by Donna Gregory Burch
Posted 10/20/17

One of the best tidbits of advice my mom gave me in my 20s was to always request and save copies of my medical records. I was healthy at the time, so I had no real understanding of why medical records were important, but her advice has since served me well as I navigate the barrage of bills, lab reports, insurance statements, appointment reminder cards, and other paperwork that comes with chronic Illness.

I now have a three-part system for keeping my medical life organized: a binder for medical records; a file folder for time-sensitive items like medical bills, insurance providers’ explanations of benefits, and referrals; and digital files for medical data that periodically needs to be updated.

My Medical Binder

I started this one about 10 years ago when routine blood work results and other miscellaneous health documents began to accumulate. Stashing them in a three-ring binder was an easy way to store them.

Later, when I began to experience symptoms of Lyme and fibromyalgia, my binder became instrumental in keeping everything organized as I went from doctor to doctor, trying to figure out what was wrong with me. At every appointment, I requested medical records – both doctors’ notes and any lab reports – to create a paper trail for myself and future medical providers. I’m glad I did this, because many of these early visits were one-time interactions; the doctors couldn’t help me, so I never returned for follow-up visits. Had I not been diligent about requesting my records, there would have been a sizable hole in my medical history.

Today, my three-ring binder has been upgraded to include four sections:

  1. General health. This is where I keep records from my routine blood work, mammograms, well-woman visits, eye exams, etc.
  2. Lyme/fibromyalgia treatment. Here, I include visit notes and laboratory results.
  3. Medical marijuana. This is where information related to my medical marijuana license and the local dispensary lives.
  4. Health insurance coverage.

The Lyme section has been particularly useful in making vital treatment decisions. Just one example: Looking at my lab reports and doctors’ symptom trackers recently helped me choose to end long-term antibiotic therapy. Having that black-and-white data in front of me made the treatment decision so much easier, because I could really quantify the effectiveness of the antibiotics—or in this case, the lack thereof.

In the back of my binder, I have several plastic baseball-card dividers where I store the business cards of my various doctors, both past and present. Sure, a Google search is a much quicker way to pull up a phone number when I need it, but these cards prove handy when I need to revisit a previous doctor.

For instance, I’ve kept the cards for a podiatrist who treated me for plantar fasciitis a couple of years ago. If I ever have another foot-related problem, I can refer to his card in the binder and quickly make an appointment instead of trying to pull his name from my foggy brain or starting over with a new podiatrist. That said, I only keep business cards for those doctors that I feel gave good medical treatment and that I would see again. If I’d never return to a particular doctor, I toss their card and don’t look back.

Pressing and Digital Files

In addition to the binder, I have a file folder on my desk for more time-
sensitive information, such as medical bills that need to be paid and referrals required for upcoming appointments.

On my computer, I keep a few digital files that I can update as needed, including:

  • Login information for all of my doctors’ online patient portals, which helps me keep track of all my usernames and passwords.
  • A narrative of important milestones in my medical history (i.e. when I was diagnosed with fibromyalgia, Lyme, etc.) that I update as needed, and print it out for visits with new doctors when appropriate.
  • My current medications and supplements. Most doctors ask for an update at each visit; printing out my latest list is so much easier than trying to remember each medication and dosage while in an exam room with someone in a lab coat staring me down. And since I’m continually researching potential new treatments, I keep a running record of information that I might want to refer to later or ask my doctor about.

Other organizational tools

  • Pinterest and When I run across an article that might be useful for my recovery, I save it to a special board I’ve created on Pinterest, or tag it for future reference on
  • Google Calendar: It helps me record my future medical appointments and sends me reminders, too.
  • Evernote: This phone app allows me to keep a running list of questions for my doctor that I can pull up quickly at my next visit.

When you’re chronically ill, it’s easy to get overwhelmed with even little tasks like managing paperwork, but having systems in place reduces the stress and helps you be more organized and efficient in your quest for good health. How do you organize your medical life? Please join us on Facebook and share your favorite tips!

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue, and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware, and Pennsylvania. She lives in Delaware with her husband and their many fur babies.