Category: definitions & descriptions

Seeking Diagnosis if you don’t fit the Standard Medical Model

Isy / / basics, care team, communication tools, definitions & descriptions, documentation, radical presence/radical acceptance

Today’s post is a copy/paste from an answer I wrote in my socials. This is real life, not polemic.

“I’m a woman trying to get a diagnosis for my pain. I can’t understand the doctors, or they don’t understand me. Do I need to take someone in with me? I need the dr to take me seriously.”

Hoo boy, is this in my wheelhouse. Longtime (>25 yrs) pain patient, retired RN, ongoing patient advocate & educator.

You’re right: the pain of women (cis & trans) and people of color is dismissed, misunderstood, and under-treated horrifically. Know that this is unconscious reflex. It can’t be corrected by us, but it usually can be hacked.

How?

By presenting it as non-personally as possible. In other words, use:

A. Data & images to describe your pain & its effects,

B. Journalistic documentation for your experience with it, and

C. Others’ voices to support your words as you communicate it.

First, though, two key points:

Pro tip 1: Keep in mind “an averagely bad day”. We cannot plan for anything better.

When we’re describing how our pain affects us, we have to stick, not to our best or worst day (because they’re irrelevant; they’re exceptions) nor to an average day (because that’s out of reach without effective diagnosis, treatment, support, accommodation, nourishment, and rest), but to an averagely bad day.

This is our reality, and it’s what they need to know in order to plan appropriately and understand our needs.

If you describe any worse, you’re assumed to be faking it. The lack of conviction will show.

Any better, you’re actually faking it, but in the other direction.

“Averagely bad day” is the functional standard.

Pro tip 2: Recuperation and recovery is not calculated into pain description, unless you put it there. For instance, an activity that wipes you out for 3 days is different from an activity that knocks you back for a couple of hours, even if the reported level of pain is similar. Eff that tish!!

Calculate & document recuperation time.

For each thing that makes it worse, or each flare, document how long it takes to get back to your baseline. This is key to getting remission or even disease recovery.

A. Pictures & numbers

There are not enough words for pain in the English language. Also, as we know, they’re somehow just noise when coming from a woman, a “weirdo” (fill in any pejorative term), or a person of color. It’s wild, but there it is. We have to work around that.

Most of my tools are about getting their attention off of me and onto the pure information about my condition.

Which is interesting to them.

I’m not, and I handle things accordingly.

There are many ways to document the location, character, and intensity of your pain:

– Take pictures and mark them up in your photo editor.

– Fill out those “standard body” outlines.

– Draw your own outline of body or body parts and use that.

– Whatever works for you — just visualize it.

Make them look at the image, not you. Then they’re processing info, rather than being triggered by “woman reporting pain — must pretend it isn’t happening”.

We were all brought into the world by a way that typically causes a heck of a lot of pain to those giving birth, and sometimes I wonder if that primal event is what the denial relates to.

Functionality is the bottom line for any chronic condition.

The more you can put numbers to your levels of capacity at different times, the better. “Can carry 2 grocery bags 30 ft to the door today after meds, but yesterday I could only carry 1 without meds.” That’s an incredibly boring task, but it’s also an incredibly important indicator of function. It’s pure gold for the doctor’s notes.

I’ve got posts about doctor visit updates and timelines that demonstrate these tools in real life. For more info, go to the search bar or word cloud and search “documentation”. The site is a bit chaotic, but it’s all there.

B. Journalistic notes

Journalism answers “who, what, when, where, how, why”.

Who:

You’re the “who” who’s in pain.

Who sees, or is impacted by the effects of, your pain? Kids, colleagues, etc.

Who gave you a diagnosis, if any? Mention doctors by name and specialty.

What:

What hurts?

What makes it worse?

What makes it better, and is it significant or not?

What have you tried but had no benefit?

What’s affected? (Work, walking/standing, using the bathroom, carrying things like equipment or groceries, sleep, food prep & eating are the usual biggies.)

When:

When & where did it start?

When does it get worse? Better?

Does it have a diurnal pattern, meaning a consistent rise or fall through the day & night?

Where:

– Where, and how, does it hurt? Pictures are your friend. See A.

– Where do you go that makes it worse or better? Parks, forests, or print shops & other VOC sources can have an impact.

How:

– Describe the character of the pain: piercing, squeezing, burning, tingling, nauseating, etc etc.

– How does it limit you? Be specific. It helps to know that a gallon of water weighs 8 pounds, a bag of groceries about 10-12, a can of beans about a pound.

Whether you can lift without symptoms, how far you can carry, and whether you can manage stairs with those loads, are all good data!

How much you can do *safely and without needing recovery* is key.

– How long does it take to get back to your baseline after something happens? Calculate & document recuperation time. More on this later.

Why:

– If you have any thoughts about why it happened, mention them.

– If you have health-related gene scans or DNA analysis, it can strengthen the case for paying attention to you.

DNA rarely provides diagnoses, but clarifies ways you’re susceptible to types of illnesses, including pain diseases.

– If you have found any scientific articles, bring copies or send links.

C. Others’ voices

Others’ voices (especially deep voices from tall men) are more credible, somehow, and that’s messed up. Our lone voices should be heard! We are the experts in our own experience! But, well, here we are.

– If you don’t have a male friend or relation who is willing to be your “stunt man” and sit there exuding man-itude and occasionally repeating what you say, then there are other hacks.

A 3rd person in the room is key.

– A woman is excellent! She can sit there and quietly back you up, which is the baseline. She can ask if you feel like your questions were fully answered. She can ask if you understood what the doc just said, if it sounded like blah blah blah. She can ask her own questions, if you’re both OK with that. It’s your appointment after all; you can bring your own help.

You might (!!) see the doctor jump when she speaks, if they’ve forgotten she’s in the room. (It’s good for them.)

Pro tip: You’re a patient. Pride is irrelevant. It’s OK to seem goofy (though neat & well dressed,  if possible), as long as your needs are met and your care is appropriate and effective.

– It’s the law that you’re allowed to have a chaperone (yes, they use that word!) from the office in the appointment with you. Insist sweetly that you know it’s your right to have a chaperone with you, you want one, and you’re here a little early (be 15 min early) to allow them to find one for you.

You don’t owe any further explanation, though you can assure them the dr is fine, you want a chaperone anyway. (They’ll just have to work short-staffed until you’re done.)

Corner case: There’s an outside chance they’ll send in a security guard, which is inappropriate (they don’t have medical training and aren’t as trained in HIPAA) but it can work in your favor because, hey, usually someone tall & deeper-voiced. Greet them sweetly and thank them for being your chaperone — they need to know you’re to be protected, in their mental framework.

– You can ask about recording the visit, but be prepared for shock & horror. Being recorded is poison in some facilities because of legalities and liability concerns — and the way words can get twisted in court. If your doctor is fine with it, great! You can review it with your notebook and Merck Manual Consumer Edition.

There you have it.

Today I Learned.. about how cashier’s checks work

Isy / / critical thinking, definitions & descriptions, imp-possible, money, perspective, Today I Learned..

If you’re chronically ill to the point of being disabled, you’re probably the sort of person that things happen to. This is something that insurance companies used to have data for, so nobody can tell me this category doesn’t exist. Besides, I think I am one!

Long story short…

Cashier’s checks can disappear into the void, but — if you know a little terminology — it’s possible to get them out again.

Note: this is based on the US system. The concepts broadly apply, but tend to be implemented differently elsewhere.

Lingo and key points are in bold.

When you get a cashier’s check, the money is taken out of your account and put into the bank’s GL, or General Ledger.

The GL is a kind of “sandbox” that they can use to move money through in a way that protects the cashflow, regardless of what else happens in your account. It’s strictly temporary and has to be zero’d out at the end of each day.

Whatever else you do, check 2 things on that cashier’s check:

  1. Who it’s made out to (get them to read it to you if necessary).
  2. How much it’s for.

If either is wrong, push it back across the counter and make them redo it immediately.

The cashier’s check is drawn on the bank’s own account. This is why the account number on the check is not one of yours. It’s also why they’re considered more usable than personal checks: banks are guaranteed to have that money in hand.

If you take that check to another bank to deposit it, hopefully it’ll be credited directly to your account.

If not, here are some clues to follow.

I’ve spoken to 8 or 10 bankers in the past 2 weeks, 4 of them managers/assistant managers. (I don’t know exactly how many people were in a couple of those rooms.) Only one of them could explain this to me. So, might want to take notes or print this out.

If a cashier’s check is negotiated (in this case, that means “marked up and legally received”) by a bank, and subsequently denied for any reason, it goes into a magical 3rd space that few people even know exists. This is where things get interesting.

If anyone tells you — as people have told me — that a problematic cashier’s check simply vanishes and you lose that money, they’re wrong. Don’t put up with that.

1. If the check was negotiated by the receiving (2nd) bank before being denied (this is rare, and requires at least three people to be asleep at the time!), then call the issuing (1st) bank and ask if it shows up in their system as having been cleared.

But wait! There’s more.

2. If it has been cleared, then next, the bankers need to look for what’s called a Fed adjustment. Naturally, the Feds keep a hand on the tiller of bank transactions. When a balance sheet is not right, they make a Fed adjustment — which does not show up in the usual account information, as seen by the front-line staff! — and gets parked in the 1st bank’s own accounts somewhere else.

PRO TIP: Try to get a trace number, or else (like someone sitting in my seat right now), you might wind up waiting still more days to track that money down definitively.

Information about a Fed adjustment is not available to the usual banking staff. Access to that info is available only to specialists, and it’s often contracted to a specialist 3rd party.

The bank’s Accounting department might have access if they know they’re looking for a Fed adjustment. The Operations department (if they have one) will have access, because they have to handle policies and procedures and stay legal & proper.

The 2nd bank’s 3rd party specialists can access that info and tell you where it is. The 1st bank’s specialists may not see it without a trace number.

It exists and it’s their job to find it.

Once you’ve established whether the check has been cleared by the 1st bank, and you have found the right person who can look up Fed adjustments, then you’ll know where the money exists: either in the 1st bank (most likely) or possibly in the 2nd bank. But now you know.

Remember.. It won’t be in any of your accounts, it’ll be in the bank’s own area. They have to look for it differently.

4. Next step is to notify the bank/branch manager where the money is, and ask them to credit that money back to your account.

If that doesn’t go well, play Duelling Bank Managers: go to the bank that doesn’t have the money and, from the manager’s office, call up the one that does; the manager you’re with can ask them sweetly & precisely how to find it and get the money back to you.

This is one of the things that speakerphone was made for. Wonderful way to clear the path.

5. This is the worst part: the Fed adjustment may not land back in your bank (let alone your account) for 30 days. Then you can do whatever you like with it.

My 1st bank, now that they know where the money is and are sure of receiving it in time, are giving me a free loan on that basis, so the money is in my account now and I can go get it at last.

I’m gasping. Absolutely breathless.

Warning: verbatim quote — “the squeaky wheel gets the grease”… so if you’re working with a bank that isn’t culturally meticulous, be prepared to do a lot of squeaking.

I’m hoping the car dealerships will take cash, because I have jumped through enough hoops in the past 2 weeks, and I do need my own transportation.

Where to start? Head to toe

Isy / / basics, care team, definitions & descriptions, Head, Head to toe

I’m going to give organizing my mental database a try here. The aim is to pick one broad topic each month and cycle through them in a year. I’m doing it the way nurses and doctors are taught to do it: head to toe.

Physical assessments have to go from head to toe, every time, without exception. This makes use of the brain’s basic tendency to work in patterns. If you assess every patient from head to toe, every time, then the variances are easier to find (because your brain is so dialed into what to expect at that point in the pattern) and it’s a lot easier to get to a sound differential diagnosis.

If I go to the doctor with a sore knee, the doctor is still going to notice my level of consciousness, attachment to or detachment from my environment, track my gaze and whether the sides of my face are more or less equal, differentiate how much of my limp is because my knee hurts and whether any of it is because my balance is off (all of that is about the brain), notice my breathing pattern (lungs), become aware of blood- flow problems (heart) showing up in my skin, and checking to see if I’m “splinting” or bracing against pain or weakness in my abdomen (g.i/g.u. systems) and hips (ortho, right above the knee).

An experienced doctor does most of this in 1 to 3 seconds, because it’s a head- to- toe assessment every single time and they can just let their pattern-matching brain (which is powerful and primal) take care of it and send up a flag to their conscious mind if anything is abnormal.

The medical term for “head to toe” is “cephalocaudal”, which literally means “head to tail”… but humans don’t have much in the way of tails, and our bodies keep going for quite a ways after them. I’d love to hear from my Latin-knowledgeable readers what the term should be!

I’m recovering from a migraine, which is very on-topic, but I’m not yet up to writing much. I thought I’d introduce this new structure, which I hope will be a bit simpler and less overwhelming than “what am I wrestling with right now that I could usefully write about?” There’s so much to write about, it magnifies the intransigence of the empty page. (Writers know what that’s like.)

A head.