By Dorothy Vetrano
In January, Shawna Nielsen posted about her “Top 10 Tips for the Newly Diagnosed.” One of her tips was to create a medical binder. I’ve done this, and I highly recommend it. It has become a lifesaving tool for me.
Upon hearing the news of my dermatomyositis diagnosis back in 2020, I became extremely overwhelmed with the information coming my way. Within a month of my diagnosis, I was scheduled for weekly x-rays, scans, labs, biopsies—so many tests and doctor visits. With countless yellow legal pads, Post-It notes, and scratch paper, trying to keep track of it all, I had paper everywhere. I became confused, lost, and didn’t know what to do next.
Given a few days to process the information, however, I was reminded that while I may not be able to control what happens to me medically, I can control how I react and respond. As a teacher, I use lots of binders to help me stay organized. I decided to use this same approach in my personal life and started my medical journey binder.
My three-ring binder has plastic dividers with pockets where I can insert words of inspiration, lists of current physicians and medications, and upcoming lab or test orders for quick access.
The first pocket divider of my binder begins with “Words of Inspiration.” This might be a prayer, a poem, or a quote. As I wait in the doctor’s office, I read these inspirations to clear my mind and remain calm for whatever lies ahead.
Behind that pocket is a current list of my medications (including vitamins and supplements), dosage, how often taken, and the date I started taking the medication. This is followed by a list of my physicians, their contact information and, more importantly, the names of their nurse practitioner and staff. The NP’s and staff are the lifeline to your doctors. If you establish a good relationship with them from the start, your visits and future appointments usually go relatively smoothly.
Each doctor then has their own divider, which includes a few lines of how I feel the day or week of my visit, current labs, test results, medication changes, questions/answers, summary of the visit, orders for new labs, and the date of my next visit. Copies of recent test results are on hand to give to all my physicians so there is no duplication of tests.
Following the doctors’ sections, is a divider with copies or notes of yearly tests such as CT, PET, bone density, chest x-rays, and results of any surgeries. This too is helpful as I can share this with all my doctors.
At the end of each year, I then file the year’s medical information in a manila folder and keep that at home. This avoids having to carry all this information around with me. However, if a doctor asks, “when was the last time you had…?” I need to be able to refer to that information quickly.
This leads me to my final divider titled “A Year in Review.” It’s a quick summary (maybe a page or two) that lists in chronological order the date of the doctor’s visit, doctor’s name, and type of visit. You can also create a medical file in the notes app on your phone to document this information for quick access.
In looking back, I realized how creating this binder has made my life easier and my doctor visits productive and efficient. All of my doctors love it and every now and then they smile when they see me walk in with my purple binder.
Dorothy Vetrano is grateful that she’s doing pretty well with her DM overall. She lives in Houston, TX with her loving and supportive husband and two four-legged babies. She’s a teacher of students with visual impairments who has worked with the visually impaired for the past 32 years.