Actually

[eldabe]

While I'm musing on platforms, here's a hangup.

People on tumblr will say things like "don't reblog" (on specific posts) and "do not interact" (generally on their little bio bit on their tumblr main page).

My dudes. My fellow fandom internet people. My peeps.

If you want people to not reblog things...you should not post them...on a platform where reblogging is at least half of the functioning of the platform.

Like. I get it. I get it when people are like, oh, someone tries to violate my boundaries by reblogging, so I am going to block them. Legit! Go for it!

But it's tumblr. Rebloggin' is what tumblr does. You are demanding manipulation of the platform that the platform doesn't really, IDK, accommodate? (I think pillowfort actually does allow locking down of posts, but pollowfort has, uh, other problems.)

This is to say nothing of the whole "only reblog if you are a specific race/religion/sexuality" which. Whoo boy. I have a lot of thoughts about how culture has shifted to the idea that people don't lie on the internet but. But. Oh no. This is a bad trend.

And.

Oh boy.

Do not interacts.

Like, I saw some point out online that it's just like "here are a list of things that bother me, to make it easier for internet trolls to harass and traumatize me" which! Good point! Maybe don't make that information easy to access!

But back to trying to shove round platforms in square holes...most people are never going to see the little tumblr bio because most people are going to see tumblr posts in reblog, stripped of all context. Unless your USERNAME is "RacistsDNI" or something, there's just no way to keep that preference attached to the reblog cycle.

I mean, even facebook has more control over their stuff (you can lock down an individual facebook post to make it impossible to share, whereas I don't see anyone using the tumblr "password lock" post feature, if it even still exists.)

I don't blame people for trying to establish boundaries, they are absolutely free to do so. But I can't lie, I find it exasperating. It's liking walking into an ice cream store and declaring I AM LACTOSE INTOLERANT NO ONE OFFER ME DAIRY PRODUCTS. You are absolutely allowed to do that! Your choices deserve to be respected! But your choice of venue is going to hinder your message a little.

(Bad analogy is bad, but I should be asleep XD)

Comments

[eldabe]

Well NOW I'm going to start playing with Dreamwidth on mobile firefox! ♥

Also COSIGNED ON THE KEYBOARDS. I haaaate using my phone to type long things. I nearly forced nearly all my friends to switch to whatsapp so I could use the desktop app to text them all, because I hate typing on my phone. It's miserable.

I mean, I'm impressed you even have medical notes on your phone, I keep trying and failing to keep track of my medical stuff digitally (a notebook won't work - I keep losing them) and utterly failing to keep track of any of my medical data basically.

Please let us have keyboards again!!

[lannamichaels]

+1

My medical stuff lives in a giant Excel file and also word documents in various levels of consolidation. I am usually good at copying from the emails and putting into Word and fleshing out details, but there's also notes from the optometrist from 2014 in an unread email to myself that I really do need to get around to putting into that Word document... But I did finally get around to putting in ALL the physical therapy exercises I've been prescribed since 2010 and discovered I have been told to do the same exercise multiple times, so maybe I should do that one ;)

[eldabe]

Hahahaha, maybe!

Although, from my perspective, that sounds pretty organized!! At least you know you have notes in that email. I go to new doctors like "hello, here is what I can remember about my health from stuff in my head." (0/10, do not recommend)

[lannamichaels]

Would you be interested if I sketched out how I have stuff organized? All of it is reproducible in google sheets, I just don't trust myself to edit that stuff on my phone.

[eldabe]

I mean, I cannot lie, my interest is super piqued. I've been trying to get this stuff under control for years and I have...not. If you are ok sharing, I would love to hear how you do it!

[lannamichaels]

Okay so, the first tab is Useful Facts for anything I would need to remember and have no other place for; right now this is just my blood type (which I got typed twice because I couldn't fricking remember what it was). I have a tab for glasses, which has my prescriptions for every year since I started tracking and a description of the glasses that have that prescription (I have reused frames and also the ones I got last year are identical to the ones from 2019, so at some point I need to somehow mark that on the frames themselves, possibly with nail polish). I have a vague foods list when I was trying to figure out what foods I can and can't eat; I haven't touched that in a while tbf. I have data extracts from my FSA account from work, which I do maybe once a year or around there, just, what my claims were, etc. Possibly my most-used tab that is never updated is the Health Insurance Numbers one, which I reference every time I'm on the phone with someone and they want to know my insurance number, and I've also got my medical record numbers from a couple different hospital systems in there in case I'm asked for that.

Then there's the financial ones. Bills: account number, statement and due dates, amount owed, who is billing me, have I paid it, what even was this for. Alas, this is not a 1:1 tracking with the EOB sheets (one for medical, one for dental, and vision for some reason has decided they don't give me EOBs), because some bills can encompass multiple EOBs, so I try to focus on the service date columns, but it can be a headache at times to get a bill and resolve which EOB it's referring to so I can mark it off. The EOB sheets have two main tables and it's because I need to split up the EOBs: the format of my EOBs has some information that is related to the EOB as a whole (such as the relevant dates, the provider, etc), BUT some info that is for each charge. So there's a main table with EOB-specific info, and a table below it with each charge from the EOB, and the EOB number is in both tables as a key between them. This I have to do manually. I do as much exports as I can across all my tracking spreadsheets (as a contrast, my financial spreadsheet has a million tabs and only one of those is manually tracked), but my EOBs are in PDFs and I have to copy/paste everything myself out of them; worse, for the dental ones, there didn't used to be a website for them (there is now) and I had to scan the EOBs into PDFs and then put it into the spreadsheet. But the "have I paid this or not" column is great for tracking and also lets me know that very rarely... they forgot to bill me for things.

Then the stuff that is less medical and more medical-adjacent, such as, back in the before times, if I went to the gym, what I did at the gym (regular workout, a specific class, etc), different sheets for tracking various symptoms/taking specific meds and things related to that (one of the sheets is me tracking anxiety attacks, for example. These aren't comprehensive, it's more just recording the ones that I record).

I've got sheets for tracking vital stats, from home and one that's the extract from the patient portal system that has from appointments. I don't know how accurate that info is, though, since sometimes they ask me basic vital info during triage and I don't know if that gets into the record as if it was measured at the time, so I take certain measurements with a grain of salt (for instance, I know any pulse value is measured, but most height measurements wouldn't have been measured). The "blood pressure taken at home" one has a calculated column to convert the numbers into the AHA's blood pressure levels alert chart, but I also take that with a grain of salt, since I used to have great BP and now I don't, and a triage nurse told me that at some point in the last few years, they adjusted the range? So I may have stayed the same but the goalposts got moved around me. Either way, I know my pulse is always going to be considered high and that's my normal, and BP's just a confusion. I don't take home vitals that much, but I do have enough in there for baseline, to compare to non-baseline as needed. My thermometer measures in celsius, which I could probably switch if I tried really really hard, but it's easier to me to just have a calculated column in excel that converts from C to F for that.

I've got a food log in there that I started before a nutritionist visit, of which the visit turned out to be so so so useless, but having the log turned out to be useful, so I've kept it going for years, because now I can be like "huh, have I ever had [product] before? did I like it?" and I can just check the log, SO USEFUL. Plus I know how many servings I get out of certain things that are tracked specifically, so I can also filter the log, count up how many have been eaten, and know how many are left lurking somewhere in the freezer. I've also got a sheet that, if I don't eat two meals a day (I have problems either feeling hungry, noticing I'm feeling hungry, or both), I mark myself off.

Back to the medical-specific stuff, I have a sheet with my doctors appointments, both past and future, with the date of the appointment, the date scheduled, the doctor, what kind of medical, where it is, and comments. I have another tab with the list of doctors, but I haven't really kept up that one up; it was intended to have contact info but it just got too annoying and I never updated it, so I use the appointments sheet to store things like phone numbers.

There's the medications, which is past and current, with columns for brand name and generic and dose amount, prescriber, dates, and comments. I'm still working out how to track meds that I take, stop taking, and then start taking again later, in terms of dates; I think last time I had that, I just added it as a new row. This is probably the most helpful, because I can filter for "current" and boom, I've got my list of meds to bring to an appointment. Because there's one med that I NEVER REMEMBER to list when I have to give a list so I always have to be like "oh right, and also that one" at the end.

Procedure dates sheet is for the loosest possible definition of "procedure"; this is pretty much just being defined as "anything that involved anesthesia". So that's what it was, the date, where it happened (the ones before 2007ish have question marks tbh), and the ordering physician, if relevant.

Imaging is separate, this is ultrasounds/MRIs/mammograms/x-rays, and it used to be in procedures but eventually that definition of "procedure" got too broad even for me. These are just tracking that they happened; any known results are in Lab Results. (I don't have known results for dental xrays).

Diagnoses/illnesses/chronic conditions is very rarely updated, but in theory it has my diagnoses, diagnosing physician, date of diagnosis, approx day symptoms started (mostly blank tbh), and comments. This is mostly just for reference for medical terminology, like, "okay what is the actual term for the part where my knee hurts when you push on the front of it".

Vaccinations! the funnest sheet of all these days. It's got the vaccine, the date, the location, and any comments. This only goes back to when I started tracking it, so I don't have childhood vaccinations on there.

PT exercises: as above-mentioned, a description of the exercise in my wording, the body part targeted, the related diagnosis, the category of the exercise (is is massage? a stretch? involve a therapy band?), comments, the date I was given it, who gave it to me, the position I have to be in (so if I want to standing exercises only, I can filter for that), and the actual name of the exercise as it was given to me (for my shame in "how many physical therapists does it take to tell me to do clamshells before I stop doing clamshells because I feel better now")

Periods does what it says on the tin, with amount of time between them, and then some absurd info, such as me using formulas to do counts on day of week, average/median/mode/min/max time betweens, and just other Excel-based amusements. I have this info going back to 2003, because that's the one medical tracking I always had to do, because "what's the first day of your last period" is an answer they always want from you, and so I kept my mini-calendars around and then when I started using a period tracking website, I loaded all that info into it, and when I stopped using that website, I exported all the data into Excel. So I have 18 years of that info, wow.

Lab Results are kind of a mess, because those are straight up exports from patient portals, but if they change their structure too much, I just make a new table instead of trying to merge the tables together. I do indicate what kind of test it was, if it was fasting/non-fasting, and any comments. But this sheet is a mess.

Family History is a bunch of relatives, their dates, their current age or age at death, their relationship to me (sometimes relatives ask me for this info and I send it to them; I hope they update that bit ;) ), side of the family it's on, specific medical problem, and cause of death if known. This is one of the relics from The Cancer Time, but it's a good thing to have, albeit very awkward to put together and e-mail my aunts and first cousins saying "so hey, any diseases that might be relevant for me having another round of genetic testing?"

Speaking of genetic testing, I also have those results in here, but at the end. I added that... relatively recently? in the last couple years, I think. I was reorganizing stuff, and realized that was in various places and not in here.

I've got a sheet for hospital/ER visits, but that shows the deficit of me tracking this myself; it's only got the one since I started tracking. I should dig up That Time I Got Kidnapped By A Hospital. This might also be a place for me to track urgent care visits, hmm.

I've got some post-surgical tracking where I had to track some things and then never had to look at it again, and also my discharge instructions; that's just in here as a place to keep them. And some random tracking that a doc asked me to do, such as a week of sleep tracking.

And there's various pivot tables and all that in there, but the long story short is that most of this is reference. While I update it on average twice a day, that's just the food log. Otherwise, it only gets updated when there's a need for it, such as I schedule a new doctors appointment, or get a new EOB, or pay a bill.

[eldabe]

This is breath taking-ly thorough, you know. And SO impressive. Like I found myself taking notes as I was reading it because there are things you track that I've never even thought of tracking. Like, oh, tracking medical info from relatives? Genius!!!

Basically, THANK YOU SO MUCH FOR THIS. I don't, um, currently have the spoons to start on my own, but this is such an amazing, amazing guide of how to track, and what to track, and I am going to save it and try to get to at least thinking about this asap.

(Also; pivot tables? Top tier impressive)

[lannamichaels]

I don't, um, currently have the spoons to start on my own, but this is such an amazing, amazing guide of how to track, and what to track, and I am going to save it and try to get to at least thinking about this asap.

This ABSOLUTELY grew over time and just added sheets organically as I needed them. Like, I probably just started with putting in all appointments as I scheduled them. And then probably the meds list. And then just adding on. If your medical providers (past or present) have patient portals, there's probably info on there that you can copy/paste into excel and just use their formats for things.

Like, the overall stuff is just "there's an event, I write down what it was and the date". Narrative lives in Word documents for each appointment or, if it's an ongoing thing, a giant Word document for that thing. But the Excel is events-focused.

The pivot tables are because, once I learned how to do them (in circa 2011? I think?), they changed my entire life. We had to redo all our charts every time we got late data! It was horrible! WAIT WHAT DO YOU MEAN THERE'S A WAY THAT I CAN JUST HIT REFRESH AND IT UPDATES ITSELF.