There’s No Safety in Numbers When You Live With Sarcoidosis

Charlton Harris avatar

by Charlton Harris |

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Many folks with chronic health issues have difficulty focusing on too much at any given time. I have repeatedly tried to overcome this habit.

Each day, I’m faced with the reality that my life is different and I have to move on, but it’s easier said than done. Moving forward with a sense of purpose needs to be my decision, and I need to make it count.

Safety in numbers

As of this writing, it has been 1,154 days since my first spontaneous pneumothorax and 880 days since my second. After my first incident with my left lung, I spent 53 days in the hospital. During that time, I worried about everything! I hadn’t worked in over a year, and when this happened, my world all but collapsed — much like my lung.

Subsequently, I had to use most of my retirement savings to keep from losing my house, and dealt with various other issues we encounter as adults. During that time, I told myself I was going to start doing more of the things I love to do, such as cooking.

I had put cooking on the back burner to concentrate on getting back to where I was physically before the incident. Everything was going well. I participated in pulmonary rehab and joined a gym when the program ended. I was well on my way to recovery, though the mental scars still invaded my thinking.

The second spontaneous pneumothorax occurred when I least expected it, 228 days after my release from the hospital. This time, it was in my right lung. I was hospitalized for 27 days and released a few days before Father’s Day.

Five days later, and two days before my birthday, I was readmitted for crepitus. I spent about seven days in the hospital. The numbers don’t lie, especially when you remember them during certain seasons. 

Why am I putting myself through this mental manipulation? I realize I can change the narrative of this story.

Changing the game

I am not benefiting from constantly thinking about the times I was down and out. But by grace, I’m still standing, alive, and causing havoc among my family and friends.

I came across an interesting article this week that made a lot of sense. The author, Don Johnson, explains how to “get unstuck and reclaim your mojo.”

I realized I was keeping myself stuck by reminding myself of how many times I’ve been hospitalized and how much time I’ve spent recuperating. I was unconsciously reminding myself where I’ve been, and not realizing how far I’ve come.

Life brings many ups and downs. We can appreciate both and we can live with both, but there has to be a happy medium that allows us to keep going. I know where I’ve been and how far I’ve come with this illness. Now, I want to focus on how much further I can go. I have no tears for sarcoidosis.


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.


John Robinson avatar

John Robinson

This makes me realise how lucky I am to live in the UK where we have the wonderful NHS to look after us. In my opinion its creation is probably the greatest thing this country has ever done.
As a long time sarc sufferer I know how difficult things can be. Nobody choses to be unwell, illness is not a consumer item. People with long term conditions should not have to worry about paying for their treatment as well as worrying about their health.

Debra P. avatar

Debra P.

I think you are right, Charlton; a happy medium allows us to keep going. Having Sarcoidosis is teaching me to look at the glass half full. Every day I wake up to accomplish anything is success! I have slowly gotten to the point where I count "daily successes". So if I did one more thing than I did yesterday or two days ago or even more than what I did a month ago I feel good about it. I can be down and feel crummy every day but feeling good and doing things doesn't necessarily happen every day. You have to work at feeling good. But every day that I am able to do things is a great day. I also try to draw from my days as an athlete. I have always said that what I learned on the track field can be used off the track. I am putting some of that belief into play now. My old track coach continues pushing me, even from beyond the grave. He was a tough old coach and I'm in my fifties now, so darn him.


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