Medical Info: Why + How to Keep a Med Binder

How (and why!) to keep a medical binder, one source for your medical information. You can print or save this for when you have time. Just knock out one section when you have a minute. You don't have to do all of it at once, so don't pressure yourself to!

Why is a medical binder important?

- helps you keep track of all meds you've tried, failed, are allergic to, and which ones worked.
- helps keep track of times you DID see a doctor and exactly when and why you saw them
- helps family members or trusted people figure out what you can/can't have in an emergency
- helps a doctor figure out EXACTLY what your history is and how to help better, or *at all.*
- brings down certain medical costs by showing what you already did and don't need to do again
- doctors often see too many patients. insurance insists. they need to help quickly, accurately, EVERY time... but they are human, and the consequences for BOTH of you are terrible. Especially for you, though. One person will just "feel really bad." You might suffer a lot. How do they remember you AND remember your specific issues? They can't.

There are a lot more reasons but most of them distill down into these four categories.

We all think we'll remember exactly when we went to a doctor, why, what happened, etc. but... actually, people have been shown to misremember things, get things out of order, or just blank on a detail pretty easily. Keeping one binder is a portable way to keep everything documented and you can just pick it up and take it with you. No filing folders!

And what if there's an emergency like a car accident or sudden heart trouble, or a mini seizure that leaves you confused? Then YOU won't be able to give your information! Someone else has to. Someone else will not know exactly what you know. They won't know that you're allergic to common stuff like latex or aspirin. Or they'll be so scared or anxious that they'll panic and forget. We all think "That won't happen to ME!" ... until it does. And then on top of feeling powerless, you feel stupid for forgetting basic stuff.

Skip all that. Work on making a binder for all this. Anyone should be able to read through maybe 5 pages and have the basics down. That's making it easy and concise for YOU and for a trusted person in an emergency. 

Keep reading for the tutorial on how to make a binder. There should be one for every family member, especially kids, so a parent or guardian can just pick it up and take it if a child needs attention. 

Doctors aren't used to seeing patients come prepared like this. Some might think you're "overprepared," or trying to start trouble just because you... take care of yourself? Strive for accurate information? Man, how shameful for someone to have a history you can just *hand* the new guy so they can help you better! Don't take it personally. Some calm down when you tell them that you have limited funding and/or time and can't do the same things over and over again. You just want to help them see where you're at and if they want, where you've already been. A lot of doctors are strangled by insurance companies and are only allotted maybe 15-20mins per patient. You just want to make this easier on everyone, not waste time trying to remember if you were on 40mg of antacids or 20mg. Doctors were once med students! They understand the importance of accurate notes!

 

How do I make one, and cheaply?

Mostly, that's up to you. There are lots of methods that are different depending on what you, or your child or person you care for, need. I need lots of dividers for all the different specialists. Some just have a few for one big problem that they ended up seeing four different people for.

I use a 2" binder because it has some room to add later. Binders and dividers are even cheaper through Freecycle, Facebook groups if you ask, and thrift stores (where office + school supplies show up allll the time, except at goodwill + salvation army. check local thrifts!)

There are a lot of Youtube videos on this subject so if reading isn't your thing, watch video. I don't care if you get the info from me. I care that you are able to do this at all, by yourself or with help.

You will figure out what works for you by making the first three things:

First part: Medications + Medication history

- Current medications list for AM, PM, occasional-only

Current prescriptions including dose, broken up by AM and PM. Include other times if you have them. Include supplements. If a med is taken as needed, put on a list under that.

AM:
med 30mg
med b 20mg

PM:

med 30mg

med c 50mg

turmeric + c 100mg (or something, like DV)

-----

Med D 200mg (as needed in event of ... idk, migraines.)

- List of allergies, including foods, and specific side-effects (do you get hives? migraines? sudden fainting?) Some meds may have that as a sweetener or preservative. You can check with the manufacturer, too, especially for generics. 

- List of meds you have previously been on, when, what happened (why aren't you taking them now? Keep this short and readable to someone else.)

All of that usually fits on one sheet of paper, divided into 4. Make a few copies of this so you can hand a sheet to a doctor or nurse. Keep one in your wallet, folded up. Make sure housemates know that it exists so in an emergency, they can tell EMS or doctors. Say someone in a hospital gives you morphine, a common painkiller... but the list says you're allergic to morphine. You've never been in that particular hospital. Oh no. YOU are the one who suffers, even if they figure it out soon! 

Make that list and it'll help you think about what doctors you've seen (who prescribed the medications?) Then you can figure out when or why they were prescribed, which you'll use for the next list.

Second part: doctors + previous visits

You don't go to doctors a lot. That's fine. It makes the list shorter! But someone else still could really use a short, concise list of them. Plus, any NEW doctor you've seen can just verify that you were a patient and can usually get your records more easily. You might still have to sign release forms for that but they'll know who to call, and you'll be able to think of who exactly you saw, when you saw them, and why that was. I put everything into Excel but there are other programs like it for Mac AND open-source, free programs that do spreadsheets easily. Or you can just put it on regular paper. Graph paper helps me keep things straight. Microsoft Word is pretty terrible at managing this info because it has to be organized to be legible. This list is a ledger of your history.

Make sure you update this list. Check it maybe ~6 months in case of new doctors. I have it on a calendar as a "repeat event" on TickTick app. In each column (the top line on Excel) put these:

Dr Type (GP, rheumatologist, etc.)

Doctor's Name

Group (if not a private practice)

Phone number

Fax number

Address

Date last seen

Reason for visit

Anything prescribed, date

Notes (this is anything to add; good or bad aspects of visits, etc.)

Include doctors you saw even 10 years ago, even if no longer seen. Include why in the notes. Kind of like building a Master Resume.

Of course, you can 'parcel' this info out for all docs. I usually just bring the sheet with type, current doc name, phone + fax, date last seen printed on it. IF I bring date last seen and what the appointment was for, it's on the 2nd side of the paper with name/phone/last seen/reason seen before that to make it easier to read. What you were prescribed is irrelevant because that's on a separate list: the first list! <3

Don't worry if you don't have every single piece of all this information. Leave the space blank. You can fill it in later. Just get the basics set up! That's why I use Excel: I don't know fancy stuff, but free videos on Youtube show me how to add/subtract lines and columns, highlighting, etc. I can always add what I'm missing LATER. Anything is a good start!

The hard part, and I'm sorry.

 

Part Three: Getting your personal records and sorting through them.

I honestly hate this part the most but that might be the ADHD aversion to things not being super easy. 

The previous two parts help with this a lot, though. After you build your list of doctors, *use it* to identify if any belong to the same group. Like Florida Medical Clinic has 10 doctors but they're all one group... so I can get ALL my records from every doctor I've seen at one time. Some give records on a CD. Take the CD (you might have to pay; it's Florida law, but hasn't cost me more than $10 per CD.) Some give them on paper. That's the most tiring for me BUT it's the easiest for doctors.

Then separate them by specialty, if any, EXCEPT for bloodwork. So your binder should generally go like this:

Index if you make one, list of meds, list of doctors, bloodwork done. If you have a specific disorder or issue that is uncommon, a primer on it to hand out to new docs. Dividers for specialties. A divider at the back for medical studies on your needs printed out. Maybe a sticky note on what exact info you needed from that study, stuck to it.

Highlight the prescribing doctor on the bloodwork panel but put them all in one place. This is the ONLY set of records I don't sort by specialist. If you have gotten your bloodwork done via Quest, they have an option to download and/or print all of your results, going back YEARS. Select 'colour' options, with the values over time option to show how different things on your bloodwork changed. The colour makes it easier to read for you and your doctor, and the values over time make it easy for everyone to see if something is new or if something has been abnormal for some time.

Doing this has saved me quite a bit of money. Every doctor wants me to do the SAME TESTS over and over again! Because they're all different specialties and most 'things' can be explained away by common stuff like diabetes, bad diet, thyroid, etc. Sometimes, I JUST had the SAME tests only a month before from a different doctor! Since the current one can't see that I did those, and just *saying* I did it doesn't actually prove anything, being able to show the papers right then during the appointment has changed the tunes of doctors. Instead of having to pay to come back, IF I could pay at all, I now have real options because... whatever they wanted me to do, I probably already did it. If not, I could show that I haven't tried a thing yet... and it won't hurt, so yes! Please!

This is also the reason for the med list. Sometimes a doctor would try to put me on something I had already tried and failed... four years ago... with another doctor (often I was uninsured, so.) Now I can show that and show what happened. I have the doctors' list so the current one can contact the old one to verify. I don't have the prescription papers from years ago! Why would I?! But a minority of people are trying to push for certain regulated medications. Great. Now docs think we're *all* lying because they can get in federal trouble over a few people! A medication list helps show what you're on now and what you already tried very quickly so they can come up with new ideas and avoid ones that might be worse for you. For example, two years ago, one medication almost stopped my heart. A medication that gives the same effects through a different mechanism... did not. It worked well and was maybe $10 out of pocket. Any medication that works the way the first one did can kill me. Having that list helped a lot!

Everything except for the first three items and your bloodwork is in separate dividers. I like the ones with pockets in case I have CD records. Each specialist gets a divider. Dates go from oldest to newest, for me. I just flip to the back and offer the newest record if a doctor wants it. If some really want, they are welcome to go through the whole divider and see the history of something, oldest to newest. 

Don't worry if a record is damaging or has some issue. Doctors try to understand individual records when they are put into a greater context.

Story time! A previous rheumatologist got annoyed with why a young person was making an appointment and my feet kept cracking or needing to be adjusted because *everything huuuurt.* Especially when it was a cloudy day, about to rain! She was being sarcastic and suggested a wheelchair if I wouldn't stop snapping my feet. Two years later, a different rheumatologist got frustrated because I OBVIOUSLY had EDS + fibro, only NOW I had so many problems from both being untreated, that no one knows how I'm still here! (Anger. The answer is simmering rage and bitterness. I will fight the tidal wave of the terrible things in this world if I only have a teaspoon to bail out water. I will give everything I never had, and remember every good thing anyone gave me because they didn't have to, but did. That's how.) No place I've ever lived in is wheelchair accessible but I really do need one, for real. Instead, I have an office chair to use indoors. Way cheaper, more maneuverable, and still helps my joints. Plus I have proof that they're protective and reduces my pain, fatigue from pain, and injuries.

If that doc had just been shown a few pages saying that I'm just a hypochondriac with normal age-related fatigue, I'd have gotten the same thing I'd gotten since my teens: nothing. 

Bonus:

Paper records are great to request. READ them. Some things are done by computer and... they're wrong. One nurse put in my weight, ok, no problem! The COMPUTER decided that on one occasion, I was obese. Then I gained 5lbs. The computer said I'm... no longer obese?? And then when I checked what the records defined as 'obese', normal, underweight, etc., neither weight matched up with the categories. Obviously, the records were wrong. A phone call later and I could correct them. 

 

YOU know the records are wrong but the computers won't flag it, and doctors don't have time to proofread all that stuff. They deal with who's right in front of them. THEN they look back at history in the computer. That is the outside proof that is documented, not what is remembered or misremembered by someone who probably has a lot of other things in their life going on.

 

You need to be proactive and make the call when something is incorrect. Almost all of the time, it's some stupid database error. Just be 'customer service' polite about it. Keep the issue simplified for the receptionist ("Hi! I'm calling because there are issues with some of my records. Who do I speak to, to fix them?") and then talk to whoever they direct you to. If they transfer the call, try to get a number and extension for that department directly, in case the call drops. If you leave a message, do what they ask: it's usually name, birthdate, doctor's name, and phone number. Nothing else. I leave the phone number twice in case it gets missed or muffled the first time. Then, when they call back, tell them the records have issues. List what they are, and what they should be. "My weight is listed as ___ and this says to screen for obesity, but it isn't in the category of obesity in the office's standards." You might have to follow up in a few weeks to make sure the problem was fixed.

DO NOT make requests in emergency situations. I was stupid and did this some years ago. Tampa Family Health Centres almost killed me by giving me a drug they knew I was allergic to, but I'd never been on that specific drug so I didn't know it was in that class. I made sure that I told EVERY person that I saw about the allergy: the intake, the nurse, the doctor. It was black boxed on the top of my paperwork! AND YET. Taking 3 allergy OTC meds per day for other issues, like the mold in my apartment, is what kept me alive for a few days until I broke into hives everywhere and was having issues breathing. TFHC told me I had to wait a MONTH to see the doctor and get a new medication. I was extremely specific that I was direly allergic and had broken into hives. Again, they insisted I had to wait a month. I went to the ER.

Do not waste time if you are in an emergency. Not breathing or breaking into hives is an emergency.

 

It is nearly impossible to sue these idiots in Florida. The most I could do is leave bad reviews on Google Maps and if I had the time to work for it, file a complaint. You can file a complaint through the Florida Health Care Complaint Portal. I reserve this for dire issues and gross negligence, not for "the doctor was two hours late for my appointment!" complaints. 

Remember, there are two BIG goals: make things comprehensive for you, and make them easy for doctors.

 

Docs see what, a new person every 15-20 minutes, 8 hours a day? 16-20 different people a day, 5 days a week, 50 weeks per year. You are just one of them. You might* see the same person 2-3 times a year.

Being generous, 15 patients per day, 5 days/week = 75 people. 50 weeks a year with the rest for days off, vacation, sick days, whatever, 3,750 patient "events." You might be 3 of those. whatever, let's be MORE generous: lots of people never show up, so like, idk, 3600 people spaces. You are still 2-3 of those.

How are THEY supposed to do this. just... keep a list in their heads of all different people, many who they see one time every 6 months or so, and all the different things that CAN be wrong AND all the things that are specifically wrong with each of us. This isn't fair. This isn't treating *them* well and is hurting US. And doctors need doctors, too? wat ::slams Dislike button:: 

So... at least keep SOMETHING. Even if it's JUST the doctor and med list. The binder is always a work in progress. Good luck!

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