It’s hard to know where to start. I’d planned to write an update about yesterday’s visit with the cardiologist, but what’s freshest in my mind is today’s incident. It’s the closest I’ve been to calling 911 in awhile.

Not feeling well since Monday, I’ve been trying to listen to my body and take it easy. I had Evan hang the clean clothes I’d put on the hanger while sitting on his bed. Lunch was a quick smoothie. And since friends were stopping by, I decided to handle the few remaining dishes in the sink.

Suddenly I felt lightheaded and had a stabbing pain in my chest. It’s not the first time this has happened in the last couple of weeks. I retreated to the AC in our office and sat on the desk chair. After a few minutes of resting, I was still in severe pain and decided to take my blood pressure (BP) and an EKG (via my Apple watch).

The doorbell rang as I stood up to get the equipment. My friends quickly realized the situation and gasped when they saw the numbers. My heart rate was in the 170s and my BP was really high too. After calls and texts from all our phones to Todd’s, a nurse called me back. “He’s in a case, but I saw you called several times,” she said. I don’t know how to say this any other way. “Yeah, uh, something’s happened and I need to know if I should call 911.”

I am aware that normal people would not do this. For Todd and me, triage at home is always preferable to the hospital. Post-traumatic stress from medical trauma is real, and we’re both affected by it. He has been with me and witnessed the agony I’ve endured while trying to explain my complicated body. We only go to the emergency room if it’s a last resort.

Looking over the EKG, Todd gave me the game plan. Medication. Rest. Watch. Wait. In the meantime, I decided it was time to fill Ella in about what’s happening with my heart. It’s important she’s prepared in case of emergency.

“I have something called cardiomyopathy,” I said. “As you might guess, ‘cardio’ means ‘heart’. ‘Myopathy’ means ‘weak’. So basically my heart doesn’t pump blood as strong as it should,” I tried to explain calmly. “I now have a wonderful and permanent cardiologist. He’s very smart and has ordered tests to determine the exact reason. Once he knows for sure, then he will prescribe medicines that will help me. In the meantime, I need to be careful.”

Without any history of diabetes or smoking and given my age, it’s gotta be genetic. My mom carries two genes and my dad carries a third. Add in my type of muscular dystrophy, and there’s the fourth reason.

Discovered when Ella was a baby, doctors assumed it was from the pregnancy. But when they tried to treat it with medication, I had life-threatening acute allergic angioedema. That earned me almost a week in the hospital. Over time, it improved to the point of “low normal,” so I was cleared to get pregnant with Evan.

However the latest tests show my heart is deteriorating. A cardiac MRI has been ordered which will be followed by another type of scan. Both will show in detail the patterns of my heart muscle defect. Since I’m allergic to the typical treatment, the cardiologist will need time to come up with another game plan.

I never realized how strong the desire to protect my kids would be. I certainly never envisioned having to make a list of conditions to relate to a 911 operator. Sometimes I feel I’m the thing my kids need protection from. Just this week they’ve heard “no” to play dates, sleepovers, swimming and fort-building. It’s not because I don’t want to, but because I simply can’t. Any plans are subject to whims of an unpredictable body.