Hope Carries Me Through Chronic Disease Challenges 

Hope Carries Me Through Chronic Disease Challenges 
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I went to bed in the fourth quarter of “Monday Night Football” with my brother Antony’s words haunting me. My favorite team was losing, and I knew what he’d say about abandoning them for sleep: “There’s a lot of game left.”

Antony believes in comebacks, and so do I, particularly when it comes to sarcoidosis.

I woke up the next morning wondering if I had missed a glorious comeback by the New Orleans Saints. That’s the risk with bailing early. I’ve watched my brother, his forehead crinkled and eyes tight with concentration, believing in wins. Not even being down three touchdowns with less than five minutes remaining shakes his resolve that “his” Pittsburgh Steelers will prevail.

Sitting on his cushy couch in Florida, which was a winter escape for my achy joints, I remember him telling me once, “I don’t know how you do it.” After rebounding from Lyme disease, my journey with sarcoidosis began the next year. To him, it was like I was shouldering all of the health issues our family had escaped. Just like my brother clings to hope until the game clock runs out, I get by clinging to hope, too. 

Athena’s brother Antony, a Pittsburgh Steelers fan, accompanies her to a game between the New Orleans Saints and the Tampa Bay Buccaneers in late 2018. He even wore a Saints jersey! (Courtesy of Antony Merritt)

Sarcoidosis is an inflammatory disease that can pop up anywhere in our bodies. More than half of us are dealing with a trio of symptoms that have been “historically unrecognized consequences” of this rare illness. These include: 

  • fatigue (70–80%) 
  • small-fiber neuropathy (30%)
  • cognitive impairment (35%) 

That’s according to the study “Disease Burden and Variability in Sarcoidosis,” published in the journal Annals of the American Thoracic Society in 2017.

So what do we do? We push on. We multitask. We have to because we face unpredictable days.

We manage life around our symptoms. Many, like me, have become adept at cramming errands in before fatigue conquers us. 

We are resourceful. Cognitive impairment, small fiber neuropathy, and debilitating exhaustion aren’t visible, but they are among the many unseen challenges we regularly face. We squeeze responsibilities into doable chunks and keep on. 

We find ways to overcome our fears, worries, and insecurities.

Googling the Saints, I wondered if they had pulled off a win after all. They hadn’t. But that’s OK. I’ll be back, well-rested and watching on Sunday, full of hope. 

***

Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

  • Penny for your art: For artist Bryanna Maria, a 19-millimeter-wide canvas will do just fine. The self-proclaimed minimalist creates intricate oil paintings of landscapes on the back of pennies, Caters News Agency reported. You can check out and buy her awe-inspiring works at brymariearts.com.
  • Autumn leaves: SmokyMountains.com has created an interactive map to help travelers catch the peak color of fall leaves in the U.S. Prime leaf-peeping spots in New Hampshire, Colorado, Pennsylvania, and other areas can also be viewed live online, according to Mental Floss, which offers a list of webcams.

***

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, and are intended to spark discussion about issues pertaining to sarcoidosis.

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