At my last doctor’s appointment, I was given homework. I was tasked with creating a “medical notebook” to organize the various documents that patients, like myself, find themselves in abundant possession. I dismissed the suggestion at first. -Ha! When am I going to have the energy to do that? I’ve got everything on my smart phone anyway.
After forgetting about it for a few weeks, I looked up some examples and got to work. Right away I could see the benefits.
▫Paper is infinitely more user friendly than a smart phone.
▫Paper does not run out of battery or lose wifi.
▫Paper is easier to share.
▫No more scrolling furiously through my phone trying to remember where I saved something. It’s neatly ordered and indexed now.
There are some helpful printables here you can use to get started. I used the cover page from this link, but the rest I really needed tailored to me, so I made my own custom pages.
WHAT YOU NEED
▫1, 3-ring binder: I used 1.5 inch, you can use a bigger or smaller binder depending on what you intend to include.
▫Index dividers: I bought 2 different kids of dividers. One with pockets, and some smaller cheapo ones I picked up at dollar tree. They make perfect subdividers. I only used one pack of each, but you might need more.
▫Sheet protectors: Lots of these bad boys! I do not want my hard work getting torn up.
▫Pens: You probably have these already lol.
▫Notebook paper: For notes 😉
▫Printer paper: If you chose to print at home. Also, keep in mind you can always hand write many of the things I chose to print.
▫Paperclips: When a stapler just won’t do the job.
▫Post its: They make great reminder notes, and super convenient for jotting down quick info to hand off to others.
▫Hole punch: Probably the most important thing besides the binder.
▫Binder pouch: Keep all your supplies at hand.
First, you will want to sit down and brain storm a bit. How do YOU want this organized? What are your health issues? What info do you typically need in an appointment? What things or info have you ever wished you had in an appointment? Keep in mind this is going to grow and evolve as you use it. It needs to fit your needs and be easy for YOU. Make it your own!
When you visit a new doctor, what is the first thing that happens after you sign in? You fill out a big stack of forms asking you the same questions over and over. The nurse calls you back and asks all those questions again. Then the doctor will ask once more before you’ve even had a chance to discuss the reason for your visit. Yeah, that is a waste of time. Type it up, make copies to hand out. You, the nurse and the doctor should have one. (If you typically have residents or med students present at your appointments you can chose to print one for them as well, though I wouldn’t. Save the paper lol 😉 ) Your basic info doesn’t change much, so you’ll probably only need to type this out once. Put whatever vital info you know your doctor needs. Here’s some suggestions:
▫Allergies (food or drug)
▫All doctors- at least their names, phone, and fax numbers. (Do this for primary doc and specialists.)
▫Pharmacy address and phone number
▫Your insurance info (You could even include a photo copy of your insurance card.)
I also have a section on this page for “appointment goals.” These I edit before an appointment, and it has been a big help. It keeps me from forgetting anything I needed to discuss with the doctor, and it keeps the doctor on the same page. I typically print 3 copies before an appointment, so I try keep it limited to 1 page.
This section has all my ICE numbers, both my doctor’s emergency numbers, and my family’s. I have the ER protocol letters that I had scanned into my file at the hospital, emergency injection instructions, and “Glucocorticoid medication for surgery and dentistry.” (If you can think of anything I missed let me know!)
Here I have my medication schedule, “Circadian rhythm dosing.” As well as a tab for each of my meds with general drug description and other pertinent information. For example, under hydrocortisone, I included info about the problems with generic Qualitest, as I think that is a pretty important detail when discussing HC. Add anything you might want to discuss about your medications. I know for people on more numerous medications, this may be no small feat, and there is no way you are going to have enough dividers. If that’s the case, try grouping your meds by condition, or whatever makes the most sense to you!
I’ve got my next orders in the divider pocket, and previous lab results in the rings. This really takes the BS out of doctor visits. Always have copies of your labs, whether you print them online, or have your doctor CC you on the order, or receive a copy directly from your physician, you not only have every right, but a responsibility to yourself to keep copies of your results. This way there is no mystery. You will always know your exact values, as opposed to the vague, and not all that reassuring “Everything looks okay.” some doctors tend to give. You simply have more time to analyze than they do, use this to your advantage.
Okay, obviously not all of us are going to be able to lug around all of our medical records. If you can hole punch and get them all in there, that is super. For the rest of us, make sort of a “highlight reel” (for lack of better words.) Include hospital stays, noteworthy procedures or imaging (perhaps the tests that diagnosed you,) surgeries and post op summaries, etc. You get the idea. It’s okay if you’re missing some things, include what you do have.
This section is pretty simple. It’s a log, (piece of notebook paper) where I can document when I visit, or communicate with a doctor’s office. If you’ve ever had a doctor’s office ignore your phone calls, you will understand the benefit of keeping track of when you called and who you talked to. It’s also helpful when referencing past appointments to know exactly when they occurred. Next is just a few sheets of notebook paper for jotting things down. Always take notes.
I track my health with a journal app and with my fitbit. I record my daily steroid doses, any new changes to meds or supplements, my symptoms as well as general notes about the day. Then I rate it on a Quality of Life scale. I can compare this data to my fitbit, particularly the heart rate, sleep and activity to help me discern patterns. I can more easily see what is helping and what isn’t. I started tracking my health a year ago, and it has been a huge game changer. You don’t have to use an app or a fancy fitness tracker or print spreadsheets. A spiral notebook right here will do just fine.
Why would I possibly have a section for blogs and social media in a medical binder?
Without social media it is unlikely I would have ever come across another person with adrenal insufficiency. Thanks to online support groups, I can learn from people all over the world with my condition. A blog, or a post in a facebook group can hold valuable information, even a clever meme can help describe a symptom or feeling. Don’t underestimate the value of social media, you need every resource in your arsenal.
This tab is small right now, but it is going to grow rapidly, as I have a pretty sizeable stash of research going. My advice here is keep it relevant, things related to your appointment goals you think you might actually have time to discuss. Any articles you print in this section need to come from credible resources, blogs, Facebook, Wikipedia, and anecdotal evidence will not give your opinion any weight with an MD if push comes to shove. Scholarly articles tend to be long, so try to print only the abstracts and findings, or if you need the whole study, consider printing them double sided. Remember to highlight and flag your talking points so you aren’t fumbling around looking for a particular quote or statistic.
Other than that, all I’ve got in here is a 3-ring binder pocket with some pens, post its, paper clips, and a highlighter. Just to make sure I’ve always got my ish together.
Yeah, you might get some funny looks from nurses and other patients. It’s rare to see a patient who is also a well informed, organized, self advocate. Allow them to be amazed by your organized glory.
Warning! This is also going to show you what kind of doctor you really have. Not all doctors work well with self advocates. They may not understand that you are trying to help, not second guess them. A good doctor will welcome the information and will be a helpful partner in the management of your health. You might also find you are better respected by medical providers when you are prepared and organized.
Most importantly, have fun! Be creative with it!