Trial and error

Things I’ve learned in the first three weeks of 2021:

Sugar = pain. I love sweets, but my body doesn’t like sugar and it’s no longer shy about letting me know. Like, it’s really not holding back any opinions. I tried having dairy-free ice cream bars for dessert after dinner and it threw my joints back into the red/swollen/achy mess they were in last fall. Same thing with Splenda in my tea. And forget about me sneaking a bite of leftover Christmas candy. That dog don’t hunt. So… Fruit is now my sweet of choice. It’s a slow shift but it’s a good one. I’ve started making dried green apples in my air fryer and those are my new favorite I-have-to-have-a-sweet snack.

Exercise = good. Weeks in which I’ve been able to either take a short walk or ride my stationary bike are better weeks. I sleep better, move better, and think (a little) more clearly. So I aim for at least 30 minutes of activity 6 days a week.

For the first few days, just sitting on the bike for five or ten minutes, keeping the resistance level on the lowest setting, and going s-l-o-w was enough. I didn’t know if the pressure on my feet/ankles/knees or lower back would trigger another flare or make me stronger. The pain wasn’t too bad, so I just kept trying a little more every day. In time, it’s gotten easier. Or maybe I’ve gotten stronger? Either way, exercise helps.

At my last appointment, I asked the Rdoc about returning to the gym and taking water aerobics – he said group classes are not a great idea since C19 numbers are so high, but swimming or water walking solo would be ok. So maybe I’ll give that a go next.

Rashes = odd. After a month or so of methotrexate, my hands and arms sprouted a tiny flock of itchy, red bumps. So that’s weird. Remind me to show my doc at the next visit.

Brain = jello. I’ve never been a rocket scientist, but I’m not usually this hard pressed to find words, finish tasks, or remember why I walked into a room. Maybe it’s age. Maybe it’s the methotrexate/prednisone combo. But it’s annoying and it makes doing both my paid-job and my mom/wife-jobs a little harder to do in a reasonable amount of time. My mind wanders like Frodo through the forest. Only he has a mission, and I don’t remember what I’m doing there. But I keep trying. Making myself lists. Saying things out loud… What was I writing about again?

Round one = done. For as long as we’ve talked about the availability of a covid vaccine, I’ve thought I would be one of the last to get it. Until December, I considered myself very low risk, so why would I take the shot before someone else?

Then my Rdoc and my GP informed me otherwise, and put me on their lists. I signed up on the county lists, thinking there’d be no way I would get the shot before the spring. But after three weeks of waiting – I got notification that I had an appointment.

So I did what any reasonable person would do: I cried and confessed my guilty feelings to my husband. I’m not proud. That’s what I did. He listened. He’s good that way. And in spite of my silly pride and fear of the vaccine triggering a flare (or worse), I got the shot.

I’m fine. It’s all fine. Really. Sjogrens and Lupus – or shlupus, as we call it here – aren’t new diseases. People with shlupus live full lives and chase their dreams and work and do all the things and they have for years. It might take me a minute to figure out what this looks like for me, but I’m doing it, and with God’s grace and a little trial and error, I’ll get there.

Published by Kell McKinney

I write middle grade and picture book stories. Member of SCBWI. Former marketing manager for a company people love to hate.

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