Thread by @Nicole_Lee_Sch

A while back I wrote about my medical binder and what I bring to appts as an individual with a complex, multi-systemic genetic disorder. Some people noted that a model could be helpful. As promised, here's a thread on my medical record binder with a model at the end. 1/17

On the first page you'll see a Table of Contents. I keep this at the start of my binder to remind myself where I've slotted in all my records, and I use colored divider tabs between sections and doctors. 2/17

I begin with a Short Records section. First you'll see a Meeting Notes template for new appts. It prompts you to fill in info about what's going on, your case history, and what you've tried in terms of therapeutics. I find this helps me advocate for myself with new drs. 3/17

Then the next few pages are templates I use to keep track of my diagnoses, medications, members of my care team, allergies, and surgical history. I bring copies of these to each appt with a new provider and give them the copies directly. 4/17

Having these charts is so helpful when I have brain fog or when I need an advocate to help me write out info onto new forms. Most of the time I just hand these copies in with intake forms and write "see attached." 5/17

The rest of my binder is basically records. So if you're using the Google Doc, go back to the TOC to see how I organize things. I end the Short Records section with any records that I want the doctor to copy or scan. 6/17

This includes info regarding the diagnosis I'm securing care for, or the diagnostic procedures that I've already gone through for this issue, as well as recent labs and notes from most recent appts from current providers. 7/17

Then the next section in my binder is detailed records. I usually request or print records after appointments, and I file them in the detailed record section. I organize mine based on body system, then doctor, sorted from most recent to oldest. 8/17

I go head to toes because again, brain fog, and that makes the most sense to me. I start with records from my GP, then shift into specialists who deal with my whole body (e.g. pain management) then head to toes from neurology to gynecology. 9/17

Sorting the records from most recent to oldest means I can quickly flip to the notes and pull content out if a provider needs to look beyond the short notes I've compiled. And it keeps me from flipping endlessly through outdated materials. 10/17

The next section is where I store lab results. It's helpful when a doctor asks "have you ever been tested for x?" I've been running into issues with malnourishment, so I also have a chart detailing the names of tests I've had done, dates, and red flags 11/17

The final section of my binder is titled Other Documents and it's where I store all my content that is not likely necessary for individual visits, but is helpful in any medical emergencies. I feel best having a copy on me for all appts. 12/17

I start with important family history because I can never remember in the moment what exact diagnoses my grandparents and aunts/uncles have had or their ages when diagnosed. 13/17

Then I have emergency room protocols that are signed by my allergist. I use documentation from the Mastocytosis Society bc I need certain treatment for allergies. I also include info on skin fragility and EDS because it can impact wound healing which is important to flag. 14/17

Finally I end the binder with a copy of my advanced directive (copies are also held by those granted the power to enact the directive). It's probably a bit of overkill, but I feel better for having it in the binder just in case some emergency does happen. 15/17

I hope this is a helpful model, and if you feel overwhelmed by this I totally get it. My mom started this for me when I was still a teenager, and I am very very thankful for her foresight and preparedness. 16/17

Feel free to download the short template here and best of luck organizing your own records! 17/17 #DisabilityTwitter #Disability
docs.google.com/document/d/1uU…