Month: October 2019

Halloween week and the red-blood-cell scare

Posted on Posted in autoimmunity, existentialismTagged , , , , , , , , , , ,

Horror films with homicidal clowns and chainsaw-wielding serial killers define Halloween for most. But for me, with my health issues, little is more frightening than an abnormal medical test: This week, red blood cells showed up in my urine.

What exactly this means is any doctor’s educated guess. The urologist ordered ultrasounds of my kidneys and testicles, but since I have to wait a week for them, I’m obviously not dying. He also wants to shove a catheter up my urethra with a camera to check my bladder. Fuck that.

Best case scenario, red blood cells in my urine are just that. Maybe I worked out too hard Monday night before the test. Maybe my prostatitis from three years ago flared up.

Worst case scenario, I have kidney disease or cancer. I’m trying not to focus on this because I’ve had my blood tested so many times the last year, doctors would have likely seen something earlier.

Waiting, yet again

Nonetheless, waiting for test results, yet again, sucks. My heart pounds. My mind wanders. My own House episode continues.

I wonder what a couple tests mean for the rest of my life. Is my autoimmune condition destroying my kidneys? Are my medications to treat it affecting my kidney or bladder function? Is this just a fleeting result with little consequence after this week ends? Is my anxiety for naught?

Yet again, I wrestle with existence, with the purpose of life amid a universe that so often seems to bring only suffering. Sure, I’m not alone. I have coworkers with their own autoimmune conditions. I have Facebook buddies with diseases rarer than my own. I even have a good friend struggling with a much more daunting medical issue and awaiting his own prognosis this week. Clearly, the universe does not discriminate.

But are we, as humans, really meant only to survive? What of happiness? Can we really ever flourish when each day brings a new anxiety of its own, when life becomes a series of test results and visits to specialist after specialist, each one delivering another worry, another reason to fret?

Ancient wisdom for the diagnostic life

Western religions teach us not to worry. Christ tends to his flock. Yahweh watches his people. Allah blesses those who believe. Good triumphs over evil. God provides. But what comfort is heaven when you’re trapped in diagnostic purgatory, hoping you don’t end up in oncological hell?

The Stoics teach us to seize the day as it comes, to immerse ourselves in the moment.

“True happiness,” writes Seneca, “is to enjoy the present without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied, for he that is wants nothing.”

Such advice is all fine and well for the healthy, even for the unhappy or the unemployed. But those ancient words ring hollow when “he that is” cannot be.

Rough weeknights and coping with chronic fatigue

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, inspiration, symptoms, writingTagged , , , , , ,

Chronic fatigue has made weeknights rough lately. Despite ritualistic adherence to my azathioprine and hydroxychloroquine, my autoimmune disease zaps my physical and mental strength before the day ends. The moment my right foot crosses the threshold into our condo, I want to collapse.

Eight-hour workdays leave me feeling like I spent them picking anthracite from the walls of an Appalachian coal mine. My muscles feel like they’re sagging—even though I have gained strength. I gulp ultra-caffeinated preworkout energy boosters to start and finish my days.

Sports injuries have forced me to cut back on gym sessions. Between plantar fasciitis in both feet and extensor tendonitis in my right foot, I’m surprised I can stand. And of course, my inflamed lower spine aches and causes me to slouch.

Admittedly, some of this will get better. Sports injuries can be avoided with proper stretching and icing. I have scheduled monthly massages to repair my muscles and soothe my spine. And I’m only three months into a new job—every day feels like a full load of college classes, everything a lesson.

But for those like me with an overactive immune system, feeling tired and stressed can easily escalate to feeling exhausted and overwhelmed. Since stopping steroids in August, I feel like I’m walking through life perpetually sick, minus the drippy nose and sore throat.

I sometimes feel demotivated and depressed despite being otherwise happy with myself and my life. I can’t concentrate enough to read. I don’t have much energy to write or play guitar. I’m embarrassed to admit it took two hours over two evenings to pen even this.

I finished the latest seasons of Netflix’s best shows (Lucifer, Sex Education, and Derry Girls) months ago. Amazon Originals have never held my interest. The NFL airs the least exciting games of the season on weeknights. I have no energy or focus to start my Disneyland-ride-long cue of Great Courses lectures.

Nonetheless, I’m trying to stay positive. I’m trying to meet my goals. I’m trying to reignite my passion to write. I don’t want to make life one long binge watch.

I recall all the great things that have happened since this disease began—a new condo, a new job, a new guitar, another year with my girlfriend. I even earned the next certification level for proposal management. Come to think of it, while these summer months have been a drag, I’ve actually accomplished a lot in the last 18 months. I just wonder, as I did months ago, how much of it was me, how much was the prednisone. Has chronic fatigue become my new normal?