Sarcoidosis Is a Ticking Time Bomb

I stopped at a tire center this month to have one of the tires on my car checked. The small bubble on the sidewall didn’t seem like a big deal to me, but I was told it was a ticking time bomb that could blow at any moment.

That was an “Aha!” moment. Days earlier, I had struggled to explain to a close family friend what it meant to battle sarcoidosis. Ticking time bomb sums it up perfectly. That’s what it’s like to live with a disease that can attack my body anytime, anywhere.

A roulette wheel

Being diagnosed with sarcoidosis is like a spin of the roulette wheel. You hold your breath and wait to see where fate falls. Some get lucky and sarcoidosis disappears on its own without any treatment. Others, like me, are in a lengthy, wide-ranging battle. We try to anticipate where the next punch will land.

Sometimes we manage symptoms enough to carry on with life, which was my case for several years. But out of nowhere, a knockout punch connects. It happened to me in April 2011. I went home from work expecting a week or two of bed rest to get my health back on track. But I wouldn’t work again until April 2018. And my fight to work full time continues.

Baggage for life

Sarcoidosis is frustrating because it’s unpredictable and can be difficult to diagnose and manage. But it is also difficult to be told you are in remission when your body doesn’t seem to have gotten the memo.

Symptoms such as fatigue frequently persist in remission. It is not a fatigue that is cured by a few hours of sleep or a couple of cups of coffee. It can be downright debilitating, and it can be a long-lasting problem.

Sarcoidosis can fool some into thinking it’s gone, only to pop back up in a different area of the body. That was the case with one woman who relapsed after nine years. Worse, some may not have been in remission. Many relapses may represent instances of the disease being suppressed, according to a study published in the European Respiratory Journal that found it’s impossible to determine when the disease is in remission.

Forging ahead

For $249, I bought a tire and the peace of mind that I was no longer driving on a ticking time bomb. It’s not that easy with sarcoidosis, as I explained to the family friend I’ve called “aunt” my entire life. The best that we can do is forge ahead, hope for the best, and make the most of those days when we have the upper hand.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.