I Am Moving Forward in Life With Sarcoidosis — And Never Quitting
A search through a sock drawer prompts memories of hardship and determination
If you don’t use it, you’ll lose it.
That’s a familiar line that most folks have heard once or twice. To be honest, I’ve heard it from my male friends more than anyone else. It seems like they had a specific meaning in mind, but as usual, it means something else to me. Trust me when I tell you that it’s hard living with sarcoidosis, but quitting because of it can make life that much harder.
The other day, I was looking for a fresh pair of socks as I was getting ready for the gym. When I opened up the drawer, the first thing I saw was a pair of hospital footies. I used to collect them after each trip to the hospital, but I thought I had given them all away.
Everyone knows that socks aren’t loyal because they disappear when you need them, so I had to search hard for a matching pair. During the search, I found another pair of hospital footies. Although they’re very comfortable, it seems like every time I wear them, I get sick.
After much searching, I finally found a matching pair of socks, so I sat down to put them on.
I started thinking about the times I was in the hospital. What I thought about most were the three hospital bands I wore while I was there. One had my name, birthdate, date of admittance, and other information. The second one had a list of medications I’m allergic to. The last one was the dreaded red band indicating that I was a “fall risk.” I never thought of myself as being a fall risk, but little did I know that having breathing issues caused by lung disorders can make you lose balance and possibly fall. This information was new territory for me.
I was determined to have that red bracelet removed.
A walk around the ward
Feeling insulted, I asked the nurses if they could take me for walks around the nurses station to get a sense of balance. They contacted the physical therapists, who assisted with my walking. It was challenging at first. I was equipped with a walker, an oxygen tank, and a pulse oximeter. Although sarcoidosis had damaged my lungs, there was no way I was going to let it stop me from trying to regain my sense of self. I realized that while the fall risk bracelet was necessary, I was determined not to let this condition make me quit on myself.
After I was discharged, I was committed to regaining a sense of normalcy in my life. I did several sessions of pulmonary rehab at the lung center where my pulmonary team is located, and also at another center in the city. I can’t say enough about how important those sessions were in keeping me moving and motivated to do better.
Believe it or not, I’m still getting used to living with sarcoidosis, but the most important lesson I’ve learned is not to give up on myself. Although my breathing is sometimes labored, I have to keep breathing. I have to keep taking deep, deliberate breaths to exercise my lungs.
I may stumble while walking, but I have to keep going to the gym and pushing myself on the treadmill and rowing machines. For me, cardio is more important than strength training. I may get tired, but I have to keep moving, because life goes on whether I’m a participant or a spectator. And I’m not a spectator or a quitter.
Staying disciplined and focused helps me to remain confident. I don’t know if I’ll get any better, but I know I can be better. Trust your body and yourself. Stand up for yourself! Remember, if you don’t stand for something, you’ll fall for anything.
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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Comments
Maeve Croly
Thanks for that Charlton, quite inspiring. I’ve had a red bracelet, but I thought it was to remind everyone that I was cortisol dependent and I thought it was a brilliant idea. Of course this was my own conclusion! Maybe I was also a fall risk. Either way it’s probably a good idea. Im all for visual symbols. I also get breathless and am now inspired to improve my cardio health. I will walk on Tuesday mornings with the pole walkers. Maeve
Ella Dunn
Good morning. I was diagnosed 2 years ago with sarcoidosis of the skin. The lumps went away by themselves and have not returned. Long story short, in February I got COVID for the first time. I felt it was like a mild form of bronchitis that I would get on a yearly basis. The second time I was diagnosed with COVID was in August of this year. It brought me to my bed for 3 days. I, then got bronchitis (still had the the cough from COVID) and I am still coughing..some days worse than others. I was seen in the clinic that I work in (nurse) and a chest xray was done. The doctor came in and asked me if I had sarcoid. I told her when I was diagnosed. She said that she seen areas in the hilar region of both lungs. So.....here we go. I have a CT scan scheduled for 10/30 and can't get in to see my pulmonary doctor til the end of December....