Spreadsheets and sarcoidosis: Strategies to survive and thrive

Last week, I attended a friend’s fundraiser with my husband, our moms, and my sister. Throughout the evening, we talked about the latest shows we’d been watching, noting which series were absolutely must-see. My sister and I continued the conversation through the weekend, texting each other so many recommendations that we couldn’t remember them all.

“Severance.” “Paradise.” “No Good Deed,” with its sarcoidosis storyline. Every few minutes, another text, another title. Soon my sister suggested a spreadsheet to keep track.

What started as a joke (or so I thought) soon turned very real, and very exciting — exciting for us, anyway. She created a shared “Watch List,” and we honed in on the relevant details: genre, streaming service, actors, etc. We added checkboxes, drop-down menus, and an alternating color scheme (with purple, of course).

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I realize that creating spreadsheets isn’t exactly what most people would call a good time. I told my sister that as different as she and I are in nearly every way, this project was a clear sign that we’re related (though, ironically, neither of our parents are like this). Though she’s not a mental health professional, my sister offered an explanation that sounded almost as if it came straight out of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), with nods to obsessive-compulsive disorder (OCD) and attention-deficit/hyperactivity disorder (ADHD):

“Type A with OCD traits that stem from ADHD but not the impulsivity more of the ability [to] simultaneously hyper focus and multi task with an associated level of high brain function/intelligence/processing and attention to detail that is only enhanced by significantly above average memory and recall.”

I laughed. I’d always just said I was a nerd. Still, these traits have been helpful for me.

The continuing education of an inveterate organizer

About 20 years ago, I worked as a Medicaid service coordinator — basically, a case manager for people with intellectual and developmental disabilities. I had up to 30 individuals in my caseload and had to coordinate their residential, day habilitation, and clinical programs to ensure that their needs and goals were being addressed. That included monthly visits, phone calls, emails, and an abundance of documentation. Yay – spreadsheets!

These days, that meticulousness and experience have become vital to managing life with sarcoidosis.

Because it’s a multisystem disease, sarcoidosis patients usually have to see many specialists. For me, they include a cardiologist, dermatologist, neurologist, ophthalmologist, pulmonologist, and rheumatologist, with intravenous immunoglobulin (IVIG) infusions on a three-week-on/one-week-off cycle. Other health conditions I live with add an endocrinologist, gastroenterologist, and gynecologist to the mix, with physical therapy starting up again twice a week. And of course, there’s a primary physician to round it out and a psychologist to help me deal with how it affects every aspect of my life.

Clearly, that requires a lot of planning and coordination – but that’s just the medical appointments.

Every two weeks, I set up my pill organizer with 25 pills per day, distributed among four timed compartments. That requires refilling prescriptions (some through the local pharmacy, others through mail), reordering supplements and over-the-counter medications before they run out, and reaching out to providers’ offices — often more than once — for renewals, referrals, and prior authorizations (not to mention when I have medical concerns or questions).

And then, there’s … well … life.

There has to be more to life than managing sarcoidosis, but it has to be carefully woven between the needs and effects of chronic illness and disability. Over the next few months, I’ll be attending shows, sporting events, and a wedding, planning a vow renewal party, and taking a vacation. Threaded around that will be advocacy, support, and connection with my community, as well as (hopefully) the start of my next book.

Unfortunately, that “significantly above average memory and recall” has faded as brain fog often makes words and thoughts vanish into thin air. But therein lies the beauty of technology.

My emoji-filled and color-coded calendar, which shows not only scheduled events, but also tasks, holidays, awareness days, due dates, and deadlines (and the New York Yankee and New York Liberty schedules), is a lifesaver. Within each appointment, I list issues to address and questions to ask, and I schedule pop-up task reminders as needed.

I also use a notes app for random thoughts that I know I’ll forget later and life-affirming quotes that make me smile. Other apps help me save time with banking, shopping, and prescheduling social media posts. And believe it or not, spreadsheets aren’t just for fun! They’re also great for tracking medication dosages and administration times.

Though many people with sarcoidosis are unable to work, managing the disease is a full-time job in itself. We can’t quit this one, but we can embrace the tools, tricks, and technologies that make our job a little easier. And as in any good office, we can turn to our colleagues for advice, support, and help along the way. We’re in this together.

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.