So far 2018 has been a physical challenge for me.
The year got off to an inauspicious start. On January 10, while I was riding my bicycle, I felt a sudden pain in my left knee. It subsided for the rest of the ride, but over the next day it became apparent that something wasn’t right when I bent my leg.
You may wonder–how could someone injure a knee peddling a bicycle? It’s a non-impact motion. But in 2016 I fractured upper tibia, near the knee. Moreover, due to long-term glucocorticoid use, my bone density is below average (osteopenia). I’m more prone to get bone fractures. The discomfort I felt was reminiscent of that previous injury.
So, to be prudent, I decided to keep weight off my left leg. I used crutches and a knee brace. My knee started feeling better. After a couple weeks of “rest,” it felt solid enough that I shed the crutches for a couple days.
Bad call. I re-aggravated it either through overuse or by carrying extra weight. It felt worse than before. I resumed using crutches/knee brace and finally made an appointment to see the orthopedic doctor. The knee felt so fragile I was worried there was a crack and I’d need surgery to fix it.
Surprisingly, at two exams (first using X-ray, then an MRI) the doctor didn’t find any fractures. My knee was basically intact (the MRI did reveal a tear in my meniscus, but this alone could not have been the cause of my discomfort).
I was relieved to learn that my knee was “okay.” But the good fortunate I felt from my positive diagnosis soon evaporated in the face of my greater nemesis: rheumatoid arthritis (RA).
Although my knee movement continued to improve, the swelling did not go away. To the contrary, system-wide, my joint inflammation was getting worse. Why? Because the Enbrel I was taking to combat RA was losing its effectiveness.
At my rheumatologist appointment on February 22, we decided to stop the Enbrel treatments and try a different bioloic drug, ACTEMRA. It’s now been almost six weeks since I started taking Actemra and I have yet to see much of a reduction in inflammation. Typically, in patients where the drug does work, symptoms improve in 2 – 12 weeks. So the jury is still out on whether it will help me.
In the meantime, I’ve been relying on ~20-25 m.g. of prednisone (per day) to maintain my joint flexibility. It’s not a great option–the drug carries a host of side effects. I’ve gained weight, become moodier, more easily frustrated, and can’t sleep for more than a few hours at a time. It’s disconcerting to be wide awake after only two or three hours of rest. I’m operating on about half the sleep I was getting in the fall.
But by far the biggest problem I’ve had in the last month is the emergence of painful hip flair ups. I’ve had roughly ten episodes, mostly at night. My rheumatologist said they may be palindromic rheumatism. They have a distinctly different character from my normal RA joint inflammation.
A full-bore attack is rapid and debilitating. In the span of six hours, I’ve gone from normal walking to barely being able to move with crutches. The pain is brutal and I lose my ability to move the affected leg. It takes all the willpower I’ve got just to get in and out of bed. When it hits, all I’m able to do is find the least painful position possible and wait for the drugs to start providing relief (two hours+). I recommend avoiding this experience, if at all possible.
Not every day in the past month has been bad. There are hopeful signs. The “palindromic rheumatisms” are less frequent than they were. After a two-month hiatus, I’ve resumed bicycling and have done several rides in the last three weeks. A few days I’ve almost felt “normal” again. And then, the next day, I don’t. The uncertainty of not knowing what I’ll be able to do from one day to the next takes a toll.
Which brings me to the psychological challenge this presents. At times mental obstacles are more daunting than the physical ones. The biggest trap I fall into begins when I start to compare myself to other people. This thinking leads to the inevitable human response: Why me? I live a lot more healthfully than many other people. I have a good diet, I exercise, I don’t smoke, I don’t drink, none of my close relatives have rheumatoid arthritis. What did I do to deserve this?
It’s pointless question. There’s no medical explanation for why I have this disease. No one knows why. I might as well just view it as bad luck. Moreover, even if I could divine an explanation, it wouldn’t change my well being–I’d still have the disease.
It’s much more productive to focus on what I can affect. The Greek Stoic philosopher Epictetus wrote:
We should always be asking ourselves: “Is this something that is, or is not, in my control?”
Beyond seeing a doctor and taking drugs, I have little, if any control, over the disease itself. Some days I can barely control the symptoms. All I can really control is how I react to them.
That being the case, the best response for me is to accept the disease, and its limitations, as matter-of-factly as possible. When the symptoms aren’t being managed or are behaving erratically, I must adapt daily to overcome any problems they present.
To illustrate this in practice, here’s an example from last week. On Wednesday I attended a seminar at the law school. I parked several blocks away, where it’s free. Due to procrastination and traffic, I reached campus later than I should have (something I could control with better planning). My hip was recovering from an aforementioned “palindromic rheumatism,” so my walking was slow and labored (something I couldn’t control).
In short, I couldn’t walk fast enough to make it to the meeting on time. I caught myself becoming aggravated at how long it took me to climb the hill, how haltingly I went down the other side, and how I could only go up the stairs one step at a time (my attitude, which I do control). As I limped along, some students passed me. I had to stop myself from wistfully thinking about how I, too, once rushed about campus between classes (a change I can’t control).
Comparing my walk to that of others, or my healthy self, doesn’t get me to my destination any faster. Nor does it improve my mood–to the contrary, it’s depressing.
All I can constructively do is to keep pushing forward, at whatever speed is possible. Some days it will be faster, some days it will be slower. Such is the ebb and flow of life. We each march to the beat of our own rhythm, as we journey along our unique path.
This isn’t an easy lesson to learn, but it’s one I must master to maintain my equanimity.