PSA: AI is everywhere. Check your medical records OFTEN.
Almost every office I go to is now required by corporate to use AI transcribers. Regardless of what CCHFreedom says, that use is buried in the paperwork you sign before every visit. It's usually in the Privacy notices and consent sections. If you don't or can't read them, you don't notice it.
Besides the ENTIRE privacy and data mining problem, it's an immediate issue for every patient.
It is not a doctor's choice. If they want to keep their jobs, they do what corporate says.
Yes, I can (sometimes) opt-out. No, they do NOT always have to treat me if I do. The paperwork insinuates that it's like any other TOU: if you don't like the rules, find another provider.
For y'all healthy-ish people, YOU don't have a problem. You will go somewhere else. If your records are wrong, you can probably sort it out. You might see two doctors a year.
That's great!
I see half a dozen a month. Sometimes more.
There are maybe a handful of doctors in three counties that I can see for some disorders. I may have to go across the state for a minor surgery... when I find a doc and get my insurance on board.
I do not have the luxury of seeing a different rheumatologist with another group if I want to. Also the Other Group also uses AI transcribers now.
Check your damn records.
This is for YOUR safety but also so insurance has less to deny.
Across just two or three office visits, I have become a 54(?) year old man who is in my 30s and also AFAB, and apparently I injured my ribs in a fall, necessitating an orthopaedic hand therapist. (WRIST, not ribs.)
Yeah, yeah, "but- but- the doctors are really at fault!!! They're supposed to read it!!!" With what fucking time.
You know who notices that? My insurance company. Who has all the fucking time in the world.
The REASON these AI transcribers are required by the company is to "save time." Because doctors are only given a few minutes for notes because insurance companies want to push more patients into exceedingly small appointment times.
So INSTEAD OF TYPING THE CORRECT THING THE FIRST TIME, they now have to use these stupid fucking AI programs to write things *incorrectly,* GO BACK, re-read everything in SECONDS, look for errors that could be anywhere, and fix it.
And if they don't, that isn't the AIs fault! It's THEIRS!
Companies do this to "maximise profits." I bet insurance companies push it to get more revenue in copays, and also because it increases chances of total denial of payment. They all make huge profits while WE suffer.
I don't know why there's a constant problem with doctors quitting or people going into any other fucking field.
Everyone, even "healthy" people, should have some kind of medical binder.
A medical binder can be very simple, with basics like "current list of doctors, vaccination dates, any major ongoing health issues," or they can be more complicated for chronically ill people or anyone with an ongoing physical issue. You can have a whole family in ONE binder if everyone has relatively few needs.
"Mental health problems" are also physical, by the way, so they need to be included. Last I checked, the brain is, in fact, part of the body.
This tutorial is made for chronically ill people. It also helps carers who need to manage others.
If you think "oh, it'll be fine, I'll keep it in my head- this is SO important!" Don't. You will forget. You will misremember fine details.
If you think putting down "main diagnosis" is enough, it isn't. 10 people with the same disorder can have 10 different sets and severities of symptoms. Your doctors do not know which ones YOU have. You need to keep track. These excel sheets help do that.
If your doctor sees this when they walk in, some will dismiss that they even have a need (they do, and that's a poor attitude) and others will tell you how relieved they are that you are organised and can help yourself. That same organisation helps them. Internal records are notoriously BAD, and communication between specialists might as well not exist.
Keeping a binder like this solves all that.
What are the main binder components?
You can do this part however you want!
I use page protector sheets for everything so I can pop them in and out of a binder when I need to. I recommend them. If you buy the thicker, higher quality ones, they last for years. I think I last bought some 6-7 years ago.
On the first page, I have a basic profile:
- Name (first, middle or middle initial, last); people from Arab or Latinx backgrounds may have multiple names. Put down whatever is appropriate for your tradition, that your friends or family would use. Underneath it, you can put down whatever your ID uses.
- Date of birth (I write it in standard American format: 6/18/yy AND with month spelled out, day as number, year: June 18, year.)
- Blood type (important! in case you need it quickly!)
- Current address
- Emergency contact name, phone, email
- IN BOLD, POSSIBLY ANOTHER COLOUR:
MEDICAL CONDITIONS AND MEDICATION ALLERGIES (IMMEDIATE + SERIOUS, LIKE DIABETES OR MORPHINE ALLERGY. Anything that can quickly spiral out.)
Ideally, I'd have an index of the binder, but let's be honest y'all I am exhausted and ... never quite got to it. Filling in the details has been Enough.
All Excel sheets are right after that. This makes them easy to take out immediately. Helped a LOT on my last trip to the ER, which was only weeks ago. Saved me a lot of pain from adhesives, wounds from IVs and unnecessary punctures that don't heal well, etc. They can help you, too!
For the rest, I use divider sections! They have tabs labelled and all dividers have pockets. These are for imaging CDs, thicker papers, etc.
GENERAL + VACCINES: any bloodwork printed out, any paper or documentation that came with a flu shot, original covid vax proof, whatever.
MAIN DIAGNOSIS DESCRIBED IN EXCEL SHEETS: this also includes some handouts about the specific disorders, made friendly for laypeople so they can be read quickly, but with a SOURCE on it so that person can do more research. Remember that your doctors DON'T HAVE TIME FOR THIS. It isn't their fault! But it doesn't help you, either. You need to be your best advocate.
ALL NEXT TABS ARE SPECIALISTS. Group them how it makes sense to you. If neuro + GI makes sense to you, do that! If vascular specialist + diabetes management makes sense, do that! There are no wrong answers here.
LAST TAB IS FOR STUDIES Studies, helpful info, things like pamphlets about Celiac disease or COPD management or whatever.
These seem "extra" but will actually help you.
For example, I have studies about how autism isn't a "mental disorder." It's a neurotype that informs the entire body, like injuries, GI disorders, migraines, 'clumsiness,' etc. When a specialist tells me "oh, I don't deal with autism, I'm a gastroenterologist," I can take out the specific one with the gastro effects of autism in focus and say, "Yes, I know. 1 in 4 autistic people have a major destructive GI disorder." Recently, a doctor told me that they don't deal with skin issues, and I patiently explained that yes, I know. The reason I am demonstrating how easy it is to bruise the skin, and explaining that it's a connective tissue failure, is because you intend to do minor surgery, and the connective tissue holding organs together is far more fragile than my skin. Where it WON'T bruise to indicate damage. So how will you know until there's a puncture or other serious injury?
I'm not *accusing* anyone of being bad at a job. I am saying there's a problem caused by this medical disorder and we need to make a plan for injuries- then be grateful if those don't happen. Better safe than sorry.
Many people will not immediately think that, so you need to be direct about it. A battle of egos is not one you will win. If there's a lot of pushback or passive-aggression, you are not a bad patient for finding someone who matches your approach.
Copies of all of these studies follow a format on my computer:
DATE - Study Title or Point of Study because they have really long titles (SOURCE ex. NIH, Harvard, Cleveland Clinic)
You may give hard copies to interested doctors and need to reprint them. Putting the dates first will let you know if a study is now outdated and there are others which are newer, or that explore more deeply. Putting the source at the end tells you immediately, without opening it, where you got that from.
Excel pages to set up for your binder. What YOU track might change!
Some doctors might be intimidated, think you're making shit up to look really sick (until they read supporting documentation... also, fuck those guys, you probably don't need them,) or actually really LIKE that you keep track of issues and advocate for yourself.
It isn't enough to just say "I'm sick, you're the doctor, you fix it!" It sucks but most often, it's a two-way collaboration. They need feedback and insight on you, personally, to have ideas on what to do that work for you. It benefits you to have a list of specific symptoms and diagnoses, and it benefits them to look at those lists to see what issues you do and do not have... and this guide can help figure out what might happen next.
These Excel sheets look intimidating- but I promise, they aren't. Imagining that you have to fill them ALL in like, two days, is unbearable (to me.) Do it a little at a time, when it makes sense. Every single doctor's appointment, I tell myself, I'll just update it when I get home. Do I? No. Has it been like, 6 years of me saying I'll do it- even just once a week? ... Yes. Do it when you have energy, have brainpower, and *start somewhere.* You can add and delete lines and columns as you go!
Just start SOMEWHERE.
I use one tab per subject. Tabs are at the bottom of the excel sheets. You can rename them. It does not matter what order they are in, really. Each one can be individually saved as PDFs so you can send them to other offices easily.
For me, these are the main tabs. In each section is described the columns (subjects across the top line.)
All writing is 14pt minimum. Large titles are usually 16pt. This makes it easier to read.
The top line is centered and merged for a title. It is in CAPS LOCK and BOLD. The second line of categories is always BOLD. I usually add a faint background colour to each to keep them broken up visually. I avoid green/red since it's the most common type of colour blindness. In this example, it is orange and palest purple (still possible for colour blindness, but not as common.)
Doctors like things set up MOST RECENT -> OLDEST. I have these set up the other way to establish a timeline and progression. Putting events in order helps me organise. These are smart people. They can figure it out. My dates are OLDEST (top) -> NEWEST (bottom)
All pages are set up in the same general format.
DIAGNOSES:
date first officially diagnosed / primary diagnosis / comorbidities or symptoms / ICD-10 if it's on your paperwork / who diagnosed you / their specialty / notes
MEDS + VAX:
There are two sections on one page.
The top section is CURRENT MEDICATIONS:
date (first prescribed) / medication / how much / how often / what for / doctor who prescribed it / notes (side effects you specifically experience)
The bottom is VACCINATIONS.
date you got it / vaccination type / first dose, only dose / what for (flu? tetanus? hpv?) / where it was done / notes (swelling at site, nausea, if your skin got itchy, you might have an allergy, etc. they need to know that for your safety.)
SURGERY + HOSPITAL:
There are two sections on this page.
The top section is SURGERY:
date / exactly what surgery name / who did it / where at / what for / any after effects (example: turns out i can't have lidocaine! that's new! also apparently it caused sudden intense sadness and I had to increase meds temporarily. fun. they need to know that.)
The bottom section is HOSPITALIZATIONS:
date / diagnosis? / hospital name / location / what for (nausea, passing out, childbirth) / notes (any surgeries or ORs; "see surgery"; complications of diagnosis B; see "Dx Nexus")
IMAGING + BLOODWORK:
Keep track of all imaging and bloodwork so you don't have to do it several times for the same thing in a short period. Every single doctor wants to check my thyroid. If I did that, I'd have like, 8 thyroid checks a year. lol no.
First section is BLOODWORK:
date / specific panels done / who ordered it / where was it done / anything really unusual?
Bottom section is IMAGING:
date/ specific image type / who ordered it / where was it done / why was it done / anything unusual (like discovering idk chiari malformation, clogged artery, copd?)
EYE + DENTAL:
Two sections, both same format:
date / specific procedure / doctor / specialty (optometrist, opthamalogist, dental surgeon) / notes
This can be general, like "tooth cleaning" or "eye exam- glasses." Or you can specifically put in "dental scaling," "root canal," whatever. Notes could include "Diagnosis A symptom 3 accelerates tooth decay."
PREV. MEDS:
date (first prescribed) / stopped (if known) / medication / how much / how often / what for / doctor who prescribed it / notes (side effects you specifically experience, why you stopped)
DOCTORS:
two sections: CURRENT and PREVIOUS
date first seen / group or clinic / doctor name / specialty / address / phone / fax / notes (retired, moved, you moved, doesn't believe in celiac disease???)
ERRONEOUS DX:
date diagnosed / erroneous dx / actual dx / notes
try not to rant here; save it for your blog or journal. but tbh sometimes, yeah, i can be very pointed about things and some people get upset or mad about it. idk, i can't sugarcoat a thing that i suffered from because it makes you feel sad sometimes. deal with it. Doctor really actually messed up? Name names and be direct.
The idea is to demonstrate why there's a distrust issue and what medical PTSD is like. DO NOT give this page to any doctor you haven't established well with. It can scare them off, just like a guy who starts a date by talking about how all his exes are crazy. Keep it for YOURSELF. Read it when you need to remember that you aren't crazy.
------------
How do I do all this stuff?
There are FREE tutorials on how to do all different things that might help you in excel, like change the colour of every other line, or making fonts larger. How to print ONLY a page without it getting cut off. Things like that. <3
You've seen the binder tutorial, the excel file stuff, and read the commentaries and process for generally managing data.
I got some questions about what to do when all these papers are scanned into the computer. How are they sorted, how do you decide what to keep, what do you delete?
The secret isn't JUST how I do a specific thing. It's also WHY I do specific things. What was the thought process that informed the decisions I made about my needs? How can this help you think about your process, what might be stopping you, what things might be manageable for you? What things that help me would be useful for you?
This is in four parts:
Specific equipment you want
Obstacles I face when sorting and scanning
Specific systems and types of data pertaining to medical issues.
What to delete and when!
There are some specifics I use for storing items digitally.
A reliable solid-state hard drive. Solid state drives are resistant to bumps and accidental drops, but think about getting some kind of appropriate prevention for drops anyways.
A physical notebook, like a 'real with paper' notebook.
Pens. I use G-5 pens because they have refills online and they come in a bunch of colours, so I can colour-code notes.
A scanner with both top-loading and flatbed capabilities- this helps SO. MUCH. when you have short piles of one-sided papers you can just load up and scan into one file. With a flatbed only, I had to INDIVIDUALLY scan 5-6 papers for one item, create a whole FOLDER for them, and number them because compiling them into one file actually took a lot more time. ::dies::
2. Now remember that I have ADHD.
One thing ADHD involves is 'erasing' the part of memory that tells me what routines I have, how to do them, items I need to do the routine, order of operations, etc.
I make up a whole new fucking system every god damned time I need to do something. CLEARLY this is not only exhausting, but it only works on "good brain" days! Otherwise, my brain will just go "too hard, no dopamine, no reward, no drive" and do literally anything else (because those things are able to be accomplished.) Doesn't even matter what it is.
Skincare? I need a post-it note taped in the medicine cabinet to tell me what items to do, in what order. There's AM and PM in two separate lists, clearly distinguished, because sometimes my brain won't do it. I have to keep all items in close range, many visibly on the counter (which I hate because it's messy) but if they aren't, I won't think to use them and will skip to the next thing on the list. Skincare products DO expire. They chemically break down. So every day that I just don't use something I bought, say hello to the ADHD tax.
I still need to read boxes of chicken nuggets that I have made the same way for years. I have task lists of chores or I will just *forget* that I haven't cleaned the bathroom in 3 weeks... because you can't *see* germs, so it doesn't occur to the brain to do that.
Out of sight, out of mind.
now how hard do you think managing paperwork is.
I do not like that. I get upset with myself every single time. And yet.
protip: if hating or resenting yourself worked, you would be perfect by now. learning to 'let go' also is a constant work in progress.
wait. isn't that just procrastination?
Procrastination is where you think, "Yeahhhh I need to clean the bathroom for my own health and safety but... Taylor Swift has a special on tubi right now... I'll do it tomorrow..." You *can* do it but you just don't feel like it, so you don't.
executive dysfunction is "i really need to brush my teeth. i feel disgusting. my mouth feels disgusting." and not being able to move, or you get distracted by a text message a friend sent and literally just *forget* for a few minutes, and then in 10 you think, "ugh, why are my teeth feeling fuzzy. i need to go brush my teeth..." The dopamine that rules executive dysfunction is just not working right now.
I genuinely mean to get to that stack of papers. Every day. For a month. And every time I start to do it, ugh, I need a drink, oh look- the dishes are in a pile, let me get those, the counters are dirty... Suddenly another day is gone and I have scanned 0 papers.
Because scanning the papers requires
- remembering the system or to set up a system
- BUT WAIT! I know that I ALREADY set up a system!
- And now I can't remember the system
- If I make a NEW "temporary" system it won't match the OLD one
- and what's even the point, because I'll just have to go back and fix it all so it matches! Double the work! Double the exhaustion!
- And I can't just scan and rename later because why scan all these papers if I have to go back and individually open each file to see it, REMEMBER all the details I need from it ACCURATELY, so that I can rename it, which I can only do once it's closed again?!
- i_give_up.exe
And then I get distracted on top of that! which is a common feature of how ADHD works! Which is WHY IT IS A DISABILITY. This is not voluntary. There are no holidays.
I need medication to take the edge off, and thanks to neurotypicals, it's almost impossible to get. So MY life is running down a fucking drain while some asshole in congress whinges on about 'what if my over-privileged son munches on adderall in college, a thing only people with real money can afford to begin with? think of the CHILDREN!!!'
... anyways...
Why a physical commonplace book, then?
One thing my commonplace notebook does is tell me how to name files so I don't just make something up each time, and then get frustrated later when I can't find what I want. See that whole problem outlined above? My notebook solves that.
Apparently that's what catchall notebooks are called now, by the way: "commonplace books." I tend to remember things a little better if I have muscle memory attached to them. I use an actual half-size notebook, cheaply made by Paperage. It's stupid but if it's in a colour I like, I'm more likely to USE it. I used to use a half-size binder so I can rearrange paper in it, actually. Do whatever works. What you LIKE is what you will stick with.
I have a whole section called "Hard Drive Naming Conventions" that details each type of data, like "Music," and how to name that file so they're all the same. Helps me find things way faster.
3. Types of data
ALL DATA:
Scan in directly to desktop folder named SCANS -> Name -> you can sort these on the external hard drive later.
Maximise your brain time by scanning in and naming papers. "Brainless time" can happen later, when you're just sitting down and sorting stuff.
For residence-related medical:
These are papers like ESA or service animal proof, copies of your lease, all move-in photos and video before your stuff is there, all move-out photos and video, etc. ANY correspondence regarding disability accommodations must be downloaded AND saved in your email. All of it should be in WRITING- absolutely NO "verbal contracts." None. Ever. Writing is your only friend, preferably sent to your email from a landlords' email address.
Make a folder with the street address or partial street address:
1234 Main Street or 1234 (Complex Name)
Keep all these documents in there. You can upload these to a private, secure cloud like Proton Drive, or you can e-mail them to yourself with specific names in the Subject line to make them searchable later. That way, if something goes wrong, you have a copy.
For medical records:
Do NOT EVER EVER EVER put your fucking medical data onto a fucking Cloud or some shit. Ever. jfc. Don't be putting it on Google Drive or iCloud or whatever. Proton makes a pretty good secure product for Drive, but idk, even then. DO keep multiple copies, one on your regular drive and one on an external drive.
MAIN FILE: (Name) Medical
TWO SUBFILES:
-> Studies + Handouts:
Date Title or Point of Study (Source) ex: 9-20-25 Pain Management in Hypermobile EDS (Harvard Medical)
-> Medical info by years: (I use Before 2020, 2020, 2021...)
-> Date What Is It (Doctor) ex: 9-20-25 CBC Thyroid (Quest Labs)
I used to break these up under each year by specialty, but it wasn't useful. In fact, it often arbitrarily separated things that influence each other and made files harder to find. I would have to guess which doctor ran which thing, and which ones I'd see in what order. Putting everything in ONE folder by date was so much easier!
For receipts
I moved the folder above into a tax category. I now have a separate folder system for all FINANCIAL items. In the current year labelled, all medical receipts go into a folder for MEDICAL RECEIPTS. This is because some of us can possibly get tax breaks on medical expenses.
You can sort these another way. It doesn't matter, as long as it makes sense to you, it's easy to find, and you will use the same system over and over.
FINANCIAL:
-> 2025:
-> MEDICAL RECEIPTS:
Date Item or Place Receipt ex. 9-20-25 Orthopaedist Foot Receipt
-> EOBs or INSURANCE SUMMARIES:
Month or Date - Insurance EOB ex. September - United Blue Aetna EOB (which can show some financial stuff. The whole folder can be moved later if need be.)
Insurance info has it's own folder. That is because insurance info should not be mixed with your actual data, pertaining only to you. So that might be something like
INSURANCE:
-> YOUR NAME (assuming yours is different from everyone else's)
-> 2025 (or COMPANY 2025)
All coverage documents, ID cards, medication guides, etc.
EOBs (Estimate of Benefits) not only detail timelines and specific charges vs. what you 'may owe,' but that 'may owe' can be matched up with receipts to see if there you might have lost an eligible receipt.
Ask a CPA what the current minimum medical spending is for your tax bracket this year. Last year, if I spent more than $7500 out of pocket, it might have been better to itemize my taxes. If I spent less, I could still do simplified taxes.
Since states all have different tax rules, and some have state Medicaid/Medicare expansion, the limits might be different where you live.
4. FINALLY! WHAT DO YOU DELETE OR DISCARD?
Any receipt for $0 (like, "insurance covered this, your balance = $0.) It will be on an EOB. Don't keep double papers.
Anything older than 7 years from last tax year. So in 2025, last tax year filed was 2024. I will keep 2025, 24, 23, 22, 21, 20, 19, and for now, 18. No, I do not think the government will ever audit me for any reason. Yes, I will still keep them.
Any insurance plan info from before last year. This is because medical offices sometimes have months to submit a bill and can appeal that bill for more months. So I will keep 2025 and 2024 insurance documents but not 2023.
All medical info ever is something I KEEP- within reason. I have never needed most of it. On the rare occasion that I've needed to say, "there's evidence of this problem when I was a teenager," I have it. All the extra stuff like hospital privacy policies, financial repayment ER crap I had from 10 years ago, all that can GO.
Any info on apartment agreements I haven't lived at in two years can also go, unless there was a legal dispute of some kind. This relates to medical stuff because I have ESAs, which are protected as medical equipment, and one apartment illegally evicted me for "pets" (which were registered *as ESAs* with them.) Some places will also try to withhold security deposits after installing legally required things like grab bars in showers, claiming "damages" from alteration or removal.
Together, these things can help you throw away piles of physical papers. Less to store, less to keep track of. You can also get a better grip on wading through your digital files. Just like too many papers, too many files to go through can drown you.
Think about enlisting a trusted friend or partner to do some of this legwork for you. They don't need to read whole documents. Just the bare minimum info for titles.
You don't have to do all these components. You can pick and choose, and do each to the best of your ability or desire. There's no wrong way. You're working on it.
a continuation of thoughts on medical binders and documentation, as a chronically ill person
What am I doing with dozens of papers? How do I navigate all these doctors' visits?
I don't. I don't have energy for this as much as I'd like to. Chronically ill people have 10x the shit to sort just to barely manage our health, JUST in paperwork, and 1/10th the energy and ability.
Okay, so... wtf.
You need to accept that doing this, as a chronically ill person, WILL be a 20 hour a week part-time job. If you were ABLE to work 20 hours a week, you probably wouldn't have to think about this to begin with!
Therefore, YOU will probably not do all the organising perfectly, either. It is not a flaw. It is a feature.
You are not going to "feel like" keeping up. You will probably go 4 months between the last update and current one and you just won't Feel Like It. That's fine! You are never going to "feel like" it, the way I am never going to feel a yearning desire to stand up and wash dishes while my hands feel like they're filled with broken glass and my heart is thudding from having to stand. "Feeling like it" isn't a requirement. Don't think about it like that.
Just DO it. 20-30 mins, ONE time, every 3 months or so. IF you can continue to do more, great! If not, don't. Any more is more. Good enough.
You are not a failure because you aren't doing "better."
Not being able to do brain-taxing tasks like this does NOT mean that secretly somewhere in your inner child or subconscious or whatever that you actually hate yourself. I've heard variations of that and it's a bunch of fluffy new age ableist bullshit. You are not a participant in self-harm of some kind if you aren't doing "everything" you can to keep yourself in "best condition possible." (Why don't I just work harder? pfffft k. YOU do this shit every day. For the rest of your life. Second of all, fuck you, why do I have to do a million things to live up to a standard I will never reach, while some other asshole is perfectly allowed to have a slice of non-optimized pizza, or doesn't exercise for three days and that's fine. absolutely not. you don't owe anyone your existence.)
Or as I told a physical therapist last week, if I did the routines necessary to keep the body *in stasis,* not getting ANY better, just slowing down how much worse it's getting, I would use possibly ALL of my energy EVERY. SINGLE. DAY. It would take HOURS per DAY *just* on exercise. And THEN there's a complicated, involved routine for 'perfect use' of medications. THEN I would need energy and brain power to do all cooking perfectly every time because of all the health issues that snowball into each other, none of which I can do on a normal day, anyways. Would I have a life after all that? No. So do I do alllll the things "needed" to improve my physical abilities? hell fucking no, and anyone Disappointed in me over that can take a long walk off a short pier into a trash fire.
That's how being chronically ill IS sometimes.
We often "know" this but... even after many years... I can itemize the 40-something odd problems caused by 2-3 main disorders... and Yet. I will get angry often because This One Small Thing is now hard. Lots of us are like that. It's part of the anger of grief. We grieve the parts of us that will never function again, bargain to try to get it back. Every day, so close and so far. Lots of chronically ill people are also frustrated and sad like I am. Yeah, that's how grief works. (by the way, therapy for 'depression' rarely helps us, but ongoing grief therapy can, with someone who understands decline and illness.)
So what do any of us DO?
WRITE DOWN a general plan. If you don't write it down, you likely won't remember later. Write in DETAIL, but not *overwhelming* detail. I might have two 'versions' of the same 'instructions' to myself, one that is a summary and the other which explains what I'm doing and why.
Schedule yourself a loose plan. Block 30 minutes every X amount of time to do this "admin" stuff. I have a whole list of different "admin" tasks to do every week. For medical stuff, I tell myself I'll do it every 2 months. If I schedule it every month and I miss 2 or 3, I'll feel really compelled to do it by the 4th, so I'll finally DO something.
Make the work easy on yourself. If you have physical papers related to medical, even if it's just receipts, put them all in one place. I prefer a document hanger on the door, so I actually SEE it.
Know that you will not Feel like sorting and organising. There's no motivation because there's no immediate reward. It isn't new or exciting. You will need to do some things to make it rewarding, like pair doing this with a specific food you like that you only eat when doing this thing. Make a playlist for doing admin tasks. You completed the goal? Do an immediate happy thing.
Know that it's also OK to not "get it all done." You will do more later.
Do not let yourself get depressed because "awww, it'll NEVER be done. There's ALWAYS more to do later." DO NOT LET YOUR BRAIN BE A DICK.
One way around this? Frame it differently: you DID "get it all done," because "it" is JUST all bloodwork done January 2023 - June 2023. Checkmark. July - Dec 2023 is a DIFFERENT task!
I try to do multiple things at once because I am super ADHD about this crap and I will have to figure out steps and go through all data a second time later if I don't do all tasks at the same time.
ADHD causes the brain to make a LOT of work over a SMALL task. This is a BIG task. Which means it's so much worse.
I will not want to do this whole process "twice." That means I don't wanna scan a bunch of stuff and then go back again and open up everything to name it right and then do that AGAIN to put it in excel. Stop making extra fucking work. Do it all ONE TIME.
The 5 Tasks:
- Download or scan document to computer.
- Rename and file each thing IMMEDIATELY. No, I will NOT go back and individually open files to figure out what it is. The goal is to touch each piece of paper ONE TIME.
- Enter info from documents into the excel file in pt. 2. No, I will NOT go back and open each file individually to see what data is there.
- Toss if before 2020 (for me) or file. File is in "old medical" OR in medical binder. ADHD is prone to decision paralysis, meaning I will lose 10 minutes at a time on ONE piece of paper, unable to decide if I'll need it later. Even though I have never needed it before. If you are like that, you must have a hard and fast rule to THROW THINGS AWAY. For me, it's almost everything before 2020. If I ever need it again, it's scanned and sorted! I can just print it back out!
- If I have a thought, write it down immediately... or else, it will be right out of my head. I write these on a sticky notepad, the 1/4 size with lines.
That's that whole series of things. Seems simple on the surface. Simple is not always easy.
5 tasks list -> sort into 3 piles: receipts, old medical, or binder -> see binder tutorial.
That's it.
"Sort into 3 Piles" can be 3 trays for paper that are LABELLED, so you know which is which. You don't need to put them away yet if you're already tired. If you used all your available energy on the Big Project, that's fine. Putting it away is a SEPARATE TASK and those 3 trays have already helped you for later.
"Binder Tutorial" tbh can literally just be "shove all items into medical binder to sort at a later date. Sorting is another separate task.
Then (usually the night or day before an appointment where I need it) I'll sort the binder itself. That last-minute adrenaline is key with ADHD. Just gotta manage workload so I don't have too many tasks with no time left. That's why "sort the binder" isn't on the 5 Tasks list.
You are doing as well as you can. You are actively learning ways to change your life. You are trying out new things, new approaches, new systems. You are already doing enough. With a healthcare system that kinda uniquely sucks for us and bodies that are failing, you are already surviving 100% of the bad days. All the rest of this is a bonus. I just hope that this system, once in place, works out for you to make future days easier.
I've been doing this a long time now. Almost nine years.
I've had multiple hospitalizations for serious issues like that one time, when I was grocery shopping and my heart just stopped?? Or that time when I was driving home from work and I blacked out for 30+ blocks and didn't understand how a phone worked and couldn't get my left arm to do things right. I think I was 22. TIA symptoms.
Some of those stopped when I started saying "fuck this" and learned how to fix some of those issues, or at least mitigate them. There's no fixing a heart defect or dysautonomia. It takes a lot of time, effort, ability, and a foundation in separating good sources from emotionally-charged bullshit- which I have to say is RAMPANT on youtube and tiktok, even from doctors you can look up. Some internet-famous doctors have given Opinions on stuff way outside their specialty and were flat-out wrong, even harmful to people watching. But it gets clicks and views! And you get rewarded for just saying stuff and having that authority bias! So why wouldn't you.
Ultimately, YOU are likely not able to do the sheer amount of studying in academia I've had to do. It isn't an ego thing. It's just that most people literally do not have the combination of time, resources, foundational formal research skills carried over from other academia, etc. that I do. That is not your fault and it does not make you a lesser person, or someone who isn't Doing Enough to manage their (or someone else's) conditions.
Plus, I expect that many people reading this live in America, and have to deal with the American health system. While this Binder model can be useful anywhere, there are unique... challenges... in America.
Part 3 is my perspective on why medical binders are necessary, one reason why so many of us have mediocre doctors, and how/why we can help ourselves.
The System Sucks for Us ALL.
Not covering ANYTHING about making or getting appointments, paying for it, insurance, none of that here. Simply the act of the appointment itself.
For one of my GPs (general practitioners) insurance generally gives 15mins for an appointment. Roughly 8 of those minutes are expected to focus on the patient. 7 is for documentation. Specialists get a little longer, technically, but in reality if you don't actually need it, that time IS necessary for someone who does. This is why so many doctors bill for longer appointments. It isn't "defrauding insurance." It's "demanding enough time."
Let's imagine a GP, Monday - Friday, 8 hours plus 1 hour for lunch (a 9 hour day.) Let's give 4 weeks of vacation + sick days out of 52 weeks of the year, 48 weeks.
1 hour w/ 15min appointments (patients) = 4 per hour.
4 x 8 hours = 32 appointments per day IF everyone shows up. So let's say 30 appointments a day to be generous.
30 appointments a day x 5 days a week = 600 patients a week.
600 patients x 48 weeks = 28,800 patients per year.
These may not even be patients they are familiar with!
Most people see a GP twice a year, for an annual, and mid-year bloodwork. Some go 3-4x, for antibiotics or some small issue. So 28,800 patients who MIGHT go twice, but who won't always be the same ones as last year. AND every single one has a totally different medical history and social history that contributes to that medical history!
Yeah, it'll be fiiiiiinnnneeee. Why wouldn't it be.
Most doctors ARE trying. They are set up for failure. There is no way for any of them to 'win' in this system. If they perform what's best for patients, they lose- and when doctors' offices are becoming corporatised, they can lose their jobs. If they perform what allows them to keep their jobs, the patients lose.
No one wins.
This is one reason so many brilliant doctors suck, actually.
They start out as great students, I'm sure. Getting any kind of medical license is... actually pretty fucking grueling. There is a real problem with suicide because of how intense many of these programs are. Your doctor survived that and then survived rounds in hospitals, where sometimes shifts are legally allowed to be 20-24 hours long. If you are considered too tired to drive, which is more dangerous than drunk driving, after about 18 hours... how are you allowed to do the intense calculations for medicine for dozens of patients?
right.
These people are often broken by the time they get to a practice. Normal shit is almost a relief. Arthritis? Straightforward. Only so many types, only so many treatments, easy to diagnose, the hardest part is working with insurance. Chicken pox, UTIs, even GERD? Relatively straightforwards much of the time. Resolutions cascade like a flowchart. It's stressful, intensely stressful. Read that top part again on how they can't serve two masters, patient and insurance. But it's manageable.
lol and then there's US.
My excel records are long and look intimidating and/or like someone who has Munchausen Syndrome.
That's actually what I have on some of my early records, especially from hospitals in the early 2000s-2010s. That TIA I mentioned? One of the hospital nurses noted that I must be fine because I wouldn't sit down in the waiting room, despite claiming neuro symptoms. She neglected to write down the part where sometimes if I sit down, especially in those hard chairs, my leg goes numb and I fall if I try to get up... causing more injuries. I told her to get me a wheelchair and I would. She refused and said I don't actually have that problem. How the fuck does SHE know?
BUT doctors usually have good reason to believe other experts. I mean, look at people who claim they have all kinds of issues with not even a little bit of evidence. Not even symptoms that match up. People who really do claim that regular headaches can ONLY be mold poisoning and that a flu shot causes cancer. And my records now say I'm injuring *myself.* A person who has Munchausen's would deny having Munchausen's. That's a feature of the disorder. I get it.
Worse, chronic pain from severe illnesses is demonized, especially in my State (Floriduh.) It often isn't even a matter of the DOCTOR believing you. Most of the time, getting access to my meds is a problem with how our state regulations work. Doctors are scared AF to prescribe even very justified, necessary ones, and pharmacies "limit" addicts by simply NOT EVEN HAVING THE MEDS when prescribed!
Doctors who can deal with chronic illnesses will be of two minds, both "could be" and "what if it isn't" until one version is solid for them.
It's infuriating. It delays treatment in ways that injure us, sometimes permanently.
but aren't some doctors just really fucking bad at their jobs?
uh, yeah. find me a chronically ill person who hasn't had a genuinely shitty doctor. like, not something that could be rectified with patience and education. we're talking about a bigoted fuckwit who hates Certain Patients but you can't lodge a formal complaint because ______ (state makes it impossible, it's the only doc for your thing in three counties, etc.)
of COURSE they exist.
i've had some really fucking bad ones. some who probably just gave up on anything that isn't easy to solve, and some who are outright malicious. like the bitch who told everyone that i'm secretly an alcoholic and that's why i shouldn't get treated for ehlers-danlos pain. that sounds nuts but i can actually prove it *with her own records.*
Okay, but about those excel records...
That's why these records have so many details. They need dates, specific doctors listed for things so they can call that office and say "Hey, you have patient X? Can you send your copy of those files over?" They need to be able to verify whatever is happening.
Anyone can say they had staph or something weird and scary. Does that mean YOU are lying? NO! Do sometimes people lie or misunderstand something or maybe aggrandize a little bit because they DO have a problem that isn't getting attention? ... yesss. Having someone to verify that data is key: you need to cite your "sources," the doctors you saw, the dates, contact info. The less you make an office work, the better. All of that is in those records!
The other extreme is burying someone in information. Piles and piles of individual records from a dozen specialists shoved onto a desk. The doctors don't have time or ability to go through all of those, plus if you actually READ them YOURSELF, you'll find they often aren't even accurate!
One office insisted that I don't have... smoke detectors??? And they blame my 'complaints about symptoms' on the patient believing they have nutrient deficiencies. That is not what happened. I was there for a followup, specifically for Celiac disease, and a hemocrit level of 4. That's dangerous. To put it mildly.
The excel system avoids ALL of this. You can condense piles of records, which are often wrong on serious matters anyways, by summarizing. I've now got 6 sheets of paper that I can bring to every visit. If I need something specific, like recent bloodwork results, those are in the first divider section mentioned in Part 1. Otherwise, just the excel info is needed.
You have the power to help yourself by helping them.
Are you anxious about your health? Is that why you're doing this? No. Not more so than anyone else with a serious disorder. But if you look, one of the features of both the disorders and the meds involve memory issues and recall problems. These papers will do that for me. No guesswork.
You don't need to triplicate such and such test. It was done four weeks ago, here's the paperwork.
Medicine is supposed to be COLLABORATIVE. You are supposed to work together.
If you want a situation where you say, "this is what's happening, I'm exhausted, please just tell me what to try." that's fine! Just say that to your doctor!
If you want a situation where you say, "hey, a lot of what works on normal people will fail on me. if you think that's frustrating, it is for me, too. but i'm willing to work on it if you are. let me know what you're able to do." that's fine, too. Just say that.
And if you're ever in my position with getting a new GP (required by insurance,) it's okay to hand them these summaries and say "Look, I'm here because insurance requires it. I don't think you're bad at your job. Take a look at these, though. Almost all of my doctors are specialists, and even they can't do much for this illness. Aside from bloodwork or basic stuff, I don't think there's a lot you can do. I don't want to take appointment slots from people you CAN help."
and most of the time... that's been okay. sometimes it's even a relief that they won't be expected to perform miracles or get something really complex resolved.
