I have been an avid user of notebooks to keep my asthma notes in. This has included a range of journal-type entities, from how was I feeling, to medication side effects, to visit notes. I found this to be necessary after I spent two years with a specialist getting nowhere with my asthma control and being especially naive.
Tracking my asthma over time
I have been keeping an asthma journal for about 12 years. At first, they were a hodgepodge of notes, fears, and questions. After a time I tried to organize them. They turned out to be a hot mess. At least I had arrows and handwritten notation with page numbers on where to find corresponding information. I have since edited this system, but I really wish I had begun with some form of overall methodology that could keep my notes organized.
Recently, I had to reference one of my original volumes in my series of asthma notebooks. I was on the hunt for a particular medication regimen that I was on during a specific time period.
As I took a deeper dive into my notes. What I found were the follow-up appointment notes showing some changes in asthma control but no definitive answer on what was my medication at a particular point in time. Ugh, I had wished that I had tracked this from the beginning in a better format for comparison than journal-style notes.
What is the best notekeeping system?
This sent me out on a quest for what could be the right system adjustments for recording medication and visit notes. While many of us have health system portals and apps these days, I have found that mine do not have nearly enough detail in them to be generally helpful. There is a medication section, but it lists current medications in chronological order.
I wish that I had access to my clinical notes. They are seldom included in my portal which means that I generally have to request them to cross-reference with my notes. Did you know there is a movement called Open Notes? Open Notes is a movement that supports and studies open and transparent communication by sharing notes between patients and their care teams.1
Setting up asthma tracking charts
I have since decided that I need to take the first couple of pages of my notebooks and set up some asthma tracking charts. I am going to do a medication calendar type chart, perhaps with the date on one axis and then the medication along the other axis. I was also thinking I could draft up some tables and try and track the information as well. The challenge is that I need to be able to track multiple medications plus multiple dates. Are there any statisticians out there that have any advice?
I have previously used a timeline fashion with a table of contents in my notebook. However, my initial experiment had me reference between multiple pages. I am also thinking about moving to almost a reference card section, where perhaps I could just update the one area. I have to admit that these old school solutions are the ones that seem the best.
What system or chart do you use for tracking your asthma? Have you moved from a hard copy paper and pen system over to a digital system? I would love to learn more about what other solutions you are using.
Do you get muscle cramps caused by your asthma medicine?