Staying Honest and Motivated While Living With Sarcoidosis

Let’s be honest …

Ok, I’ll be honest. I’ve found that being honest with myself seems to do me a world of good. And I don’t mind being honest with others about my health, but I often find their interest in my honesty is superficial. I think many are just being cordial when they ask me how I’m doing.

I get it, people have their own lives to live and their own battles to fight. But if you’re like me, you’ve learned who’s genuine and who’s not. 

The fall season is upon us, and I couldn’t be happier! It’s my favorite season, when the weather is cooler, the people seem to be nicer, and I can breathe crisp air without a mask. It’s also a time I love being outdoors just enjoying life and all I have left to give of myself — to all who would appreciate me!

I look at fall as somewhat of a rebirth for me, like starting over. New Year’s Eve celebrations are for amateurs or ordinary folks wanting to feel special. I’m a special guy, which is why I can celebrate change during a calendar year — even during a pandemic.

In 2017, I was overly excited when I came home from the hospital in late September. After spending two months there, I couldn’t wait for the fall and all it had to offer me. I prepared myself to make a clean attempt at doing better for myself.

As usual, life got in the way. When you’re living with a condition like sarcoidosis, you’re constantly balancing between your life and living. Thankfully, you can strike a balance between the two.

Slow and steady wins the race

At this time of year, I tend to take my time more, so that I can fully enjoy the season and the weather. Unfortunately, taking my time and being more patient with myself don’t seem to agree with some people.

As a sarcoidosis survivor, I tend to take deliberate steps in my daily living. But taking deliberate steps with my health and the way I choose to live causes some people to become frustrated or impatient with me. I notice this with some friends and family members who seem to think that I rely on my health as an excuse. It’s unfortunate for them that they don’t understand. I really hope they’re never in a position to have to deal with compromising health issues.

I loved to walk at this time of year. Losing my last two jobs afforded me the time I needed to regroup. I used to walk at least 2 miles a day, and I’d often walk when I had my dog. I called him my rehab doggie because he helped me recover a sense of normalcy each time I came home from the hospital.

I also was a member at the local Salvation Army Kroc Center, where I would swim at least twice a week. On days I didn’t walk or swim, I’d ride my bike somewhere within the 1,800 acres of Philadelphia’s Wissahickon Valley Park, or along MLK Drive, which the city shuts down on weekends for cyclists and joggers. 

All that changed in 2017, when pulmonary sarcoidosis robbed me of that freedom.

A view from “The Plateau,” near Philadelphia’s MLK Drive. (Photo by Charlton Harris)

Every day is still an adventure

Although things have changed for me physically and mentally, I’m still the same person. I still enjoy walking, although now I do it in a controlled environment using oxygen. I try to mirror the exercises I learned in pulmonary rehab to keep my body strong. All of my doctors and therapists, past and present, have clearly expressed that anyone dealing with pulmonary issues should try to keep their body moving. The way I look at it, I keep moving to stay motivated.

There are a few things I can’t do like I used to, and I’m cool with that. While I haven’t fully conceded that I can’t, I’ve resolved that I can at my own pace. Sometimes you have to slow your roll without giving up.

I miss not working in my field, as well as swimming, biking, walking, and my doggie, but the bigger picture is now I have time to concentrate on myself. If this adventure changes again, I’ll adapt in my own way again. Most importantly, I won’t quit. I gotta keep living.

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