I’m Looking Forward to a New Season While Living with Sarcoidosis

‘Tis the season to be … well, actually, ’tis my season to be jolly.

I love the fall! This time of year reminds me of the new year, except that it’s in the middle of the year. The weather starts to cool down, the kids are back in school, and there’s a sense of life getting back to the way it used to be — before everyone needed that “summer break.”

I can pick up where I left off on some unfinished projects. I’m looking forward to continuing with my online courses in naturopathy, nutrition, and herbal medicine. I can work out like I want to without the kids and parents monopolizing the gym space. I can slow down to appreciate getting my life back on track. I even shaved my beard to symbolize “new beginnings.” But then the razor slipped, so I was committed to a “fresh look” for the season — that’s going to take some getting used to!

Small milestones, huge gains

This time last year, I was leaving the hospital after my previous spontaneous pneumothorax. My emotions were all over the place. I didn’t know whether I should take the time to relax and enjoy my favorite season, or try to jump back into the hustle-and-bustle life to which I had become accustomed. I was on edge because I didn’t know what pulmonary sarcoidosis had in store for me during my recuperation. I decided that I would take my time rehabilitating my body, but little did I know that my mind would need time to heal, too.

Once I became settled at home — for good, I prayed — after so many hospital stays, I started twice-weekly in-home sessions with a physical therapist. When I first met him, he gave me a list of exercises explaining that they would help to strengthen my body, particularly my legs, core, and arms. He also mentioned that for each day that a person spends in bed without moving, they lose about one week of physical function. That fact stunned me, as I recalled how weak my body had become after several weeks in the hospital. I decided then that I was going to keep myself moving because I didn’t want to become a burden on my family. I was determined not to quit on myself.

The physical therapist told me that I would be doing these exercises for a long time after we’d finished our sessions. He was right; I’m still doing them one year later. The difference is that now I’m more rejuvenated and notice the improvements after each gym session. My doctors have observed my progress, too.

Do the research, then celebrate

I was listening to my local news last week while playing golf on my tablet and heard a story about a local surgeon helping people with lung diseases. I glanced at the television screen and recognized my surgeon, who was being featured on the newscast. The story was about bronchial valve placement to ease breathing distress in those with progressive lung diseases.

I became overwhelmed with emotion because two years ago — almost to the day — I was a research patient of this surgeon for the same procedure following my first spontaneous pneumothorax. I couldn’t wait to share this story with my family and close friends. At that time, my pulmonologist had suggested that I consider the procedure as an option. I’m glad that I did, and he is too.

A new season of change

It’s been 25 months since I first received two bronchial valves and 18 months since I had my third. Life is good. These past two years have shaped my life in many ways. I won’t allow myself to go back to my previous hectic lifestyle. Every day is a new adventure, and maybe certain things happen to us so that we can better appreciate the road we’re traveling.

The way I look at it, sarcoidosis is like a testimonial. The testimony is in how you face the problem and decide how to deal with it. How you want to live is up to you — let everyone know that you’re doing just that: living. I remind myself that it takes a special kind of person to be able to handle this condition. I’m truly grateful that I have the strength, the courage, the pulmonologist, and the surgeon on my side to help me to experience many more adventures.

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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.