About three years ago I was living in New Hampshire and having a hell of a time getting doctors to recognize my severe, uncontrolled asthma. I’m not your average patient, but is anyone really average? My symptoms aren’t the normal ones, I’ve historically performed much better on tests than the average pulmonary patient, and I don’t complain loud enough. I have years of data and records to back things up, but how many doctors really take the time to study and comprehend all that paperwork?
The solution came from my wife, an English professor, who told me to write stuff down. The answer was quite simple because when a doctor asked, “How have you been,” I could barely remember all the details from last week, let alone how they compared to last month. It started with an excel spreadsheet where I would enter peakflow numbers. I performed three readings before and after taking rescue meds, averaged the three numbers in a series and charted the high, low and average lines. The first doctor I showed this data to laughed at me and made something up as to why the empirical data was irrelevant. There’s a long story about how I fired this doctor, but this really isn’t the time or place. The point I do want to make is every single doctor who has seen my record keeping since then has been blown away.
Today I keep a pocket-calendar/notebook where I write down all non-maintenance medications I take every day, record intentional exercise or physical activity and any events that may have contributed to an attack or flare. I have written all known medical conditions, keep an updated list of medications and physicians, and I separately track any major events and the course of action taken. This can be a large amount of information to record so I have devised a system of letter abbreviations to save space. In the case I do need more room, I just have to flip a page or two where each day has a much larger and dedicated portion of the page.
There’s an example of my notebook from last month so when I follow up with a doctor and they want to know how I’ve been, there’s something to which I can refer. The best part is I can flip to any previous month, and if I have last year’s notebook with me – that can be compared as well.
This is what got my complaints noticed. This is what gave doctors a more clear picture of just how bad I’ve been feeling. This is what finally got me treated and better. At times it feels like a job, but I wouldn’t be surprised if this act of writing saves my life some day.