Monitoring My Chaotic Body: Life With Sarcoidosis, Heart Failure, and a Pocketful of Devices

Most people start their morning by checking the weather. I start mine by checking my oxygen saturation, blood pressure, weight, and whether my feet are trying to drown me. It’s glamorous, I know. Somewhere out there is a carefree version of me who once rolled out of bed, stretched, and started the day like a normal human. That guy is gone. That guy has been replaced by a chef with sarcoidosis, heart failure, a digital pulse oximeter, and a running commentary about the foolishness of bodily fluids.

My oximeter and I are in a committed relationship at this point. I clip that little device on my finger two or three times a day, plus every time I even think about the gym. Then there’s the blood pressure cuff — the one I used to resent but now treat with the reverence of a cranky old auntie who knows too much. Twice a day we meet, it squeezes my arm like I owe it money, and we move on. Somewhere in this circus is my scale, which has become a tattletale with no loyalty whatsoever. If it reports even a single unexpected pound, I have to assume it’s fluid playing hide-and-seek inside me instead of something fun like muscle gain or a good meal.

For years I thought I had a decent fluid detection system thanks to the veins on top of my feet, which conveniently form a little K shape when things are fine. No K means trouble. Simple, right? Well, last week I went out of town and started getting chest pains — the kind that make you pause and whisper, “Really? Today?” I waited until I got home to see my cardiologist, expecting the usual post-travel nonsense. Instead, everything looked good… except the massive water retention he could plainly see even though my K-meter lied to my face. My doctor doubled my Lasix for the week, which is basically a polite medical way of saying, “You’re going to live in the bathroom now.”

Fast-forward to this week — I’m back out of town, back on the road for work, and back to scouting for bathrooms every thirty minutes like it’s a competitive sport. Travelers search for coffee shops. I search for toilets. It’s a lifestyle. Unfortunately, now that my trusted K-shape clearly can’t be trusted, I’ve graduated to poking at my own legs to see if they dent like memory foam. If I press and leave an imprint deep enough to register as a small canyon, congratulations — I’m retaining fluid again. Nothing like adding a little DIY medical topography to your daily routine.

Of course, all of this monitoring leads up to the next big event: my stress echo in two weeks. It’s the medical version of a pop quiz — except instead of testing my ability to remember algebra, it tests whether my heart still remembers its job description. Fingers crossed, toes crossed, veins crossed — whatever works. Until then, I’ll keep watching the numbers, sipping water like it’s a suspicious beverage, limiting salt like I’m being punished for past life crimes, and visiting every bathroom between here and wherever I’m sent next.

It’s strange how normal all this has become. Once upon a time, I moved through life without thinking about oxygen levels or blood pressure readings or whether my ankles were plotting a mutiny. Now it’s all part of the rhythm. It’s not the rhythm I asked for, but it’s the one I’ve learned to cook around, live around, and grumble about with a certain charm. In a world where bodies do unpredictable things, monitoring mine is how I stay ahead of the chaos — or at least avoid surprise tidal waves hiding under my skin. And honestly, if keeping myself alive means carrying devices, pressing dents into my legs, and sprinting to bathrooms in unfamiliar cities, then fine. I’ll do it, and I’ll complain the entire time, because that is my love language.

If this sounds familiar — the monitoring, the numbers, the constant self-check — you’re not alone. Chronic illness turns you into your own full-time surveillance team, and half the job is just figuring out what your body is trying to say. So tell me: what’s your weirdest monitoring ritual? Drop a comment or subscribe for more chronic-illness-chef-life chaos. I’d love to hear your stories.