The Biggest Challenge of Sarcoidosis Is Right There in the Mirror

[Joachim]

I didn’t realize how pulmonary sarcoidosis would affect my lifestyle until about three years ago. For years, the thought of this “obstacle” didn’t affect me. But that changed on a dime in August 2017 when I had my first spontaneous pneumothorax.

I wondered how I would live my life moving forward. It’s been a big pill to swallow, and denial is something I live with. We all do!

Everyone denies those uncomfortable thoughts about our respective conditions that worry us, but sometimes we can use those same thoughts as a guide for how we should continue living our lives and moving forward.

I think most of our denial stems from four things: our physicians, our medical appointments, our test results, and the new way of life we’re supposed to adapt to. If we were to calculate the time we use for doctors’ appointments and waiting for test results, that in itself would equal an eternity. Maybe that’s the moment we subconsciously take ourselves out of the fight of living with sarcoidosis and just resolve that “it is what it is.”

Every day we wake up, sarcoidosis does, too. Who’s the better competitor?

The mirror tells the truth about your whole story!

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It seems like every day I learn something new about this condition. There’s no known cure, and it typically comes and goes like a needy friend. And like that friend, it tries to obtain all I have to offer, leaving me empty. Like that friend, I need to treat the condition, not the symptom.

One thing I’ve learned about this condition, like so many of my fellow sarcoidosis warriors, is that I never know how it will affect my lifestyle or my mental and physical progress. In the meantime, I’ll slowly watch myself being challenged by everyday activities that I normally wouldn’t have given a second thought to.

Who doesn’t like a good challenge? It makes me feel like I still have something to contribute.

Personally, over the past three years, I’ve watched myself become more of a homebody as my level of physical activity has dwindled, and I’m not pleased. The past year didn’t help matters with the pandemic lockdowns, so now it’s up to me to make the change I need to get back on track.

I’m feeling much better, thank you!

I’ll make it happen, I owe it to myself and to those who value my life.

It’s important that we at least try to do some of the things we find difficult. I know it gets frustrating most of the time living in yesterday, but we owe it to ourselves to at least try. Of course, that’s easier said than done.

I recently heard some sad news about an older couple I met in December 2019 at the lung center. The husband had a lung transplant in May of that year, and we had a brief conversation about his experience. I told him that the same day he was getting transplanted, I was being admitted to the hospital for a collapsed right lung.

He told me he previously couldn’t walk 5 feet before he had to stop to catch his breath. His wife nodded in agreement. After the transplant, he said he felt the best he had in years. He urged me to consider transplant, saying it’s a game-changer.

I’m not sure if he suffered from pulmonary sarcoidosis or some other lung disease, but looking at him at age 80, his story really hit home for me. He was back on the mend and in the gym, slowly getting back to his old self.

The news I recently heard was that his wife had passed away a few days prior. I believe she was his primary caregiver. The news left me speechless.

It’s strange how full circle some things go. In May 2019, I was being admitted for a collapsed lung the same day he was being transplanted. In June 2019, I wrote a column about the passing of a caregiver. Six months later, I met the couple, and a year later, she passed away, leaving him to get back in the game.

I’m blessed to have a support team that lives with me and understands my challenges. The one thing I told them is that I don’t want to be a burden to them. At 57, I still have a fun-filled life with daily adventures, laughs, and troublemaking, and they should, too.

I do more for myself than I ask for, and sometimes I need help. But at no times can my family, friends, or caregivers say I gave in. I have to keep moving. We all need to keep moving.

Life is not a spectator sport — it’s an adventure.

***

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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