S-I-P / Quarantine

Unlike the Nora Roberts book, “Shelter in Place”, this situation did not involve a terrorist act which is quickly over, but leaves lasting echoes in one’s life.

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(Big Nora Roberts / JD Robb fan, and their audio books are keeping me company as I work to fill the hours and avoid Der Orangevone on the TV daily, as he thinks his idea of a “press briefing” is a great time to bully people, and hold a campaign rally).

So, we’re all working hard to learn the differences between S-I-P, Quarantine, Lockdown, and what we can and cannot do.  And, we’re getting lectures from friends and family about what “we” should be doing….

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with further clarification:

Can and Cants SIP guide

And, then we get to an update as to what “essential” businesses and workers may mean:

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Clearly, California is trying hard to define “essential” workers, and limiting access to seniors for cross-contamination of their fragile community members.

However, I submit to you that – so long as you have workers going in and out of the senior care facility on a daily basis, for up to 3 shifts per day, that you are still risking those seniors.

While I am being very careful to stay away from my friend with dementia, this extended period of time of her being refused visitors and being isolated in her room seems to be overkill – so long as they let their workers return home each evening to their family and especially their children.

It’s kind of the same argument that I have about airport security “theatre”.  Since most x-ray equipment can’t detect plastic weapons that don’t have a “gun” or “bomb” shape, it’s more theatre than actual protection.  As has been proven again and again when someone gets a plastic gun through security.

So, I tell you all that to tell you this – I’m not stupid.

I have been self-isolating for years, but especially since August 23, 2015, when my doctor finally agreed that disability was in my best interests.

So, to have friends (yes, the Melaleuca connection), feel free to go out for a ride in the country, ignoring all warnings about traveling beyond their local home area, and by not being out for any specific reason beyond the fact that they needed space and fresh air, all while lecturing me to stay home and let the kindness of friends and strangers strangle me to death with their caring, is entertaining.

Yes, I’m that perverse.  The minute you told me not to do something, you also guaranteed that I find a way to do it, and safely, while chanting, “You’re not the boss of me!” under my breath.

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The fact that I am still alive after numerous hospitalizations, despite being disabled, despite being told that my ability to get things done despite my breathing numbers is amazing…  blah, blah, blah.

At the end of the day, we’re all going to do what we think we “need” to do; what we think is “right” to do; and what we think that it’s “safe” to do; all without risking the health of ourselves and others.

When you’re number’s up it’s up.  My only goal is to not take anyone else with me when that time arrives because I was too stupid to understand what shelter-in-place restrictions really meant.

Be safe out there.

 

 

 

Cleaning Wars II

Melaleuca Logo

Melaleuca is a wonder product according to my houseguest’s sister.  While I love my friend to pieces, I’m not taking cleaning advice from her because she, too, believes subjective and sometimes deceptive advertising vs. knowing the truth behind her beliefs by doing non-sponsored research… Melaleuca falls into that category.  Everything sold has a scent, is costly, and is designed to get you to encourage your friends and family to use their products.

Yes, I checked it out years back, when first approached, and – no – I didn’t want to live in a plastic bubble.  If necessary to clean, I wanted to do it once via hydrogen peroxide and alcohol when deep cleaning is necessary to assure a sanitary surface.

If you use the Melaleuca products to disinfect, there is a fine print comment in the EPA approval that is buried in their advertising, that makes it too expensive in terms of time and money to make Melaleuca products my first choice for cleaning materials:

Melaleuca EPA 03

Melaleuca EPA 04

 

and, on page 5 of 5 of the EPA 2011 posting available on line:

Melaleuca 05 EPA

Why in the world would I use ANYTHING where 95% of the ingredients aren’t detailed on the EPA letter or the product, and where further warnings as directed on the label by the EPA indicate that this product can be hazardous to people and pets?

At any rate, as a continuation of my earlier blog, “Cleaning Wars“, dealing with the landmine that is everyone’s opinion about what you need to do to have a COPD-clean environment that works its best for you is no easy task.

As with most of us, we don’t have much energy, so we don’t want to do anything twice.

Here’s the crap that’s on their feel-good website that irritates the crap out of me:

Melaleuca Company 01

Key triggers for me?  Anything that purports to help MY finances and my quality of life, while also telling me it can also help me “reach my goals”.  They have a really slick advertising company or marketing firm helping them reach people’s soft and gooey underbelly without even a blip on most people’s radar…

Melaleuca Company 02

Given the advertising of their botanical cleaner to not say that it’s a cleaner, but merely that it’s a disinfectant, for use AFTER you actually clean:

Melaleuca 02 - Botanicals

And the disclaimer in their online ads that actual cleaning needs to be done BEFORE using the disinfectant if one wants a truly clean surface:

Meluleuca Ad 01 - Bathroom

“Final step”, implying that this is to be used AFTER you actually clean.  Nope.  No thanks.  Not only does it make more work for me than my regular cleaning, it’s also only available in a scented product, making the scent wars in my home more of a challenge, too.

So, I remain stubbornly assured, based on EPA evidence, that my choice of alcohol and soap and water as a cleaning / disinfecting agent is the best choice vs. doing things the Melaleuca way.

Cleaning Wars

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Well, after last week’s “FOOD WARS” posting, the houseguest and I got into it over her demand that I give her her own shelf in the fridge.  Seriously.  She has 3 half shelves, so that we can take advantage of size alternatives, and she’s taking over my half of the space, but she thinks that I’m being dictatorial in not giving her a single shelf for her own use.

The houseguest who is homeless.

The houseguest who lives with me for free.

The houseguest who has been here since July 16, 2019…  Going on 9 months…  And she picks a pandemic, when we’re on shelter-in-place directives, to start picking fights over me being controlling.  Now she has decided to debate my cleaning choices.

Me, who got bacterial pneumonia from her bringing a cold home in February.

Think about that a minute.

I’m sitting here fighting for my life, actively, every day since August 23, 2015, when it was confirmed that the medications they were giving me weren’t working well enough to help me versus their dangerous side effects.  It was determined that I go on permanent disability, and that I figure out how to live the rest of my life (maybe 3-5 years at that point, but there were no fixed timelines or date stamps on my foot because everyone reacts differently to triggers and their version of the COPD illness).  So, you’d think I would have learned a bit about my triggers in my 55 years of living up to that point, as well as adjusted my needs as my COPD continued to worsen.

At age 59, I am as healthy as I possibly can be, despite 25% lung function / lung capacity, and approximately 92-96% routine oxygen saturation.

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Trying to avoid breathing issues as most scents and aerosols trigger difficulties, I have made it my mission to clean as simply / quickly as possible to avoid exhaustion (hey, it only took me 4 days to clean the kitchen floor when the houseguest was away having her knee replaced, LOL).

Generally, I use 70 – 91% alcohol (whatever I can get inexpensively in the first aid aisle), with the addition of peppermint oil (because it helps me breathe, and doesn’t cause any coughing spasms).

The houseguest hates this, because it smells “too hospital-y”.  Seriously.

Screw the fact that I can’t breathe with the scented crap she keeps trying to sneak in !

So, as we’re on lockdown / shelter-in-place, the houseguest is becoming increasingly paranoid, not wanting to go out, not wanting to be in the fresh air (even away from people!), and she decides that “we” need to do a better job of cleaning with a disinfectant.  Seriously.

As always, she’s free to use whatever she wants in her bedroom (not my concern, as long as it doesn’t travel to the rest of the house), but I have had to put my foot down again and again that the crap that she wants to use – when she actually bestirs herself to clean our common areas – may smell better, but works WORSE than my affordable and very effective solution.  To back up my belief that alcohol is better with scientific references:

Isophoprol Kill Rate

What makes me crazy is that most of the crap she wishes to use, because it’s all about what the media has “educated” her via commercials, takes 2-10 minutes to be effective in terms of truly disinfecting a surface, while straight alcohol at 60% concentration or above, kills in 10-30 SECONDS.

For someone who has made an art form out of how to survive, 10-30 SECONDS for cleaning / killing / sanitizing effective rate sounds much more livable for me than waiting 2-10 minutes for something to take effect, never mind the habit that we all have of wiping / drying a surface vs. letting it dry for 2-10 minutes…

Lysol cleaning time

Lysol Neutra Air vs. other

Lysol Deodorizer

Clorox Bleach

Lysol Tub and Bath

Why in the world would I want a slower-effective product, especially an aerosol that messes with my breathing ability, to be used in place of alcohol???  Never mind the fact that I have limited energy and already need to take frequent breaks when cleaning, so why extend the time involved in cleaning properly?

And, why pay for a brand name when the product exists, cheaper, in the first-aid aisle (and there’s no run on this aisle in the stores as most people buy into the ads vs. truly understanding the difference between ethanol, alcohol, and over the counter / OTC commercial products)???  When I tell her that 70% alcohol works better and doesn’t hurt me, I get an argument that I’m a know-it-all from someone who refuses to hear that this is my house, and that she’s lucky to stay here and be having these debates, especially considering she is a guest.  She refuses to back up her beliefs by showing me, with outside scientific opinion, that I am mistaken.  So, we’re at a stalemate.

No bueno.  Pouty temper tantrum and back into her bedroom she goes…  I am living with a 64 year old teenager who wants what she wants, regardless of its impact on my ability to survive.  Exhausting.  And that’s before we get into how exhausting it is for me to do anything on a regular schedule, never mind when it’s deep cleaning (vs. simply picking up clutter and thinking that a space is “clean”).

Having this shelter-in-place edict extended out to May 3rd may just end up killing us both.  I can put up with a lot, but her nerves are getting on my last nerve.

cleaning-stuff

 

 

FOOD WARS

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If the passive aggressive fight over cleaning standards doesn’t end in violence, the foot long brown hairs in the fridge and space for each of our food needs is going to end in violence.

Seriously, it’s only Day 6 of California’s shelter-in-place edict, and we’re mostly keeping our distance and finding out after-the-fact what the other person did to get on our last nerve.

700 square feet of living space is VERY tight quarters when 100 square feet belongs to each bedroom (thankfully at opposite ends of the house!), leaving 500 square feet of communal space for skirmishes or negative, passive-aggressive drivebys.

It’s especially brutal, though, when one is the homeowner, trying to make a homeless house guest feel welcome.  And, when the houseguest is 64-going-on-16, and entitled.

Immunocompromised, I’m fighting for my life after already contracting bacterial pneumonia from this guest after she brought a nasty cold home from her visit to her grandchild over President’s Day Weekend.  She doesn’t understand why I’m on disability as I look well enough.  So, she takes risks, uncaring and indifferent to the reality that I may pay a price from her choices or actions. (the image at the top of this blog shows dishes fully covered with hot water, soaking in soap, before I begin washing the dishes).

This image shows her typical preparations for dish washing, in cold water, with minimal soap:

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She can’t wash dishes worth a damn, refusing to soak them – totally covered – in hot, hot water for a bit before scrubbing them, and insisting on rinsing the still-crusty dishes in cold water.  Never mind using a disposable pan again and again, because she’s claimed it as hers, when I don’t want crust-covered items put back among the clean dishes.

Oh my freaking gawd !

My Mom used to BOIL the dishes water before we had an actual dish washing machine, so I think I’m being reasonable in insisting they merely sit for 30 minutes or so in 140 degree hot / hot water before leaving the dish rinse water on to achieve the necessary warm-to-hot dish rinse water.  (This is an old, old house, and it takes time for the hot water to make it to the sink from the heater).  No burning of skin on hands, you understand, but pretty close.  Just call me “Marilla”, LOL.  (Marilla from the Netflix series, “Anne with an E” in the frustrated homemaker on the right).

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I’ve been going on walks around the fields near my home, trying to stay busy and healthy and not exchange the harsh words hiding behind my teeth as we endure month 9 together.

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But, the food wars and related cleanup may be my breaking point.

My food storage is getting shoved to the side, touched with unwashed hands (yet another point of difference in our habits), and as she crawls in and out of the fridge shoving more and more food into the fridge that doesn’t require refrigeration as this pandemic is stroking all of her fears of being helpless and starving, leaving foot long spider’s web hairs tangled among the condiments and tripping me up when I’m reaching for something, I’m reaching my breaking point.

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(her frozen items are to the left, as her ice creams and other foods crowd my homemade, healthier, food, and I’ve had to remind her that I only get paid once a month, and she is NOT to take all my food storage space as I eat my way through my stored meals).

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(I have the upper left, with water and thawing frozen, 1 cup meals.  Then, my omelet making materials – more protein – is getting squeezed out on the right on the second shelf.  And, the bottom shelf is getting more and more hers as she stores every kind of bread known to man in there, and it’s pressing all my buttons in this petty fight for reasonable access to space).  Now I understand why the Real World MTV series fights were always about food and the kitchen !

We aren’t Jewish, and I don’t run a Kosher kitchen.  But, it might be pretty close by some standards.  And my OCD for order in the fridge, and cleanliness, are getting on my last nerve – never mind hers.

We *will* get through this passive aggressive war for space, but is it so wrong to know that I’m counting the days until she finds subsidized housing – anywhere but with me! – sooner rather than later?

Sadly, with the disabled and elderly on the list of most likely to pass, I’m also hoping for a bright side to someone else’s misfortune.  Puhleeze, if there is a God, let this pandemic get my houseguest higher up on the waiting list to get a place of her own.  We will both thank whatever powers-that-be…

Declined. Again.

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Obviously, I’m frustrated.

First, because I have to spend HOURS on the phone trying to figure this drama out.  Second, because after spending all that time on the phone, the answer remains, “No.”

Under Obamacare, I was able to get medical coverage for the first time since 1992 that I could actually use.  2013, I had skin cancer in my shin, and they covered the cost of that surgery for $8,xxx and my out of pocket payment was $860.  $860 for surgery that saved my leg, if not my life.  Life changing.

I worked a Corporate job with excellent benefits from 1979 thru 2015, however, the coverage I paid for was not always usable by me due to my birth defects.  Rather than play the denial game, I simply lived beneath my means, and paid out of pocket for anything I needed.

I don’t drive a Cadillac or fancy sports car, so I don’t need a fancy medical plan.  However, the simple existence of my birth defects becoming public knowledge in 1992 when my medical records went digital meant that I routinely was denied medical care, and “No.” became the standard response for actually using the insurance that I paid for with each job.

With my departure from Corporate America in 2015, the battle for medical coverage reached new heights as I fought for coverage under COBRA for $644 per month.  And, as Aetna, my new insurer under my employer, decided that “No.” was now its favorite word.

In June 2016, I was finally approved for long term disability (LTD), and a 2-year waiting period to qualify for Medicare was also started.  Seriously.  I’m disabled, but there is zero insurance coverage?  Mind-blowing.

So, I paid my COBRA through December 31, 2017, with the knowledge that the benefits would be exhausted as of February 2018.  I tried to select a policy to cover me for my medical needs, but was told that I could not choose it until I was approved for Medicare, which happened mid-year, AFTER the open enrollment period.

There was no counseling for Medicare coverage, and I had to wing it on my own.  I contacted AARP who sent me to United Health Care (UHC), and they promised to cover me for a Medicare Supplement plan for about $150 a month.  I gave verbal approval to complete the forms they would send me, and they took $150 out of my Social Security Disability Insurance (SSDI) check each month, before I saw a penny.

However, no forms were signed.  Why?  Because, when I got to the question, “If you have COPD, please see question 7.”.  In its pre-qualification forms, UHC then informed me that I did not qualify for a Medicare Supplement as I was under 65 and had COPD.

Did you know that there are two (2) sets of rules for folks to qualify for Medicare?  No?  Well, let me tell you.  The protections that apply for workers who retire at age 65 or above are very different than the guidelines (not protections, but “guidelines”) which apply to disabled people under 65 or their specific age of authorized retirement.

Working since I was 13, I have paid into Social Security EVERY year for 42 years (excluding the year that my employer absconded with my tax and SS payments in 1975).

SSDI Earnings Record life long

It makes me crazy to have paid into my benefits for all these years, dealt with the denial of coverage for many of those years, finally gotten the necessary coverage my payments should have yielded under Obamacare, only to go back to this whack-a-mole game of trying to obtain the disappearing benefits – even when one is required to pay yet again for necessary coverage !

As you can see from my crazy paycheck history, my income changed all the time based on health, what type of job I was working, family issues for changing jobs and relocating, etc., etc., etc.  But every single year – regardless of what was going on it my life – I paid into the program(s) meant to help me if I became disabled or achieved retirement age.

So, it’s maddening to be declared unable to work, and then find out that in addition to the changes that were made to Social Security and Medicare over the years, there was an additional change that prevents someone who is not indigent and not yet of retirement age, to qualify for the necessary medical coverage they need when disabled.

Medigap insurers

Having worked my way through their websites (useless !  one cannot enroll on a website – WTF !?!???) I am at my whits end.

I can see a great policy – if only I were allowed to exercise the right to buy into this supplemental insurance !

Medigap F

Starting with the thought that my premium might be between $21 and $74 each month, imagine my surprise to chase this ever-evading insurance company ball all the way to the point where my costs would be $455.99 per month – if only I didn’t actually NEED my insurance due to my pre-existing condition, COPD.  So, having wasted time attending seminars, combing the website, consulting the professionals, and having spent three (3) hours on hold this morning, going through the phone tree with various companies, I once again confirmed – there will be NO INSURANCE COVERAGE for me due to my pre-existing condition.

It doesn’t matter that I never smoked.

It doesn’t matter that I’ve not been hospitalized since childhood.

It doesn’t matter that I’m not on oxygen.

It just matters that I have a lung disease which MIGHT cost them some money, so I get zero insurance coverage except for what remains of the original Medicare coverage which has been cannibalized within my lifetime to deprive me of benefits originally paid for when I first signed up for coverage in 1974, when I was a child of 13, starting my first job and trying to survive while my parents marriage imploded.

So, with all this under my belt, I’m going away to get my monthly haircut.  I’m out of energy and any semblance of patience for today, so I will be at this keyboard again tomorrow trying to find an insurance company to throw my money at in the hope that any worst-case medical expenses not covered by original Medicare will be picked up by them.  Medicare Allies says they can help.  Let’s hope they are being truthful in my case:

Medicare Allies 2019

Medicare open enrollment is frustrating.

So needlessly exhausting.

We need socialized medicine that doesn’t deny one coverage due to birth defects.  If we are going to insist on keeping these children alive by repairing their birth defects, then we need to have a medical insurance program that ensures that they maintain quality of life without being driven into poverty through covering their medical needs – if they are able to work, or were fortunate enough to be able to work and buy their way into benefits at some point during their lifetime.

Actions have consequences.  If we are going to insist on life at all costs, then we also need to insist on QUALITY of life by allowing those people who have birth defects to protect their assets against raiding.  The stress from trying to juggle all the bills involved in remaining healthy is exhausting, and no one is well enough, in my humble opinion, to want to sign up for this medical denial of coverage dance once a year during open enrollment, or every time they have to use the actual benefits they’ve paid for.

 

 

 

“Womanly” potential

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After “Quincineara Beat Down“, you can see that I’m struggling with a topic, and still trying to find a way to say EXACTLY what I mean.

At this point, I’m still struggling with my lack of sexual activity.  Part of it is due to my underlying illness, and part of it is due to family obligations where my partner is raising his foster son (again), and being the primary caregiver for his 80-year-old Mother. It’s a long and complicated story, but it’s sufficient to say that I’m not getting any and it’s ok.

But, just because I’m not getting busy with anyone does not mean that I am blind to the reality that women are facing today – the fact that we must be “feminine” and “womanly” before we’re anything else.

That focus on womanliness has been the bane of my existence because I’m not a girly girl.

In fact, if you’d asked me, I’m more like Mr. Spock on a good day, with everything being analyzed, especially intimacy and sexual issues.

For me, the need to don war paint, wear “feminine” clothing, and otherwise be anything but what I choose to be on any given day just feels like a fraud.  Why aren’t I good enough, just as I am, straight out of the package?  Why must I be dressed up and focusing on my appearance 24 x 7 x 365 in order to be “womanly”?

No answers here, but it’s still lingering in the back of my brain as the liver doctor wants me to see a nutritionist (which appears to be code for bariatric surgery), and I want nothing to do with that request if it involves surgery, or if it means I’m going to lose weight.

My weight is part of my wellness program (moving to CA 33 years ago and putting on 60 pounds happens to be choices that allowed me to live much longer than expected, AND stay out of the hospital).

 

Diplomacy challenged.

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I belong to the MyCOPDteam website, which is a support group for people battling COPD and trying to find resources in fighting this crazy disease.

I say COPD is crazy because even the so called “experts” on the disease – the docs, respiratory specialists and patients themselves – can’t all agree on it’s causes, triggers, definitions, etc., etc., etc.; making for a rollercoaster ride of things to consider and try in order to remain healthy on a case-by-case basis.

Into these care and treatment considerations come the various personalities of the patients and their caregivers and loved ones, willy nilly, with very little opportunity to filter in or out anyone who may be unhealthy for your individual state of mind.

There are key issues to be addressed with any chronic health issue, but the most important questions don’t get addressed until much further in the online support community, long after you have emotionally engaged with an internet friend or foe and their health outcomes.

Being a crabby New Englander, I was taught that a friend, no matter how boon a companion in real life, is still an “acquaintenance” until you’ve known them and been friendly for at least five (5) to ten (10) years.  What then are the rules for boundary management in internet life?

The reasons for the 5-10 year minimum getting-to-know-you period or reasonable limit is because people lie.  Or prevaricate.  Or put on one personality in public, but may actually be a whole other soul-sucking personality over time.  Until you’ve been in the trenches with someone, you don’t know who they are, but rather have bought a bill of goods they are selling you about their personality.

Into this picture comes the art of real life vs. internet life, and how well one manages the graces and decorum in the troll-filled universe we sometimes inhabit in the internet determines in a big way whether or not one is a fan of spontaneous interaction.  With strangers.  And their relatives.

I’ve done pretty well in the 1:1 world of Better Breather Classes.  I am who I am, and I participate fully.  Take me or leave me, but you won’t say you didn’t “notice me”.  And, we all have an unstated but clearly understood rule about manners and communication and kindness.  When in doubt – don’t say it, don’t do it – keep things running smoothly and ensure everything is non-confrontational and polite.  Everyone handles their chronic illnesses differently, and it’s not my business to police your interactions with others.  There is no “right” way to handle how you deal with your illness aggravations and vulnerability as you age.

I’ve also done pretty well in the world of internet dating, breaking through the safety wall to meet and date (or drop) the object of my potential lust and affections.  Because of the boundaries I created to protect my real world identity, few people got to be facebook-level friends  as my answer was always, “No.  You have my contact info on this (other) site.  Until we meet in the real world and decide that we know what we want from each other in terms of public behavior and manners, we’re fine staying friends on this (other) site and not on facebook.  There is no “right” way to handle how you deal with your love life and carnal desires, but I draw the line at starring in an episode of “Cheaters”, or of having your relationship drama rain all over the people in your life – online or in the real world.

So, with these experiences in mind, as I’m dealing with the bleed-thru of the MyCOPDteam friendly acquaintenances and their connections into facebook, I’m finding more things are getting on my nerves.

First, I’m not religious, so the whole “Prayer Warriors, I need your help” demand as a constant background battle cry is exhausting.

Second, we don’t all deal with the inevitable complications and end of life decisions the same way, so my diplomacy is being stretched thin as I go on facebook at all hours of the day and night, unprepared to deal with what can be endless drama in my otherwise lighthearted facebook experience by people who are chronically ill and showing their chronic illness panties – intentionally or otherwise – for all the world to see and remark upon.

Unless it’s siloed among my own family and extended family members – a place where it’s much easier to identify the landmines and avoid them through years of real-world exposure – I don’t wanna know.