Sarcoidosis Left Me Feeling Fractured, Broken, and Like a Work in Progress
Is the image of the person looking back at you in the mirror someone who’s fractured, broken, or like a work in progress? I find that to be an interesting question, particularly for my life.
I remember when I was diagnosed with sarcoidosis but didn’t have any real information about what was happening to me. The pulmonologist I was seeing at the time could only tell me that sarcoidosis had caused the skin rashes on my legs, and that it might cause a sleep disorder if it was present in my lungs.
I did a sleep study and had a bronchoscopy, and doctors determined that the sarcoid was in fact present in my lungs. At the time, I wondered if sarcoidosis had caused the nasal polyps I had removed a few months earlier.
I remember the doctor giving me some literature about NFL player Reggie White, who passed away due to complications of sleep apnea associated with cardiac and pulmonary sarcoidosis. White’s death was deeply unsettling to me, as I previously had the opportunity to meet him and his wife during a videotaping I had scheduled with them. He also was one of my favorite NFL players, having played with the Philadelphia Eagles and the Green Bay Packers.
I would say this entire experience left me somewhat fractured. There I was, diagnosed with a chronic health issue that possibly caused the passing of someone I admired, and I didn’t know how to process it. Oh crap, I thought, now what?
As the years passed, I just continued living my life. I really wasn’t paying attention to the sarcoidosis diagnosis, because as far as I could tell, I was doing just fine. Sometimes I even felt like I was doing better than most — including folks without sarcoidosis.
Even after the diagnoses, the tests, and the talk, I still didn’t know what to make of this sarcoidosis thing. It was at this time that my first pulmonologist suggested I go to the Temple Lung Center here in Philadelphia. I think that’s when it hit me, and the sarcoidosis became real for me.
As a patient at the lung center over the next decade, I did really well. I didn’t experience any flare-ups, and there was no abundance of medications; just routine walking tests and pulmonary function tests. To me, it seemed like the sarcoidosis had all but disappeared.
I remember losing my job in 2004, which inspired me to walk about 2 miles every other day. Then, in 2016, I lost my job in legal education, which frankly was one of the best things to happen to me, because it meant I would have more time for myself.
That particular career setback didn’t stop me from swimming, riding my bike on the trails near my house, and walking my doggie in the park. On the contrary, it helped me get some of my life back that I had lost in the hustle and bustle of city living. By all accounts, I was doing all right in spite of having pulmonary sarcoidosis.
Then, in 2017, sarcoidosis changed my life. My first spontaneous pneumothorax that year took a lot out of me. The experience left me feeling broken, especially after I spent two months in the hospital. Each day, the doctors would check on my progress and then tell me I still had an air leak. I started losing hope.
When I was finally released from the hospital, I joined a gym and started exercising, as I had done in pulmonary rehab. But just as I was gaining ground on getting myself back to where I had been previously, I had a second spontaneous pneumothorax.
I was released after spending a few weeks in the hospital, only to be readmitted. By that point, I felt broken. I thought, “What now?”
I was intubated and restrained, with only a dry-erase board to communicate with. I remember writing a message to the nurse asking her to thank my family for being there for me. She told me I would have the opportunity to do that myself.
Since then, I’ve only visited the hospital once, and by all accounts, it was because of a sarcoidosis flare-up.
When I look in the mirror now, I see a work in progress. Sarcoidosis has slowed me down and caused me concerns, but it hasn’t broken my spirit. I think about the times when I felt broken, and I’m thankful I am a work in progress now.
Physically, I’m not the same person I used to be, and that’s cool. I’m not broken. Mentally, I’m becoming more of the person I needed to be. I made it through 2020, my family is healthy, and I’m still here. Maybe that’s all that matters.
I no longer feel broken, just changed, and with each new day, the adventure continues.
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.
Thank you, it's always helpful to read someone else's experience with this. Even though it seems like it's different for everyone, there are common threads and it's very validating. Wishing you all the best.
Thank you Charles for sharing your story/experience living with Sarcoidosis. I was diagnosed September 2017. Fall/Winter are my broken moments of this disease. I wish it will jump out of my body, since there's no cure
Thank you Charles, at my age of 46 and 3 years since pulmonary sarcoidosis hit me like a flying saucer from outer space, I have lost my well paying corporate job but have achieved my fitness levels that defined me 30 years ago.a nd a lot of ME time, riding my antique motor bikes, walking my dog and playing tennis.
Like they say, you loose some..you win some