Looking to the future after another fall and fracture

Oops, I did it again/ I fell on the floor/ I’m in so much pain/ (Oh baby, baby)/ Now my arm’s in a cast/ Let’s hope it’s the la-a-a-ast/ I’m not that confident (sigh). 

Kerry is always coordinated, even with her cast. (Courtesy of Kerry Wong)

That’s how that Britney Spears song’s been playing in my head for the past few months.

Yep, I fell again back in September. I’m not even sure how it happened this time. It wasn’t syncope, and I wasn’t descending steps without a handrail. I didn’t feel dizzy or slip on a wet surface (just a few of the ways I’ve fallen recently). My husband said it looked like I tripped, but there was nothing in the way, so apparently I’m just that uncoordinated (but always color-coordinated).

This time, I fell forward, and I went down hard. My hands extended out to break my fall, but instead, the fall broke me. Well, it broke my radial bone, anyway — right at the wrist. After a decade on steroids, my bones are pretty fragile, so these falls are likely to cause more fractures.

With my hand in a cast for a month and then in a brace for another, I haven’t been able to type (or do much else). Now that I can finally write again, it feels like the year is almost over, and I’ve missed so much. Still, it’s been a momentous year for me, both personally and professionally. And with a milestone birthday (50!) in a few weeks to cap it off, I’m feeling particularly reflective.

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Looking back

I’ve always wanted to write a book. In adolescence, I started with poetry. In grad school, I wrote short stories and hoped to become a novelist. In my 30s, I shifted to nonfiction, sharing my life experience in a personal blog. Turning that into a self-help book became my new dream.

As fatigue, pain, and other disabling symptoms of sarcoidosis took hold of my life, it felt like that dream had fallen out of reach. I sometimes struggle just to write a column here twice a month, so I could never write a whole book on my own. When it dawned on me that it didn’t have to be on my own, everything seemed to align into place. The more patient perspectives I could bring together, the more people it could help. With that in mind, I adapted the dream to my reality, leading me to publish “Kaleidoscope: Rare Disease Stories” on Rare Disease Day on Feb. 29.

Another career highlight for me also centers on elevating patient voices. Bionews (the parent company of Sarcoidosis News) invited me to be a member of its new Patient Advisory Board. By seeking our diverse patient perspectives, the team can ensure that from concept to execution, everything they (we) do is aligned with the “genuine needs and aspirations of the rare disease community.” Taking on this role is both an honor and a great responsibility.

On the personal side, my greatest delights this year have come with my husband’s retirement. We’ve been taking full advantage of his free time, traveling and attending more concerts, shows, and sporting events than ever. I feel like a giddy schoolgirl with a crush, and I can’t contain my smile — even if we’re just sitting at home watching television (and quite often, that’s all my body allows me to do).

With the joy of that retirement, though, comes both emotional and practical distress. While I am over-the-moon happy for him, his levity underscores the contrast from when I had to stop working due to disability. I also temporarily lost my health insurance, as administrative delays interrupted the transition from his employer-based coverage to Medicare. As a result, I had to miss some of my treatments while waiting for it to become official.

Another painfully obvious low was falling (again and again) and breaking my wrist. Aside from the pain, there’s the frustration of all the things I couldn’t do with only one hand. When my doctor said I shouldn’t drive, my husband simply said, “It’s a good thing I’ve got time to be your chauffeur!” While I’m grateful for his support, it still left me feeling like even more of a burden than I usually do.

Looking forward

In 2025, I feel like I’m stepping into the future, into a new life.

I’m gathering ideas for the next book in my “Kaleidoscope” series, which will focus on invisible illnesses. My husband and I are hoping to move in the next year or two, so I’ve identified sarcoidosis clinics to continue my care wherever we end up. We’ve ordered accessible season tickets for the upcoming WNBA and MLB seasons, talked about other road trips and vacations, and are planning to renew our vows for our 25th wedding anniversary.

When I think about this new life, a song by Timbuk 3 comes to mind: “The Future’s So Bright, I Gotta Wear Shades.”

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.