I had a dripping faucet in my home that was repaired recently. This annoyance somehow made me think about sarcoidosis and how it is much like a dripping faucet, except for one annoying fact that sarcoidosis cannot be repaired. Strangely comical how a dripping faucet has become an analogy for sarcoidosis for me.
As the faucet dripped for days, I began to reflect on the process of this disease. The road to diagnosis took years for me, followed by the constant barrage of expanding diagnosis, specialists, treatments, and failures and short-lived successes with medical treatments.
As a retired nurse with a focus on cardiovascular disease, I was used to successful treatments, surgeries, medicines, and physicians engaged in finding cures. I cannot even begin to describe what a shock it was to me when I found out I had sarcoidosis and had to leave my career and apply for disability. “This was not supposed to happen to me”, is the phrase so many of us repeat over and over.
It took a lot of effort, a loving partner, and a lot of tears and years to finally accept how sarcoidosis has impacted my life and learn to live with this new “normal”. Resources that have helped me cope includes my daily practice of gratitude, mindfulness/ meditation, nature, pets, a healthy, nutritious diet, and educating myself on sarcoidosis (many of these resources can be found on the FSR website).
As a mindfulness and meditation instructor I cannot emphasize the importance of stress management, as stress itself is pro-inflammatory and wreaks havoc on our bodies and minds. Mind-body connection is a powerful tool for all of us who have sarcoidosis, but often ignored by most, including the medical profession.
I encourage everyone to take the time to work on this connection and find your balance between medical treatment and your self-care techniques. Do whatever it takes such as walking in nature, listening to music, cooking, knitting, yoga; anything that helps you calm the mind and find balance.
Stop the dripping faucet, one drop at a time!
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About the Author:
Susan D’Agostino is a certified mindfulness meditation instructor through the McLean Meditation Institute. Susan is a sarcoidosis warrior and has had a life-long interest in the mind-body connection, specifically as to how the mind affects the body in prevention of disease and in its recovery from illness. She is a retired registered nurse, and has worked in the health care setting in various roles for over 40 years. Susan utilizes meditation and mindfulness practices in her own daily life. As your meditation and mindfulness coach, she will teach you techniques that will help you in your personal journey to health. Susan joined FSR as a Patient Advocate in 2020, and a Patient Navigator in 2021. In 2021, she hosted the FSR Virtual Wellness Mindfulness and Meditation Series. You can view the entire series in our video library.