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Appointments, refills, infusions, fluids, treatment changes, phone calls, medications, messages, and more. There is so much to keep track of each day in my job as a patient with myasthenia gravis (MG).

I have to create organizational strategies to stay on top of it all. It can be overwhelming waking up and trying to remember what I need to accomplish that day or week. Trying to stay organized helps me feel less overwhelmed and remember what I need to accomplish. Living with a rare disease can be chaotic, but the goal is always to find ways to keep the management of my disease at least running smoothly.

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I’m not a very organized person by nature, but using the organizational skills I learned in my career has helped me as a patient. I’m a former academic and educator, and I always had my planner with me to keep track of everything. I still can’t live without my planner. A lot of people use a digital planner and calendar, but I’ve never found that useful. I have to be able to write things down and see them in physical form. I use my paper planner to keep track of my schedule.

My entire life revolves around my infusion schedule, so I need to be able to know where my infusions fall months ahead to be able to schedule appointments. I also use it to set goals each week and month. I try to write down everything because I can’t rely on my memory to keep track of dates and times, phone calls to be made, etc.

I also use some technology to help me stay organized. I use my medical group’s app to keep track of appointments and stay in contact with my doctors. Not every patient uses those apps, but if you are a professional patient like many rare disease patients, those apps can be invaluable. The apps also let you look at test results and medical notes. 

As an active participant in my care, I need to keep track of important things like that. I also use online documents and text messaging when I can. I have a medication list/medication schedule in my Google docs that both my husband and I have access to. I need it when I am hospitalized, and I am regularly asked about that list at appointments and other medical places. It’s an absurdly long, complicated list, and I have no chance of remembering it all.

My husband helps with phone calls and other medical administrative tasks, so he needs access to that list too. I also use text message alerts from my pharmacy for medication refills. I have trouble remembering which ones need to be refilled and when, so those text messages are always helpful.

I live by a pretty strict schedule every day. That really helps me remember everything, and my body is dependent on that schedule to function. I take my medications at specific times every day and eat and drink fluids on a specific schedule as well. I also rest on a specific schedule. All of that helps me remember to get enough food, fluids, and rest each day as well as take all of my medications, which I organize in a pill dispenser each week

 It may sound strange to need to remember to do such simple things, but with the fatigue, I experience with myasthenia gravis, it can be difficult to remember even basic things each day. I know that other patients also experience difficulty remembering to do basic tasks throughout the day. That strict schedule really helps me.

When you are a professional patient and live with a complicated condition, organizational skills are essential. I have had to fine-tune my organizational skills as my disease progressed over the years. But staying organized helps me keep track of the simple daily tasks and the big-picture tasks that are required to manage my disease.