Tracking, Charting, and Planning Your Chronic Illness
Why should you maintain a daily journal to track your chronic illness journey with COPD, heart failure, and diabetes?
There are a good number of reasons why you should document your own journey, what you will learn as you progress, and what the outcome could be. Be your own advocate and watch your knowledge increase.
It is my job
When I first got sick, I assumed that tracking my progress, or lack of it, was the job of the doctors and nurses. I thought someone else would do it ... someone, more qualified than me. However, as it turned out, nobody did it.
As I was shuffled between 3 major hospitals and multiples of doctors and appointments, documents were always missing. If the doctor doesn’t have the information, I have come to this visit for no real reason.
Doctors constantly asked when, where, and why I had this and that test. Or when did I last see this or that doctor? If I didn’t keep track, who would? That is when I knew that if my chronic illness was going to be managed, I was the only person qualified for the job.
I started journaling
I started journaling in 2016, right after I became ill. The best minds from 3 major medical centers, could not get a handle on what was going on with me. There were a great many doctors and a great number of tests, but still, there were no answers.
There seemed to be no reason for this "event." So, it was concluded that the cause must have been a COPD exacerbation even though there was no sign of infection anywhere in my body.
However, when I had a second sudden cardiac arrest 6 months later, everyone paid attention. Each event involved intubation, each time and spending months in ICU.
Documenting their visits
At the time, I knew very little to nothing about having a chronic illness. I had no idea what was happening to me and the changes that were to come.
The doctors were very limited in what they knew and often had nothing to report, so I started documenting their visits. I learned that if you get a good nurse or Personal Support Worker (PSW), the ones that read your charts, they are happy to tell you as much as you want to know.
As the information increased, and the tests piled up, I began to get organized. I started breaking my journal down by months, then weeks, and finally days. I believed that each day was a gift and as such, it seemed right that each day deserved its own mention in my journal.
Advocating for myself
During doctor’s appointments, I realized the importance of advocating for myself. Doctor's encouraged the part I played in helping them understand what was happening to me. Showing them the evidence that would help them understand how to help me made visits more productive.
My doctor became more interested in my journey. He gave me pointers on what triggers could make my symptoms better or worse. I was encouraged to track the information in my journal.
Now is a great time to get the books and pencils out and to start your own health tracker journal.
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Editor’s Note: We are extremely saddened to say that on January 7th, 2024, Barbara Moore passed away. Barbara’s advocacy efforts and writing continue to reach many. She will be deeply missed.
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