How I’m making progress with sarcoidosis during a difficult season

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure.” — Marianne Williamson, “A Return to Love”

Over the past few days, the negative impact of sarcoidosis has affected my emotions. It’s not uncommon for folks with this illness to feel lonely, absent, or even depressed. It’s rare I feel this way, but summer is hard for me, so I need to take some time to assess how I’m managing my feelings.

Eight years ago this August, I suffered my first spontaneous pneumothorax. The following May, I experienced my second. That June, I was hospitalized for an infection that resulted from the pneumothorax, and in July, I was admitted for crepitus that had spread throughout my chest, neck, and face. This time, I was intubated for a few days until the excess air in my body was gone.

Given these experiences, it’s no surprise that I often feel worried during the summer.

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Another issue is that the heat and humidity make breathing difficult for me. And it doesn’t help that air quality concerns here in Pennsylvania have kept me indoors more than I’d like. For the past few weeks, I haven’t been to the gym or my water rehab program. When I venture out, my trips are short and usually to somewhere with air conditioning. Humidity is not my friend.

I’ve had a lot going on over the past few months, and I need to do something different this summer. Regretting the past doesn’t contribute to my future, and worrying about the future robs me of today. I need to look deep inside myself and figure out what’s best for my progress today.

I deserve more than I’m giving myself

The first thing I’ll do is shut down my social media. I use Facebook to keep in contact with my older family members and old friends, but sometimes I feel a little uncomfortable viewing all the happy summer postings. I often think about past summer fun and all the things I used to do. I can’t do everything I once could, but I have memories and pictures, and I can still do enough for me.

That said, one thing I hate about this condition is feeling like I haven’t accomplished enough in my lifetime. I had an uncle who used to tell folks, “I’ve forgotten more than you know,” and that’s true for me, too. I’ve done a lot in my lifetime, and I have much more to do. Complacency is for suckers.

Sarcoidosis has many tricks that try to slow down my progress. It can steal my breath and make me tired of progressing in life. It can challenge my beliefs, convincing me that illness is all I have left. Living with sarcoidosis is a shell game. The challenges and obstacles are hidden under the shells, but the confidence and solutions are in plain sight.

So this summer, I plan on reading more and continuing my research into healthy living. I’m reflecting more on how blessed I’ve been for the past eight years. Although life has been challenging, I survived several close calls. I can say from firsthand experience that you never forget what a spontaneous pneumothorax or a chest tube feels like. You never forget what it’s like being intubated while you’re conscious or how people make you feel about the health challenges you face.

It’s a blessing to be an inspiration to many, but don’t forget how much of an inspiration you are to yourself.

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.