Dealing with Dis-ease

In January of 2017, just shy of my 36th birthday I was diagnosed with osteoporosis. Conventionally, a diagnosis of osteoporosis is determined by a DEXA scan, which assesses, among other things, one’s Bone Mineral Density (BMD). If you have a T score below -2.5 you are said to have osteoporosis. 

Usually, they will measure a few key parts of the body to assess BMD. Typically, it is the lumbar spine and the hip; often, the forearm is included as well. My T score left me with a diagnosis of osteoporosis in my lumbar spine and forearm, and “osteopeonia,” basically low BMD, in my hip. 

Given my age, I was shocked. Above all, I was scared…frightened less of the reality that I was facing in the present, because my attention did not linger in the present for too long, but rather fearful of an imaginary future, the disturbing contours of which my mind was rapidly constructing. 

As the mind often does when it builds a picture of the future, it drew on memories from the past, and my past was filled with ammunition to make me particularly terrified of such a diagnosis. 

I recalled images of my childhood, watching my father have one vertebrate after the next blow out, leaving a man who was an active outdoorsman, full of vigor and life, largely incapacitated and unable to pursue the passions and hobbies that gave him joy.

Though my father had degenerative disk disease, and only later had osteoporosis which undoubtedly exacerbated but did not cause his condition, this knowledge offered little consolation. It was the association my mind latched onto. Even now, understanding the distinction between his situation and my own, the specter of this image still haunts me.  

Yet here’s the bizarre thing about even the most shocking of medical diagnoses: the mind has a powerful capacity for cognitive dissonance.

This is the story I told myself: 

My condition could only be explained by prolonged use of Proton Pump Inhibitors (PPIs), such as Nexium and Prilosec, which I used to treat my acid reflux, from the time I was in my late teens. 

I will write more on PPIs in another blog post but I’ll cut to the chase right now: if you are taking PPIs, stop taking them

[It turns out that you need stomach acid, that long term use of PPIs can significantly put you at risk for osteoporosis and increase your chances for a fracture. PPIs can also lead to other digestive problems, as you need stomach acid to break down food and absorb essential nutrients, including calcium. There are other, more effective ways to treat acid reflux.]

Clearly, I surmised, what else could explain osteoporosis in someone my age if it weren’t for the PPIs? So I stopped taking the PPIs immediately. I started some relevant supplementation, in particular increasing my levels of Vitamin D. 

In retrospect though, my efforts seem paltry. I stopped far short of asking questions, and was not nearly aggressive enough in my treatment strategy. Underpinning this complacency was the assumption that surely my problems could be explained by a single variable, and the removal of this variable from the equation would gradually improve my condition. 

When I went back for my follow up scan nearly two years later I was hoping for at least a modest improvement in my BMD, thinking that a bad case scenario would be no improvement. In retrospect, it seems incredibly naive, but my mind had not even seriously entertained the possibility that my condition could have worsened. Without the PPIs, given my otherwise very healthy diet and lifestyle, what else could have explained my initial diagnosis? Surely, my condition would improve, if not hold stable. 

Or so I thought.

While there are many things I would have done differently following that initial diagnosis, the biggest thing I want to share with other people is this: do not make assumptions about what is causing your condition, whatever you might be facing. 

Do not accept the first opinion of your doctor no matter how good. You need to be persistent and relentless in getting to the bottom of what’s ailing you. As I’m now discovering, this often entails a process of elimination before you can even begin to hone in on a set of plausible explanations for what might be underlying your problems.

This is the position in which I now find myself, and this is one of the central dilemmas that I find myself facing: how to manage The Fear?

Fear: we can respond to respond to it in so many different ways. Denial is one. Determination is another. It didn’t take too many days after my second diagnosis to transition me from this first phase to the second one.

I can honestly say that I don’t spend a day, even a minute, regretting how I spent the last two years, not because I wouldn’t have done things differently (clearly, I would have), but simply because regretting the past is simply a waste of precious mental bandwidth I need to solve my problem, to reverse my condition. 

Right now there is only conceivable outcome in my mind, one possible end to this story: changing these circumstances. Not managing it, Not learning to live with it. But reversing it. Overcoming it. Triumph.

Sometimes acceptance means learning to live with your condition, and undoubtedly one day, whether it is this disease or another one that I meet on the way to my ultimate demise, that will clearly be a worthwhile mindset to embrace. 

But I’m not there yet. I’m not ready to entertain the current set of conventional treatment options with their predictable prescription drugs and typical litany of caveats and side effects, the inevitable outcome of a reductionist approach to medicine that focuses only on treating the symptoms, not addressing the underlying cause and restoring the imbalance of an integrated mind-body system. 

Right now I’m focused on one thing: re writing my story. Through this process I hope to learn a few things that will enable me to help others lighten their load on the healing journey as well. 

In the meantime, I’m trying to savor the small things more, to deepen my gratitude and appreciation for all of the things I can now do, with the heightened awareness that one day, whether in one year or in many years down the line, I will be unable to participate in not only the things that I love, but in all of the little things that I too often take for granted.

Every day I’m making anew the conscious decision to allow hope, not fear, to be the guiding force in my life.

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