It's been six years since I learned I have a chronic lung condition. When I was first diagnosed, I didn't know what to expect, but the things I read online scared me. Mostly, the take-away was that this disease would shave years, if not decades, from my life. I decided to stop doing Google searches.
Instead of fretting about what may come, I focused on what I could do each day. I started walking on a treadmill. My docs and I experimented with different types of meds to control the fibrotic growth in my lungs. I have a circle of family and friends who pray for me regularly. I wake each morning and tell myself, "NSIP isn't going to kill me today."
My journey has produced a few things that surprised me:
- MYTH: When people see me with Herkimer, my portable oxygen concentrator, they assume I was, or am, a smoker.
- TRUTH: I've never smoked. I was a vocal major in college. It's death to a singing voice. My doctor doesn't know what caused my NSIP, but smoking wasn't a factor. However, when I walk past a group of teenagers who are smoking away, I have been known to slow down a little to let them get a good look at Herkimer, and hear his rhythmic click-and-whoosh. Then I say, "Just keep puffing, kids." and let them draw their own conclusions.
- MYTH: Nothing in my environment needs to change to accommodate my condition.
- TRUTH: Carpets, even tight, flat weaves, are evil. When I'm pushing Herkimer in his rolling cart, I really appreciate hard surface floors. During our 2014 home remodel, our contractor went the extra mile and made sure all the transitions from one room to the next had no raised thresholds. I bless the man's name every day.
- MYTH: I can still do the things I love.
- TRUTH: Sometimes. For a couple of years, my cough was so persistent, I couldn't sing. When I opened my mouth, I had no idea what would come out. Matching pitch was a crap shoot. Now, things seem to have settled enough for my voice to come back...somewhat. It'll never be what it once was, but I can sing well enough to "make a joyful noise!" Sadly, I still can't ballroom dance with my husband.
- MYTH: My lung condition is chronic and degenerative. Like Beethoven's deafness, I will be "never better, always worse."
- TRUTH: Boy, I hope that's a myth. I have to believe it is. I've seen dips of decline and surges of improvement in my lung function over the past six years. Even my most recent tests at Mayo Clinic bear out this clinical self-evaluation: I am better than I was, say, at the beginning of 2014. While I still need Herkimer to walk a mile or two on the treadmill, I can now move around my home with the stately grace of a three-toed sloth without him! I can even do simple tasks like cooking or laundry while maintaining good O2 sats. That may not sound like much to you, but believe me, I'm tickled to pieces!
And today is a good day.
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"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." ~ Matthew 6:34
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