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Weathering the storm: A bad day is made worse with sarcoidosis


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banner image for "Float Like a Buttahfly," a column by Kerry Wong, depicting a butterfly winding through the sky

Have you ever had one of those days?

You know, the kind where nothing seems to go right, where a dozen things have gone wrong before you’ve even left the house?

OK, technically, I did leave my apartment, and came back, and left again, and came back again. And that was only part of the problem.

It was my weekly infusion day, and I was heading to the hospital. As I got into my car and pulled the door shut, I heard a crunch as it bounced back out. I initially thought it was my Auto Cane, an assistive device that offers support and leverage as I get in and out of the car. I’ve absent-mindedly closed the door on it more times than I’d care to admit (thanks, brain fog!), but this didn’t quite sound the same.

As I pushed the door open, I looked down and saw my phone. In a level of physical coordination that I never could’ve achieved if I tried, my phone had apparently fallen out of my pocket at the exact moment that the door was closing. Crunch!

A close-up photo of a cracked cellphone in a purple case lying on a wooden table. The screen is completely black.

Kerry’s cellphone after being crunched in her car door. (Photo by Kerry Wong)

I rushed back upstairs, breathless and sweating, hoping I had an old phone I could reactivate. I found one, but it wouldn’t connect right away. I used my husband’s phone to let the infusion center know I’d be late while I kept trying to activate the old phone. I couldn’t wait long, though; my intravenous immunoglobulin (IVIG) treatment takes about eight hours, and I didn’t want to keep the nurses there too late.

I left again, hoping I’d remember how to get to the hospital without GPS to guide me. I hadn’t gotten far when I hit the first roadblock: It was raining so hard that the street was flooded. I turned to go another way, and soon enough reached another road closure. Within seconds, two firetrucks passed, heading toward other flooded roads and downed trees. I took that as a sign to go back home.

Without a phone, I had to find another way to let them know I wasn’t going to make it in for my infusion. I couldn’t reschedule for another day because I have other medical appointments nearly every day, so I just had to miss my sarcoidosis treatment. Again.

Life is more complicated with chronic illness

It feels like that’s been happening a lot lately. Not the “crunching-my-phone-in-the-door-then-getting-sidelined-in-a-storm” part, but I’ve been missing my treatments far more often than I’d like.

I’ve had to forego my infusion three of the past six weeks, either because I wasn’t well enough to get there or because the weather kept me from it. Not too long ago, I had to miss it for a few weeks around my hip replacement surgery. Before that, I had to skip it after I broke my foot, then when I was exposed to COVID-19, and again when I tested positive.

Without getting IVIG weekly as ordered, I’m not getting the full benefit of the medication. That’s probably why I’ve had so much more pain and fatigue lately, and why my physical therapy seems to have gotten harder. This kind of thing can easily spiral into a self-perpetuating cycle, where a missed treatment leads to feeling worse, which leads to missing more treatments, and so on.

I’ve often told my husband that I miss being low-maintenance. Before I was sick, I could decide that I wanted to do something and just do it. I could jump in the car (or better yet, go for a walk!) and meet a friend for coffee. I could go to the movies, or a Yankees game, or bowling on a moment’s notice.

Now, I have to think about the physical exertion, the weather, the accessibility, which medications I’ll have to take in advance, what assistive devices I’ll have to bring with me, how much I’ll have to rest and what I’ll have to miss to prepare for the activity, and how much I’ll suffer afterward.

It’s the same when it comes to something as simple as the rain. A storm can be anything from a minor inconvenience to a dangerous situation for anyone, but there are extra considerations for people with chronic illnesses like sarcoidosis.

We may not have a hand free to hold an umbrella because we’re using a mobility aid. Our scooters are not designed to operate through heavy rain or floods. Inflammatory arthritis pain often increases with weather changes. And when a storm prevents us from getting our necessary medical treatments, it can have severe consequences.

Photo shows a people walking through a flooded street in Venice, Italy. At center, a man is carrying a folded mobility scooter in the air.

Kerry’s husband, Michael, tries to keep her scooter dry during a flood in Venice, Italy, in 2018. (Photo by Kerry Wong)

Still, I tend to look for every cloud’s silver lining — in this case, literally.

“So never mind the darkness, we still can find a way/ ‘Cause nothin’ lasts forever, even cold [September] rain.” — Guns N’ Roses, “November Rain”

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.

The post Weathering the storm: A bad day is made worse with sarcoidosis appeared first on Sarcoidosis News.

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