On measuring the wrong data for 2 years
I tracked my heartburn from January 2020 until March 2022. I stopped tracking because that’s when I found out that I never had heartburn.
But for over 2 years, I dutifully tracked my (alleged) heartburn. At this point, I was 3 years into having trouble swallowing foods and waking through the night with heartburn-like pain.
I did all the tests and saw all the specialists, but everything came back normal. My doctor said, “I know you’re uncomfortable, but there’s not much else I can do.” I coped the best way I knew how; I created an iOS shortcut that added a row to a Google spreadsheet to track the date and time of my heartburn. There were charts.
If I couldn’t fix the pain I had with swallowing food and drink then surely I could cure heartburn. I ran experiments to see if my heartburn changed. I tried:
- gluten-free
- low-acid
- no dairy
- no eggs
- no dairy and no eggs
- sleeping on 3″ wedge
- sleeping on 7″ wedge
- spending $300 on an uncomfortable heartburn pillow
- not eating 3 hours before bed
- staying upright for 3 hours after eating
- no caffeine
- every combination of heartburn medications
- nasal sprays
- muscle relaxers
- taking a shot of apple cider vinegar before bed
- acupuncture
When all my experiments failed, I asked my doctor to repeat all the tests. The last (and worst) test proved that I have achalasia, a rare swallowing disorder that impairs the esophagus’s ability to move food and liquid to the stomach. It was never heartburn.
One year ago today, I had surgery to treat achalasia. I now have an esophagus that works much better and this terribly boring data-measuring anecdote.
I was perfectly in control of all the data about my alleged heartburn, without actually being able to control it. My data collection became a strange comfort. A worry stone. Hope.
I did learn a few things on my path to diagnosis:
- Treat every appointment like it’s the first appointment.
- Bring an agenda to appointments.
- Request all medical records, keep them in a binder, and bring it to every appointment.
- Explain symptoms by how they impact your quality of life.
- And, the unfortunate truth, have health insurance, thousands of dollars, and flexible time.