sarcoidNOsis

Here’s the thing about chronic illness, even one from which you’ve supposedly recovered.  It makes you paranoid.  Years of feeling like crap, of seemingly endless medical appointments, of ineffective treatments, and of adjusted lifestyle messes with your mind.  Ailments once dismissed as being “all in your head” eventually do get there.  You become overly cautious, worrying that the slightest change in the way you feel is a harbinger of a reinvigorated, or worse, evolved, disease.  You resist lauding the good days fearing that many more poor days could be but one rotation of the earth away.  You feel like a fool, the boogeyman that is hypochondria looming over you with only that long ago diagnosis to justify your hypervigilance.

This has been my life since I last wrote about my experience with sarcoidosis (and chronic fatigue) some three years ago. I’ve ignored the subject not because I was completely cured despite my cheeky assertions as such but because I was bored with grumbling about the same nebulous symptomology over and over again.  It wasn’t helpful to you and it certainly wasn’t helpful to me.  Sometimes the best way forward is to just shut up and put on a happy face.  Or in my case, a slightly less cynical one.

Besides, I was doing better.  Not “cured” better, but definitely better than at my worst.  I may not have liked where my life was forced to go during this decade and a half long battle but it certainly could have gone to much worse places.  I learned to compensate for my symptoms and was lucky enough to have a family support system around me that enabled me to comfortably do this without the crushing burden of having to hold a job and, well, sustain myself.

I may not have added to our coffers, but I was able to contribute as a father and husband all without triggering a relapse.  Extended family adventures continued to prove I could exert myself more than in the past, a small but welcome blessing.  I wasn’t a late-blooming athlete by any stretch but participating in fairly lengthy hikes and the odd late evening celebration felt revelatory after so many years of sloth.  And hey, I was in my mid-forties now anyway.  I was supposed to be getting slower.  Who was I to worry that sarc or CFS were at the root of any lingering foibles.

Still, concerns lingered.  Most notably in the winter months when daylight hours are shortest and precipitation tends to stick around in heavy, white blankets.  Snowy, winter days are beautiful, especially when you’re like me and have no job to lumber off to knowing that traffic and transit nightmares await.  Not that I was bereft of responsibilities and stayed indoors on such days.  I took some pride in shoveling our walks, patio, and the large area in front of our rear garage.  Often, I’d help out the neighbours by shoveling the entire length of sidewalk in front of our four homes.  This wasn’t a Herculean feat by any stretch, but it gave me a sense of value and I actually felt like I was exercising in a meaningful way for that half hour.  Small victories need savouring when poor health haunts you.

Despite the good vibrations these snow angel moments provided me, they also came with unease.  I would return to the comfy warmth of my home’s interior and immediately crash onto the sofa nearly gasping for air, a discomforting sensation pulsating in the centre of my chest.  These would pass in fairly short order but the remainder of the day would find me quite tired.  It had the hallmarks of what I experienced just prior to my eventual sarcoidosis diagnosis.  That was alarming, to say the least.

I had been declared “free” of sarcoidosis back in 2014.  This was done solely on the evidence of x-rays, lung function tests, and the fact that I no longer needed any meds to enjoy a relatively tolerable life.  I never believed I was cured but I did feel well enough to happily go about my life without regular follow-ups with my pulmonologist.  I was told to monitor my situation and if things changed, or worsened, I was to make an appointment and come back.  Two winters with shortness of breath and discomfort after shoveling snow was not only a bruise to my ego, it was definitely a sign that things had changed.  Despite my reluctance, I summoned the strength to book an appointment with my pulmonologist.  It was time to determine if my sarcoidosis was indeed back or, God forbid, something worse had begun.

A funny thing happened during those next few months.  My first appointment consisted of the usual checkup routine; x-rays, lung function, blood work.  All came back negative indicating that sarcoidosis had not, in fact, returned.  Good news, sure, though after so many years I wasn’t exactly elated.  The doctor suggested I undergo a CT scan once again just to be sure.

A PET scan is far more detailed and diagnostic than x-rays.  It’s also far more expensive and dangerous so I hadn’t had one, or anything similar, since the CT scan leading to my initial diagnosis back in 2008.  It too would come back negative for sarcoidosis.  Or anything else, for that matter.  Again, good news all around but nothing to explain the breathing issues when tending to my home.

The possible culprits were narrowing and, frankly, becoming more embarrassing.  My doctor suggested one final test just to see if there was perhaps lingering damage to my lungs from the sarcoidosis; a parting gift, if you will.  It would also help eliminate asthma.  This final test was a stress test on a stationary bike.  I had wires hooked up all over and an apparatus stuck onto my face to measure my breathing and whatnot all while maintaining a constant cycling pace against ever greater resistance.  It was like shoveling the entire sidewalk with a face-hugger from Alien clamped on and a band of muggers chasing me.  Good times!

I honestly don’t remember how long it lasted.  Eight minutes maybe?  Twelve?  Whatever the reality, it felt like hours and I was nearly in tears by the end.  In fact, I think the only thing that kept me from crying was the fact that I had already sweated away ever free water molecule in my body!  I was exhausted but the nurses who ran the test said I did good, so I tried real hard not to whimper, faint, or accidentally void my bowels despite all three being readily available to me at that moment.

The result of my cycle stress test was, how shall I say this, deflating.  It re-affirmed what the PET scan had emphatically stated and also eliminated asthma as a possibility.  This was good.  I should have been delighted.  What the cycle stress test did show, however, that I was quite literally out-of-shape.  I was a fat slob with no aerobic fitness whatsoever.  Who knew doing nothing for sixteen years to avoid the ravages of CFS and Sarcoidosis would leave a person in poor physical condition?  It boggles the mind.

Today saw the first snowfall of 2018.  It was a good half foot of snow (so far) with the bottom portion heavy and wet thanks to the still warm concrete beneath.  I was out there in snow gear shoveling at 7:00 am.  I wanted the school kids and office jockeys to have a clear path for at least part of their journey.  I even did the neighbours’ walks.  Afterwards, I felt … okay?

Oh, it was tiring.  But I didn’t pause to catch my breath or return to the house gasping for air.  I was a bit winded and my arms are shaky.  Not the greatest feeling in the world, but better than panicking over a return of sarcoidosis.  Besides, it’s been half a year since I did work like this.  I’m out-of-shape!  It’ll take a while to return to fit form, a point the jogger who ran past me as I shoveled inadvertently emphasized.

Losing 30 pounds over the summer was a terrific start.  If I can slowly, cautiously, (paranoidally?) increase my activity perhaps I can improve my aerobic fitness without triggering a dreaded relapse.  I wish to be healthier, but I don’t want to lay out the welcome mat for sarcoidosis or exacerbate the chronic fatigue.  Nor do I wish to drop dead of a heart attack.  I need to be fit, as best I can, despite lingering symptoms.

Ah.  I see the snow has stopped.  Time to go shovel again.