Category Archives: Plagarizing myself

Got a Story?

On Monday, September 25, 2017, the Senate Finance Committee will hold a hearing on the disgusting excuse for a GOP replacement plan for Obamacare — the “GOP Doesn’t Give A Shit Plan” I believe is the working title for the bill.

The Senate Finance Committee is looking for stories.  Healthcare stories.  What your life is like as a person with health issues, or with family members with health issues.  Or with the expectation that some day you will fucking get sick.

Comments can be submitted to this email address:

GCHcomments@finance.senate.gov

Comments are due by noon, Monday, September 25.  Go on over there and give them a piece of your mind.  Or hell, tell them what I think if you’re at a loss for words.  Or just say:  “This bill sucks.”  Copy your message to your own Senators (addresses can be obtained via Senate.gov).

It’s important.  Because look at this:

Cassidy-Graham

I cordially invite you to post a link to your own story here on my blog.  Hell, I’m not using it much these days!

Me?

Well, you know the story I will tell.  About what can happen when a person has no insurance.  Of course you do.  But just in case you’ve forgotten …

* * *

The End of My Rope

Friday, the first of October, 1982, was a really bad day.

Actually, it was a mostly normal day even after I found a memo and a pamphlet in my office in-box. The law firm where I’d worked for more than three years had just changed health insurance companies. The information about our new policy, beginning November 1, 1982, three weeks before my scheduled surgery, would be with Liberty Mutual. I didn’t give it a thought.

But Andrea, one of my bosses, suggested I give them a call. “You’d better make sure they know about your operation and don’t need more information.”

So I called the number on the brochure.

Forty-five minutes later, Andrea found me at my desk, staring blankly at the ‘Sitting Duck’ poster hanging on my wall. It showed a white cartoon duck wearing sunglasses.  He’d been enjoying himself, sitting in the sun in a turquoise blue lawn chair on the side of his house, sipping a soda.  But he was looking in wide-eyed surprise over his right shoulder at two bullet holes in the wall.

Sitting duck poster

Poster by Michael Bedard
http://www.mbedard.com

I knew that if I looked over my shoulder, I’d see some bullet holes as well. I was that sitting duck — I always seemed to be dodging bullets.  Life with chronic illness had become one fucking thing after another.  Now, just when I’d accepted and agreed to the surgery that so terrified me, my insurance was gone.  BANG! BANG!

“What’s wrong?” Andrea asked.

“It’s not covered,” I said, numbly, without a hint of emotion. Then I began to hyperventilate. “’Pre-… pre-… pre-existing condition,’ they said.”

“What?”

I explained what I’d been told, that the new policy didn’t cover anybody for 30 days and that it didn’t cover pre-existing conditions for a year. The firm had changed insurance to save money. Their decision would cost me everything. Everything.

I didn’t want to have the surgery — it terrified me. But I’d adjusted, accepted that I was, in spite of my attempted denial, quite sick, and that I had to have the operation. But I couldn’t possibly pay for it. Where was I going to get the tens, maybe hundreds of thousands of dollars I’d need? I lived pay-check to pay-check, and rarely had a nickle to spare; I had no savings. My parents were retired, living close to the bones themselves. My siblings were likewise broke. And I had insurance!

Loss of the insurance meant one of two things.  I could have the surgery that I really didn’t want to have anyway and pay for it myself. Or I’d face another year of ever-worsening illness — hemorrhages, bleeding, weakness, diarrhea.  Dr. C had been clear — my colitis was not just going to go away, as much as I wanted it to.

Without insurance, even if I could convince my surgeon, the hospital and the zillions of other folks involved in a major operation to actually do the surgery on someone without insurance, I knew that I would spend the rest of my life trying to pay the bills.  Bills that would have been covered just the day before.

My mind whipsawed between the injustice of the loss and terror at what would happen to me if I didn’t have that damn operation.

Andrea came around to my side of my desk and put her hand on my arm. “We’ll figure this out, Elyse. It’s late now, everybody’s gone. But we’ll work this out on Monday.”

She sounded reassuring; I was unconvinced.

“Really, it’ll be OK,” she repeated. “But in the meantime, I need you to …”

Her voice trails off in my memory. Andrea was a compulsive workaholic, an A-type personality. Work always came before anything else. Other people at the firm thought it was annoying, insensitive, or worse. But for me, it helped. It was exactly what I needed. It took my mind off me. I did what she asked, finished up and went home.

Of course I fell apart once I was home and told my roommate, Keily, the news. I ranted, raged, and cried — I wallowed all evening.

“I don’t even want to have this operation,” I shouted as loudly as I could to Keily as I sat in the bathroom, the door open. My gut, naturally, was erupting. It almost always was by then, especially when I was upset. Cramps. Diarrhea. Blood. Urgency. My shitty symptoms mocked me, proving that I couldn’t avoid the surgery. That I couldn’t put it off until my insurance kicked in. That I was totally screwed.

Keily sat outside the bathroom at the top of the stairs, stroking Goliath; that was her perch as I got sicker and sicker. She sat there and talked to me. She kept Goliath out of the tiny bathroom (Keily’s only successful effort at getting the Goose, as we nicknamed him, to obey.) That night, she held Goliath, and soothed him and me at the same time. She let me vent, rage, rant.

“It’ll work out. There’s some mistake. They can’t just do this to you. You need to trust the folks at your office.” Keily said repeatedly.

“You mean the ones who agreed to the new policy?” I wasn’t in a mood to listen.

That night I’d skipped Goliath’s after-work walk. It was getting on towards 10 p.m. and he needed to go out. I needed to do something else, or at least cry somewhere else. Walking clears my head, lets me figure out how to fix a problem, helps me find an answer. I knew a walk would help.

“Do you want me to come?” asked Keily. She often did, and that night she was concerned. I was so shaky and upset.

“No, thanks, I think I need to be by myself,” I responded. “I’ll be OK.” Actually, I was wishing I could leave myself behind. I was sick of me. Sick of sick me, anyhow.

So Goliath and I got into the VW and headed to the Capitol grounds, where we walked most nights. It’s such a beautiful, inspiring place. Plus for a woman walking her dog, it’s perfect. Of course it’s well lit — you can see it for miles. But there are also security patrols that never bothered us but nevertheless made me feel safe. A 120 lb. German Shepherd helped make me feel secure, too.

It was a clear night, with a half-moon casting shadows from the beautiful cherry and oak trees, from the enormous rhododendron bushes and other carefully tended shrubs across the expansive West Lawn. Nobody else was in sight.

I let Goliath off his leash. Deep in my own thoughts, I didn’t pay much attention to him. Unusually, he stayed right with me that night. He was as worried as Keily.

I cannot believe this is happening to me, I thought, rage building again at the injustice. Because my whole entire adult life had been focused on making sure I had health insurance.

From the time of my first hospitalization at 17, I had lived my life — made every single decision — with health insurance in mind. My dreams of acting, of singing, of writing? Of doing whatever the hell I pleased? They’d all been flushed down the thousands of toilets I’d had to rush to over the 10 years since my diagnosis.

After my first hospitalization, and with word from the doctor that my ulcerative colitis would likely flare up repeatedly throughout my life, my parents forced me to go to secretarial school – a career path that had never figured into my plans. My mother was an office worker and she’d always hated her job.  It seemed boring and demeaning. Secretarial work had once been a good career path for bright women. But that, I thought in my young “know-it-all” way, was no longer the case. Mom was stuck with it, and she and Dad stuck me with it, too.

I complained bitterly; I was talented, funny, smart. It wasn’t fair.

I was wrong about both the work and the women who worked as secretaries. I quickly became pretty ashamed of my attitude, and some of the secretaries I knew became great friends.

Still when the chance emerged to turn a secretarial job into a job as a legal assistant, I jumped at it. In the job I’d had now for three years, I wrote for a living, analyzed legislation and regulations for the firm’s clients and learned about U.S. politics and policy. It was a terrific job. The firm had been good to me. And my parents were happy because I was still working in an office. With health insurance.

Another wave of anger came as I walked down the groomed hillside.

And then I saw it. Something I’d never seen there in the dozens of times I’d walked that route. Inexplicably, on the West Lawn of the U.S. Capitol Building, there was a pole sticking out of the grass with a chain attached at the top, and a ball hanging down.

Tetherball.

I walked up to it and started smacking that ball. I’d only seen cheap sets with rope attaching the ball to the pole. This one had a strong chain that was covered in a canvas sheath. But instead of improving my mood, hitting the ball deepened my feelings of desperation.

SMACK. I hit the ball as hard as I could. “MY BODY HATES ME!” I shouted as I pushed the ball around the pole.

WHACK. “MY LIFE SUCKS!”

SLAM. “Fucking, fucking FUCKING INSURANCE!

SMACK, SMACK, SMACK. “Hopeless. Hopeless. Hopeless.”

With each hit of the ball, I pushed myself towards the end of my own rope. There was no way to unravel all the problems I was facing, the problems that kept expanding.  Just as I thought I’d licked one, it would multiply. No way to fix all the crap that kept piling up. Crap that I suddenly felt that I was facing alone.

That was the moment when I realized, with surprising clarity, that life just wasn’t worth the trouble. At least mine wasn’t.

I decided at that moment to hang myself. I would hang myself from the tetherball chain on the grounds of the U.S. Capitol.  It suddenly became the perfect solution.

I saw no way out. I couldn’t continue, didn’t want to continue. And I’d gotten way past the amount of shit I could deal with.

I sat down on the grass on the hill just above the contraption and allowed myself one last cry. Naturally I didn’t have any Kleenex. Snot running with my tears did not make me feel any better.

The first problem I discovered was that I couldn’t quite figure out what to call the thing. It seemed important that I know what to call it if I was going to die on it.

I wondered: Is it a tetherball set? A tetherball apparatus? A tetherball thing-y? I didn’t know the answer.

Goliath tried to distract me, to cheer me and when that didn’t work, he sat down next to me and let me use his shoulder. He tried to lick my tears away, but they kept coming. He butted his head into me. But he got bored with my misery and wandered away.

I didn’t watch where he went, I didn’t care. It didn’t matter where he went, what he did. Whom he harassed. I was done.

The decision was made.

I got up and walked up to the tetherball thing-y and realized what I hadn’t noticed before: that the chain was actually quite short. Too short, possibly, for my plan. The ball itself fell to just the height of my shoulder.

I was shocked. How am I going to do this?

I reached up, stood on my tippy-toes like a kindergartner, grabbed the chain in my left hand, and tried to pull it down a little more. But it was a chain, so it was very strong and not at all stretchy. It was also pretty thick, about 2-1/2 inches wide and not terribly pliable.

I stood there, grunting, sobbing, trying to stretch my body. I held the ball and the bottom of the tether chain in my hand, trying to figure out a way to make this work. Wondering if I could quickly have a growth spurt.

How can I get this short thick thing around my neck?

Even on my tippy-toes and pulling it as hard as I could, it wasn’t long enough. It just reached from my chin to my shoulder — not even half way around my neck!

What sort of an idiot designed this damn thing with an impossibly short chain? I wondered. You can’t even smack the ball around the pole more than a couple of times.

Not to mention that it wasn’t at all helpful for putting me out of my misery.

I pursed my lips and moved them from side to side like Charlie Chaplin’s little tramp. I rubbed my chin and scratched my head.  Tried to solve the shortcomings.

Naturally, other problems popped up too.

What can I jump off of?

Of course, the answer was “nothing.” I was on the manicured grounds of the Capitol. I couldn’t pile up debris and jump off of it because there was no debris. The neat grounds rarely had much in the way of move-able objects.  I was starting to get annoyed.

I want to die. Now. Tonight. On the tetherball thing-y. How the hell can I do this?

There on the West Lawn of the United States Capitol Building — with security patrols passing every 10 or so minutes — I was hell-bent on committing suicide by tetherball.  I was trying to stretch, to grow, to find a ladder, a chair, anything I could jump off of with a piece of US Government-issued sports equipment wrapped around my neck. Wanting to and trying to die.

And then it hit me.

Or rather, he hit me. Goliath, of course.

SLAM! Something hard hit the back of my legs.

“Owwww!”

From somewhere on the grounds, Goliath had picked up a huge stick – an uprooted tree by the size of it. It was at least five feet long and four inches around. His mouth was stretched to the limit holding it. And he’d hit me with it in the back of my legs.

WHACK! He did it again. I turned and saw that he’d lowered his chest towards the ground into a bow. He kept his rear end high in the air, wagging the whole back half of his body ferociously.

He’d had enough of me feeling sorry for myself. It was time to play. So he rammed me with it again.

“Owwwww, Goliath STOP THAT!” I commanded.

He didn’t listen. He went around to my left and hit me with it again. His eyes caught the moonlight – they sparkled. He was laughing at me.

SLAP! “Owwww, NO! That hurts. Cut it out!”

He bounced to my right side with the long thick branch firmly in his mouth. Pretending to loosen his grip on it. Teasing me. Trying to get me to play. Wanting me to reach for the stick, which he would never give me.

(Come on, Mom, catch me!) He was play growling at the stick and at me. He bowed again, swung his head to and fro, and the long stick swung left to right, wobbled up and down. It got stuck in the ground for a second, and then he forced it back out again with a flick of his massive head. Goliath came close to me and then bounded off with his treasure. Circling me. Approaching me, but backing off before I could get to him. He never got close enough for me to grab that damn stick.

(Come on, Mom, try to grab it!) We were going to play, whether I wanted to or not. And he hit me with the damn thing again.

“Give me that stick!” I ordered. He wouldn’t. He danced around me and the tetherball thing-y and bashed me and the pole repeatedly.

I’m not sure if he knocked me over or I sat down in defeat, crying. He bashed it into me a few more times, but then lost interest. Goliath dropped his weapon — well out of my reach — and sat down beside me. He put his paw on my lap, his head on my shoulder and nuzzled me. Chewed at my hair and my ear. Let me scratch his ears.

“You silly Goose.” I said pulling his ears and tail affectionately. Hugging him. “You’re gonna kill me one of these days.”

I knew then that I couldn’t kill myself, that night or any other. Nobody in their right mind would take my stupid dog.

*     *     *

I learned when I went back to work on the following Monday that the person I spoke with at the insurance company was wrong.  Mistaken.  My company’s coverage was considered continuing coverage and so my condition was insured.  I had my surgery and became healthy for the first time in about a decade.

Since the election, and especially since seeing the appointees to healthcare-related positions in the upcoming Trump Administration,  I have been haunted by the memory of the night I nearly ended my own life in a fit of desperation.  And while I think we can all agree that it was the silliest suicide plan ever devised, that misses the entire point.

And that point is that folks who lose their insurance or who are without insurance are often desperate.  And close to the end of their rope.  I certainly was.

How many other Americans have been in that position?  Hundreds?  Thousands?  Millions?  How many think, consider, and/or attempt suicide?  How many will in the future without Obamacare?  Without Medicare?  Without Medicaid?

The New England Journal of Medicine reported the following:

First, many suicidal acts — one third to four fifths of all suicide attempts, according to studies — are impulsive. Among people who made near-lethal suicide attempts, for example, 24% took less than 5 minutes between the decision to kill themselves and the actual attempt, and 70% took less than 1 hour.  (Miller and Hemenway, 2008)  (Emphasis added.)

I am not a traditional candidate for suicide, I don’t have the risk factors.  But I was, literally, at the end of my rope because of a combination of constantly dealing with a difficult disease, being broke because I was young and just starting out, and suddenly losing my insurance.  I would have had a huge financial burden I would never have been able to pay off.  All through the bad luck of bad health.  Simple bad luck.

When I hear the anti-Affordable Care Act folks preaching about how we need to get rid of Obamacare, I want to share the story of my desperation.  Because a flawed system is better than the old system, where pre-existing conditions — the very thing that makes insurance absolutely necessary — will be the very thing that made insurance coverage impossible.  There are problems with Obamacare.  But we need this program or we need a better program.  Going back to the old system is already unthinkable.  And the solutions I’ve seen from the GOP will not keep people like me with treatment options, out of medical bankruptcy, or away from desperate action.

Health insurance for many people makes the difference between life and death.  Literally and figuratively.

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Earth Day / Science / Judy

Earth Day.  The Science March (which I sadly can’t attend until Science gets around to curing my damn Crohn’s Disease).  My late sister Judy’s birthday.  So I’m reposting this.  Hey – Jude believed firmly in recycling!

***

She’s been gone now for 17 years, Jude.  Not a day has gone by since that I haven’t wanted to talk with her, laugh with her, or, alternatively because she was my sister, smack her.  There really isn’t a relationship like you have with a sister.  Even long after they are gone.

*****

Today, April 22, is Earth Day!  It’s the Anniversary of the very first Earth Day.  Here  is Walter Cronkite’s report on the first Earth Day, 1970:

It would also be my late sister Judy’s 65th birthday.

Whoever made the decision to turn Judy’s birthday into Earth Day chose wisely.  Judy was a born environmentalist and recycler.

On the first Earth Day, Judy was a new, very young mother who believed in saving the planet.  She was the first “environmentalist” I ever knew personally, and well, I thought she was nuts.  There was a recycling bin in her kitchen for as long as I can remember.  And this was back when recycling took effort.  She believed in gardens, not garbage, and she made life bloom wherever she was.

I’ve got kids,” she’d say.  “It’s their planet too!”  

But years later, Judy took recycling to a whole different level when she helped people recycle themselves.  In the 1990s, Jude, who was then living in Florida, began working with the Homeless, assisting at shelters.   Then she actively began trying to help homeless vets food, shelter and work — to enable them to jump-start their lives.

When she died in early 2000, the American Legion awarded her honorary membership for her services to homeless vets.  A homeless shelter was named in her  honor.  So she’s still doing good works, my sister is.  That would make her wildly happy.

Jude also gave me the Beatles.  So it is very appropriate that they wrote a song for her.

You see, the night the Beatles were on Ed Sullivan, it was MY turn to choose what we were going to watch.  And we were going to watch the second part of The Scarecrow of Romney Marsh starring Patrick McGoohan on the Wonderful Wide World of Disney.  My four (all older and MUCH cooler) siblings were furious with me.  But I was quite insistent.  You might even say that I threw a Class I temper tantrum over it, but I wouldn’t admit to that.  Hey, I was seven.  And it was my turn to choose.  Fair is fair, especially in a big family with only one TV.

Somehow, Judy talked me out of my turn.  She was always very persuasive.  Thanks Jude.

Hey Jude, Happy Earth Day-Birthday.

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Deja Boo-Hoo

Exactly five and a half years ago tonight, I was in a bit of a snit.  A tiff.  I was, in a word, miffed.

The result of those feelings was this blog.  And in fact, it was the reason* for the stupid name.  And my first post where I wrote:

Because I am fifty-four-and-a-half years old, the world is against me.   The world would be treating me just fine, thank you very much, if I were just six months older.  Read the news lately?  Some folks in Congress want to change Medicare — starting with me.  Starting with folks currently under 55.  Am I the only fifty-four-and-a-half-year-old who is seriously pissed off about this?

Well today, I’m no longer 54-1/2.  But I am not in  a snit.  A tiff.  And I’m no longer miffed.

Today I’m mad as hell.

Did you see that Donald of the small hands plans to put this guy in charge of Health and Human Services?  Congressman Tom Price (R (Suprise!)-GA).

tom-price

Photo Image Credit: Gage Skidmore

Folks are lining up in opposition to Price.  Not only will he piss me off by trying (and god help us, failing) to derail Medicare, but as the Chairman of the House Budget Committee, he is the author of the House bills to repeal Obamacare.  He is adamantly opposed to abortion in all cases.  He opposes including provisions in Medicaid to permit low income women to afford birth control.  He’s probably in favor of hangers.

Here is Democratic Senator Joe Donnelly’s comment opposing Price:

Tom Price has led the charge to privatize Medicare, and for this reason, I cannot support his nomination. I am ready to work with anyone who wants to improve access to quality health care for Hoosier families and seniors, but the nomination of Tom Price would put us on a direct path to end Medicare as we know it, which would raise health care costs and break a fundamental promise to seniors. I have fought to protect Medicare, and I will continue to oppose efforts to privatize Medicare or turn it into a voucher program.

I, personally, will do what I can.  Because I really do fear that before long, this is what Trumpcare will look like:

You know I got this from Father Kane at the Last of the Millenniums, don’t you?

*****

*Shortly after starting the blog with the stupid name, I realized that 54-1/2 was the average age my two late sisters reached.  I kept the name because, as the “sick” member of the family, it reminds me that really, every day is a gift.

I’ll continue to believe that.  Until, of course, I am an old Crohn’s patient whose Medicare has been taken away.  Then I will — literally — poop all over Congress and Donald Trump.

poop-4Google Image

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I’d Like To Buy The World A …

You’ve been asking for more poop from me.  Be careful what you wish for.

Because today is World Toilet Day!

This morning, I was inspired as shit by my friend Judy when she alerted me to the arrival of World Toilet Day (which I’d somehow forgotten?!?) and to Mr. Toilet himself.  And to this article.

Mr. Toilet is my hero.  Seriously.

Mr. Toilet was not born with that name.  Nope, Mr. Toilet is actually a rich, big-hearted man named Jack Sim who wants to do good in the world with the shitload of money he made in construction.  So, being flush with cash, Jack was inspired when he read a statement by his country’s (Singapore) then prime minister:

He said we should measure our graciousness according to the cleanliness of our public toilets.

As a travel lover, let me tell you that nothing, and I do mean nothing, says “welcome” like a clean, accessible toilet.   (As a Crohn’s patient, however, I stay home a lot.)

As I said last year on this auspicious occasion,

The point of World Toilet Day is actually pretty important.  People without access to hygienic facilities risk illness, many women are preyed upon and attacked as they seek out a place to go.  Diseases are transmitted, including infections, cholera, well, here’s a picture.

The "F-diagram" (feces, fingers, flies, fields, fluids, food), showing pathways of fecal-oral disease transmission. The vertical blue lines show barriers: toilets, safe water, hygiene and handwashing. Source WikipediaThe “F-diagram” (feces, fingers, flies, fields, fluids, food), showing pathways of fecal-oral disease transmission. The vertical blue lines show barriers: toilets, safe water, hygiene and handwashing.
Source Wikipedia

Mr. Toilet founded the World Toilet Organization (WTO) in 2001.  As Judy’s article says:

It’s a nonprofit coalition of leaders from more than 40 countries who try to come up with innovative solutions to tackle the world’s sanitation and water problems.

Together these loo lovers started the World Toilet College and SaniShop, initiatives that train entrepreneurs not only to make household toilets but also to maintain them and market them in the developing world. More than 4,000 people have been trained since 2005; the WTO says that up to 10,000 toilets were assembled in 2010 alone.

But it’s the way Mr. Toilet wants to go about increasing toilets that hit me where I live.

So first you have to make owning a toilet not just rational but aspirational. You have to make a toilet come with bragging rights, like a Louis Vuitton handbag.

Aspiration is important, as you can see even rich people have really nice toilets — they go for the highest level all the time. So this is the same as the poor people. They aspire to own products that have bragging rights, like a cellphone or television. The psychology is exactly the same.

He wants to first make owning and using a toilet funny, then sexy, and then normal.  He wants to remove the taboo on poo.  He wants people to laugh about, talk about and sing about toilets.

Here.  I’ll help.

Who knew that World Toilet Day would lead me to find the theme song for my life.

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Eleven/Eleven

Friday, 11/11/16 is a big day in my family.  It’s Adoption Day.  Our 25th.

You see, on November 11, 1991, my husband John and I adopted our son, Jacob.  He was 3-1/2 months old at the time.  Jacob was born in Chile, and John and I literally traveled to the end of the earth to turn a happy couple into a happier three-some.   It was on 11/11 when the Chilean court approved us and said, yes, Elyse and John, “You’re Parents!”

For years, I’ve told Jacob that I knew something was up with that number.  As a teenager, I was fixated on 11:11.  I got a clock radio for my 16th birthday – it was an old-fashioned “digital” clock, with numbers that literally flipped on a carousel.  Every night I waited until 11:11 before I could go to sleep, no matter how tired I was.  I’ve always told Jacob that, even though I didn’t know what it meant then, well, my heart obviously knew that 11:11 meant something.  Something big.

But I didn’t know just how big or just how wonderful.

Because 11/11 = Jacob.  Our son, my baby, our boy, our young man.  Our hilariously funny, nutty, astute guy.  Our pride and joy.   Jacob, you continue to delight, amuse and inspire us.  We love you, Peanut.

And because we all need to laugh, here’s one of Jacob’s favorite Elevens.  And we all need to laugh, don’t we?

*****

And Happy Veterans Day to any/all Veterans.

[This is a re-post.  Updated.  Because I’m busy.  Sheesh.]

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Filed under 2016, Family, History, Holidays, Humor, laughter, Love, Plagarizing myself