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Inner World, Outer World and Credibility

There's a story of two bricklayers being asked what they are doing and one says "I'm building a wall" and the other says "I'm building a cathedral."

When I worked at Aflac processing accident claims, reading ER reports and police reports all day everyday as part of my job, coworkers often seemed traumatized by the job. In five years, I think there were between three and five claims that bothered me in a "take it home with you and have it interfere with your sleep" kind of way.

I was a former military wife, homeschooling mom of twice exceptional kids and I have a serious medical condition. Most of the reports I read were not enough to get a rise out of me.

We were allowed to wear t-shirts on casual Fridays if they had the Aflac logo. One T-shirt some people wore said "Property of Aflac."

One of my coworkers one day remarked "I'm not going to wear that one because I already feel that way too much sometimes."

I never felt that way. I never felt like Aflac was the biggest thing to ever happen to my life. To me, it was just a day job, a paycheck I needed. It wasn't psychologically eating my world in spite of the fact that it was, in some sense, eating my week.

I used to dream of my job as giant furniture taking up a lot of space in my home because I was too sick to do more than go to work, eat, sleep etc. I had no hobbies and no friends and no life.

Or so I felt. Other people online: "How do you have the time to post so much to email lists and create websites????" My sons: "Yeah, you took up new games during that time. You spent entire weekends playing Master of Magic."

I used to dream of my ex husband as a metaphor for my job. I was working for the man and my marriage had previously supported me. Now my job did. 

My dreams said my job was "the man in my life." They said I was "married to the job."

And yet it didn't have the same psychological impact on me that it had on my coworkers.

What was eating my world was battling CF and trying to figure out how to navigate Hacker News as a woman.

The rest of the world: "You don't really have CF and if you do you're not really getting well. You're a deluded nutter making that up because you're a drama queen suffering from Munchausen Syndrome."

Also the rest of the world: "Being the top ranked woman on Hacker News doesn't qualify for an AMA. It's not that significant."



CF is supposed to cost a quarter million annually in medical expenses and also require five thousand calories a day so you can barely hang on while looking like a concentration camp survivor.

Me AND one of my two sons has a form of CF. That's theoretically a half million annually in medical expenses alone plus high food costs for both of us.

Between the two of us, that's an estimated high forty million dollars NOT spent on medical care over our two lifetimes so far.

When I used to participate on CF lists, I saw comments from people like:

1. "Get a better policy. You will quickly hit the million dollar cap on inpatient treatment."
2. "I have wonderful insurance. I took $100,000 worth of drugs last year and hardly any of it was out of pocket."
3. "My podunk crappy trailer is in my son's name so the hospital can't repossess my home though I have no hope of paying my medical bills."
4. "Something happened and I lost our medical coverage. I'm freaking out about how to cover $1000 a month in prescription drugs."

When I was still a military wife and newly diagnosed, I got most of my prescriptions for FREE. A few times, they sent me in town for something not carried at the military hospital.

During my divorce, I tripped across a pharmacy receipt: I paid $39 out of pocket for like $1200 worth of pills.

Part of that was prescription digestive enzymes which I and my son haven't needed for YEARS.

It was probably three bottles of something because my recollection is my copay was $13 per prescription.

I drove from Travis AFB 45 minutes to a physician in Sacramento UC Davis medical center and they had a prominent sign at the front desk about denying treatment if your bills were overdue or something. I was super sick and they never charged me anything but one day I asked did I owe them anything and they checked and said no.

I didn't ask how that happened. I was trying to not die.

I told that story on a CF list and assumed the CF Foundation must have covered my $7 office copay or whatever the fuck and someone schooled me that, NO, that's not something the CF Foundation does.

No clue how that happened.

I was personally acquainted with someone who was working at the CDC and had civilian insurance. This was before I had an insurance job.

She told me one day "All those scans and tests etc you had this year? It's probably $25,000 worth of medical care."

It cost me NOTHING except for:

1. A small copay on antibiotics or digestive enzymes that I had to get in town. Most drugs were FREE.
2. Gas and incidentals for driving to Sacramento and San Francisco for specialty care not available on base.

Anyway, I keep getting told I'm a deluded nutter and don't know fuck all and have never accomplished ANYTHING etc. And I don't know how to engage with this shit anymore.

I get it: I've lived a very private life and I have no "proof" any of this is true. 

But I have no idea how to get proof it's true when people are unwilling to take it seriously at all and just dismiss it out of hand.

On the upside, unlike most women, I don't really care what you think of me because I have objective irrefutable evidence I'm correct and never mind what other people say. 

So it's been good for my sanity in a lot of ways, but it's hell on my credibility and that is hell on my bank account.

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