Sarcoidosis Struggles Strengthen One’s Character

Just like that, the last week of summer is here. Woo-hoo, I made it! 

I admit I have been waiting for this moment, yet feeling sad that the last week of summer is upon us. It’s Labor Day weekend in the U.S., and life as we know it will resume with a sense of normalcy — if there is such a thing. 

As I like to tell people, especially those living with pulmonary sarcoidosis, every day is a new adventure, especially during the summer months. The heat and humidity keep us indoors and stagnant.

I was listening to the evening news and the weather forecaster mentioned that this summer Philadelphia had five separate heat waves, which are defined as three consecutive days with temperatures reaching 90 degrees or more. Needless to say, those were some very “adventurous” days, especially for folks like me who have breathing issues. 

Finally, a summer to enjoy 

It’s been about three years since I had an enjoyable summer. I spent the last two summers in the hospital due to two spontaneous pneumothorax episodes and other medical issues. During that time, I had several conversations with my pulmonologist about alternative treatments that could benefit me.

I told my doctor I wanted one summer to relax and enjoy my family and friends. Being the cool doctor that he is, he agreed, and we decided I would see him more frequently during the summer months to ensure that all was well with my healing and rehabilitation.

It was important for me to see whether all the work done to me benefited my health. That might  sound crazy, but why not? Believing in yourself may be all the encouragement you need to move ahead with your health and your rehabilitation.

I’ve always been a risk-taker, so my decision came as no surprise to my family and close friends. However, it was a bit of a surprise to my pulmonologist. I could tell by his voice that he was concerned, but he eventually agreed. 

Our struggles shape us 

From May until now, I have had a wonderful summer. I reconnected with old friends and family members I hadn’t seen in a while. I was able to sit in my yard with my dog, a cocktail, some great jazz, and good food on the grill. I was finally able to relax.

I also traveled a bit locally and increased my workout to help my rehabilitation. I was able to do a lot of what I love to do — and what I missed the most. I released myself from my self-imposed comfort zone. Moreover, I decided to shed my sweatpants and T-shirts for my new wardrobe.

My feelings of accomplishment didn’t just happen. Admittedly, I feared moving on. Throughout the summer, I kept my oxygen close at hand in case I needed it, and I didn’t want to go too far from my house or the hospital. At first, the fear of trying to enjoy myself and getting back to a sense of “normalcy” had paralyzed me. 

Sarcoidosis and post-traumatic stress disorder triggers tend to remind me of events and experiences that would keep me in my “safe” place, but I had to recognize them for what they are: obstacles. Being fearless is having the energy and wherewithal to continue on a path that is beneficial. It’s a daunting realization, but we have to push through; the prize is on the other side of the fight.

I give thanks every morning not only for my health, but also for wanting to be a better me than I was the day before. Last year, I would say I was at 70 percent of my old self. From last year to this year, I would say I’m at 85 percent, depending on whom you ask.

When I really think about it, I probably was at 100 percent when I was in high school. But that was more than 30 years ago, so why should I put that kind of expectation on myself? Progress requires time and commitment.

In the end, I remember where my health was last year, and I can appreciate where I am now. But the biggest payoff is looking at where I can be — and expecting to get there. As long as I continue to make progress and trust myself, I’ll be just fine. 

Feeling inspired or defeated can come from the same source: Our decisions are what define the outcome.

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