After unrelenting health setbacks, frankly, I’m sick of being sick
When chronic illness makes acute illness worse, the results are exhausting
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I am sick of being sick. Tired of being tired. Sick and tired of being sick and tired.
That’s a fairly common sentiment among people living with chronic illness, since “chronic” means it never seems to go away. I’ve been living with sarcoidosis, rheumatoid arthritis, fibromyalgia, and more for nearly 20 years, so pain, fatigue, and weakness are part of my life.
But now, it’s more than that. I’ve been sick for over a month with a cough that won’t stop, head and chest congestion, and shortness of breath that’s worse than usual. When I exhale, I sound like coffee percolating, and when I laugh, I sound like the old Hanna-Barbera cartoon dog, Muttley (which only makes me laugh more, until laughing leads to a terrible coughing fit).
It started in early May, when I was in Arizona for the National Organization for Rare Disorders Living Rare Living Stronger conference. Meeting and sharing stories with other rare disease patients there nourished my soul, and a few of us talked about getting together again before I went back to New York. Sadly, I wasn’t feeling well enough to follow through with those plans.
By the time I got home, my symptoms had gotten much worse. I had to cancel all my plans for the next 10 days, including a Subway Series (Yankees vs. Mets) game, an arthritis walk, a patient advocacy speaking engagement, multiple physical therapy sessions, and my intravenous immune globulin therapy infusion. I had to get better quickly because I had a cruise coming up. So I loaded up on over-the-counter medications, Puffs Plus with Vicks, and lots of fluids, and crossed my fingers, hoping it would work.
I started to feel a little better. I still wasn’t great, but I didn’t want to disappoint my husband or the friends who were joining us on the trip. And, honestly, I wanted to go. So I packed extra meds, tissues, and face masks to match every outfit, and off I went.
I enjoyed the vacation, but spent much of it in my room. I was coughing through the night, so I didn’t sleep well, which made mornings even more difficult. I took plenty of naps, and usually had either a late start to the day or an early end to the evening (or both). Still, I’m glad I was able to go at all.
No clear answers
Once I got home, my symptoms intensified. It felt like an elephant was sitting on my chest, and the congestion and wheezing were audible in every exhale. More cancellations: a New York Liberty game, NBA Finals watch parties (Go Knicks!), another infusion (canceled, rescheduled, and canceled again), and a colonoscopy.
It had become unbearable, so I went to urgent care. They did a chest X-ray, and the results were vague and scary: “There are slightly increased lung markings in the upper lobe.”
My mind started racing. Increased markings? What does that mean? What kind of markings?
In 2015, an X-ray showing bilateral hilar adenopathy helped lead to my sarcoidosis diagnosis. In 2022, a clear X-ray led my rheumatologist to suggest that I might be in remission. Now, I had to wonder, is my pulmonary sarcoidosis progressing again?
Unfortunately, the urgent care doctor didn’t offer much of an explanation. “A lot of things could cause that,” he said. He acknowledged that I had “a lot going on,” adding bronchitis to the list without easing my fears about sarcoidosis. He ordered a short course of steroids and wished me well.
That evening, I scheduled an appointment with my pulmonologist. I was still anxious, though, so I sent him a message through the online patient portal. I asked him to look at the X-ray to see if he could ease my fears. He emphasized the “slightly” descriptor and suggested it could just be an infection. He added an antibiotic to the steroid, and we both hoped things would ease up by the time I saw him the following week.
When I saw him in person, I asked, more directly, “So it’s nothing to do with the sarcoidosis then, right?” Alas, it wasn’t that simple. “Well, you know how you said your cough lingers for weeks and weeks?” he said. “That’s because the sarcoidosis causes all the inflammation.” Fabulous.
It’s been about six weeks now, and I’m finally feeling mostly better. I still wake up in the middle of the night with coughing fits, so now I keep an inhaler by my bed. I may not like the answer, but it does help to understand why it always gets so bad and lasts so long. Now, a slightly altered version of “Casablanca’s” “As Time Goes By” is playing in my head: “You must remember this/ A cough isn’t just a cough/ A wheeze isn’t just a wheeze/ The sarcoidosis things apply/ As time goes by.”
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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