induction dose of IVIGs…a double dose in one month. I assured him that Professor Needham, Australia’s leading myositis expert, had told me it was easy. My rheumatologist did the online application, and the infusion centre rang me on Monday morning to inform me it had been approved. I already had an extra appointment booked in anticipation that it would be.

However, my rheumatologist was confused. He had no logical explanation for either my weakness or my muscular pain. He couldn’t see how my weakness could fluctuate so rapidly. Surely my disease resulted in muscle destruction, which would then take months to build up again. Instead, I could go from easily walking a kilometre to struggling to walk around the house over a period of 48 hours. This would then be reversed after my IVIGs with rapid improvement in movement and endurance.

My pain also made no sense. Surely my pain was due to muscle inflammation and destruction, which would then cause an elevated CK. My CK remained stubbornly normal despite pain so severe that I struggled to get dressed, was unable to drive, and sleep often eluded me due to being unable to put any pressure on the muscles of my upper arms. Any time I attempted to use those muscles, they would stab me like a knife.

I hypothesised that a disease process was causing muscle pain and paralysis before the onset of muscle destruction. A paper stated that, in some people and at some stages of disease, paralysis occurs, though the actual mechanism was still to be delineated.

My rheumatologist was fast losing his confidence in his ability to treat me, and told me that I needed to get a second opinion from a neurologist. Not only that, but it was probably better that the neurologist take over my care. He was just a country rheumatologist. A Brisbane doctor should (hopefully) know more than him.

I doubted if that would actually be the case. As far as I was concerned, my rheumatologist had given me cutting-edge management of my rare and confusing disease. But I could see his point of view. There was also the fact that maybe he didn’t trust me, after I had increased my Myfortic despite his assertion that my weakness had nothing to do with my myositis.

The following day I struggled with feeling like I had been fired as a patient, but was still aware that the decisions my General Practitioner and I made were the correct ones. Four months of being incredibly weak were long enough. I still felt like a failure, which was probably just due to my perfectionist tendencies and my dislike of people being displeased with me.

Two days after this appointment, and five days before my IVIGs, my muscle strength suddenly returned. It could only be due to my Myfortic kicking in…doing whatever magic it did to my immune system.

I was now walking 5000 steps a day and was well able to walk the never-ending aisles of Bunnings. I was almost certainly a bit manic…just for the exhilaration of being able to get out of the house! Gleefully, I informed my rheumatologist about my newfound ability to walk and my hope that I might eventually work again… though, if not, I would still be OK. I didn’t want him to worry about me.

He agreed that the Myfortic was now starting to work. He had expected improvement after one month but instead it had taken two months. I shrugged and said nobody really knows anything about this disease. It is all a matter of time and patience… waiting to see the effect of each medication change over many months.

He also asked whether I had an appointment to see the neurologist yet and hoped he would see me quickly. It was then that I realised he was still worried about me… maybe more worried than I was. I still had hope that my Myfortic and induction dose of IVIGs would work to send my disease scuttling back into remission. He had less hope and was concerned that I had a second disease process that still needed to be addressed.

Seeing his care and concern helped me to be less stressed about being a difficult patient. He could see my point of view and, even if initially annoyed, hadn’t judged me. I may never see him as a patient again, but at least I no longer felt like I wasn’t seen or heard. Our brief interaction outside of Bunnings had given me peace.

Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”

Joshua 1:9