Dare to Be Your Best While Living With Sarcoidosis

I am so tired of the overly used phrases “the new normal” and “we’re all in this together.“ No! These are not the truths we live with.

Only other folks in the sarcoidosis community dealing with this inconvenience can attest that “we” are all in this together! Nothing stops for us, and there’s no pause button, so we are in this collectively. Interestingly enough, the majority of folks don’t believe in protecting themselves from others, and vise versa.

Last week, I decided to step out of my comfort zone and resume my life — maybe not as I had known it, but I had to resume living. I have always pushed the envelope and taken chances, so I decided to do just that. At first, I was apprehensive, but then I thought, “What the [expletive]? Go for it!” So, I did. 

Ever since I suffered multiple spontaneous pneumothoraces, I’ve become a little gun-shy. While recuperating in the hospital, I made several bucket lists. They weren’t lists of things I wanted to do before my time was up — they were more like lists of things I could do that would be fun. 

A small sense of normalcy

My wife alerted me that she believed our gym had reopened, mainly because she saw a monthly deduction from her account. She was right, and I couldn’t have been happier. A self-proclaimed handicapped gym rat, I couldn’t wait to get back to working out.

The next day I was there, walking on the treadmill, oxygen in tow. During my hospitalization and pulmonary rehab, the most important thing the therapists told me was to keep moving. Over these three years, I’ve learned that sarcoidosis doesn’t like a body in motion. 

After my first day back, I felt great! I immediately thought I could pick up my exercise routine from months ago, but I quickly realized that wasn’t the case. As one of my therapists reminded me, “Slow and steady wins the race; fast and furious, on your face.” So, slow and steady it was.

When I returned home, I showered and decided to keep the momentum going. It was time to move my self-induced fear from the front burner to the back burner. Time to reintroduce my old self back into my life.

Time to have some fun again

The next day I was back at it. I usually like to go to the gym early, between 9 and 10 a.m. That was my routine before the world turned upside down. When I was hospitalized in the lung center, they woke us up every morning around 5:30, and we had to be sitting up in a reclining chair before 6 a.m. One of the nurses explained that they like to get patients sitting up early so no fluids settle in the lungs. I used to call it “waking up the lungs.”

I continued with my routine. I hit the gym, came home, showered, and changed my clothes. Then, I had this crazy idea to go to the bank and get a safe deposit box for my personal items that are currently hidden throughout my house.

I made it to the bank and was able to get a box. While there, I asked the representative if I could apply for a credit card, too. She told me I could, and if I was approved I would get the card on the spot. We did the application. During the process, she mentioned I could also apply for a line of credit. She said if I applied for the line, too, they would only pull my credit report once.

Once she finished the applications, she left her office to get the keys for my box. When she returned, she looked at her computer screen and said, “Hmm, looks like you got approved for both. Nice!”

I was surprised. I walked into the bank for one thing and left feeling more confident than I had in a few years.

Good or bad, every day we have to take chances. It’s time to do something with the promises we made to ourselves. I promised myself I would do something with my photography, and now I have the resources to start. I promised myself I would start a small cooking business, and now I have the resources to start.

Moving forward requires you to make the effort. The most important effort you must make is thinking and believing you can move forward. Now, move forward!

(Photo by Charlton Harris)

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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, and are intended to spark discussion about issues pertaining to sarcoidosis.