Notebook with a pocket on the left side shaped like lungs. There are papers in the pocket

Staying Organized with CF

Hello everyone! For my first article I’m beginning with something I have struggled with a lot when it comes to advocating for my own health and being my own caregiver: organization.

When I whip out my medication list I often see the practitioner's eyes widen. It used to be a piece of printer paper that had been stuffed in my backpack for a few years with a lot of pen marks adjusting doses, crossing medications off the list, and little doodles.

Spoiler alert, this was not effective.

However, memorizing is not my strong suit, especially when there are hundreds of things I’m trying to remember going into my medical appointments. It can be quite daunting when it’s a referral appointment, student doctor, or just someone who isn’t familiar with your regime. I had to find something to stay organized and so I came up with multiple solutions, their pros and cons, of how to stay organized while being chronically chaotic.

Binder

My first option I assumed to be foolproof, no different than the organization method I use for school, a binder. I purchased a slick binder with colour coded dividers and labels. Plus decorative stickers - very important.

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

I made a section for each clinic I see whether it be annually or quite often. In each section there is the contact information for the clinic, nurse and doctor. There is an address and map of how to get there, as well as if I need to pay for parking or not. I have also put parking passes in here so I don’t lose them, as this binder comes with me.

Another section I use for my pharmacy and information about when and where to order prescriptions. There is also a medication list for medications that have been prescribed by the corresponding clinic doctor. Any random papers they give me about nutrition, lifestyle changes or anything that does not require my immediate attention can go in this section as well. For papers that are requisitions, appointments or requiring immediate action, go in the front slot.

This is my binder style of choice and it has been quite useful. The cons lie in myself being the binder owner. It requires upkeep, it requires not losing the binder and it requires making notes inside the binder. If these are not problems for you I definitely recommend this route!

CF "business card"

My second plan of attack was to create a condensed informative card to flash around at appointments so if I forgot information, I had the basics on hand. I love this method for multiple reasons. First being that it stays in my wallet, or better yet, my phone case. I need my phone for directions to these appointments so there is no way I could forget something that lives inside my phone case.

Now, what is on this card? I have my name, my birthdate and my illnesses. I also have my vaccination status. On the back of the card, I have my entire medication list and dosages. When I first began this method I printed it out in fun colours and had it laminated. This didn’t last long considering the information on it had changed following my clinic visit. So from now on I just print it greyscale and keep a document easily accessible on my computer for changes.

I print it 3.5” x 2” in dimensions and pop it in my wallet. I try to keep up with this every few months and if I don’t have time, I just indicate the changes with a pen on the card.

Notes app

The third method I have used is the simplest. I type everything into my notes app during and after the appointments. Once I get home, I edit all the information I took into a more organized format so that I can understand it next time I need to look at it. The other great thing about it is the scanning feature. If I have any physical notes I can scan them into the app on the same page.

The only con I found is that if you enjoy autocorrect, you won’t after this. Nothing stays right so inputting information is time-consuming. You’ll have to pay extra attention when doing this. Regardless, I use this method when all else fails.

These organization methods have been proven to help me for years and I hope that they may spark more ideas if this is something you struggle with. These tactics have eased my stress going into appointments, keeping track of medications and overall feeling more in control of what’s going on and hopefully they help you too!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.