Zorro and I

Zorro

Zorro and I have a love-hate relationship. He is both a comfort and a curse who prevents and causes pain. He is my bodyguard, a confidant that keeps me on a straight path, and has become an indispensable colleague. We are rarely apart. Hell, I’m seen public with Zorro more than with K, and as much as I wish he would go away, I couldn’t function without him.

Who is this mystery figure? He’s my cane, of course.

First of all, let me give credit where credit is due. I’ve used a cane for years and never had the thought or desire to give hit a name. It’s a prop, for God’s sake, an inanimate object I purchased on-line. But after reading Sue’s recent post about the cane she has long-called Zelda, I thought writing about the relationship I have with my cane would make a good topic.

But before I could steal the idea, I had to give the cane a name. I christened it Zorro, partly in homage to Zelda, but also because I liked the symbolism. Zorro was a masked and sword-wielding vigilante who defended the poor and victimized against the forces of injustice. A cane is similar to a sword in the sense that it’s always in your hand, and you can wield it like one if you’re physically threatened. For someone who lives with a disability, it isn’t a stretch to feel victimized, or believe life has been unjust. I personally don’t, but the analogy fits. So Zorro it was!

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To be technically correct, Zorro is really Zorro III. All of my Zorro’s have been heavy duty Derby-style canes with a brass collar at the base of the handle. Each one was purchased from the Fashionable Canes web-site, which I would highly recommend. Zorro I, which is black, is my beater-cane now. It was sleek and shiny when it arrived, but has been scratched and dinged so many times that it looks like it has been through a war. I had to tape the handle together with electrical tape because it almost split in half when I impatiently used it like a hammer to break some ice off my pool cover this past winter. It’s simply too ugly to be seen outside the home.

I avoided buying a cane for as long as possible because I didn’t like the idea of drawing a lot of attention to myself in public, particularly for the wrong reasons.  In my mind, walking around with a cane would be like screaming “look at the gimp!” to the general populous. I didn’t relish the idea of people staring at the freak show, but in hindsight I should have known better. People are oblivious to what’s around them unless carnage, blood, death, nakedness or sex is involved, and me venturing in public with Zorro in hand was no exception. This made me realize I was once part of that that blissfully ignorance mass, because once I started taking Zorro with me every time I left the house, I saw a lot of people spanning a variety of ages wielding canes or walking sticks I hadn’t noticed previously.

Once I purchased Zorro, the first item on the agenda was to learn how to walk with him. Looking up  how to walk with a cane on the internet, I learned to place Zorro in the opposite hand of the affected limb. Rather than try to describe how it works, I’ll let the image below tell the story. This isn’t as natural as you’d think, and was awkward at first, but isn’t a difficult concept to grasp, and soon became an afterthought.

Cane walk

The next thing I discovered is that when you walk with a cane, you lose the functional use of an arm, which can make things you take for granted difficult. Try putting a cup of hot coffee in you right hand, put your left arm behind your back, and try to open a door. You can’t, so opening a door now required additional steps. I had to stop in front of the door, transfer Zorro to the crook of my left elbow, transfer the coffee cup to my suddenly free left hand, and open the door with my right. Once I was through the door, the process is reversed, and I am on my way. These might seem like insignificant details to able-bodied people, but for those of us who aren’t, it’s a pain in the ass, and there numerous scenarios like this where you learn to make these kinds of accommodations.

Is there anything I like about having Zorro with me? Well, I like the fact that he allows me to go out in public. I can get around inside the home okay with no assistance, but I walk very slowly, almost like an inch-worm without him, and often have to extend my right arm out to my side for balance. I’m sure it looks very odd. Be that as it may, I would never venture among a crowd of people without Zorro. That would be an accident waiting to happen.

I like the fact that if I’m sitting, I can use him as a prop to rest my arms, hands or chin upon. I like that when I am standing, I can lean on him so he can take the brunt of my weight instead of my leg. I like the fact that I can prevent elevator doors from prematurely closing by extending Zorro forward before the doors close shut, thus reopening them. I can extend him to pick up things from the floor, like shoes. He helps clear a path in a crowded room. All you need to do to get someone to move is lightly tap their foot or leg.  If you’re a germaphobe and don’t like touching things in public, Zorro can be used to both open and close doors, and press elevator buttons. I also like the fact that he helps me walk in a mostly straight line. I’m serious. I wobble from side to side when he’s not there to ground me.

I also like the fact that Zorro can serve as a bodyguard, if necessary. The shaft is very solid, and the derby handle is both blunt and pointed, so Zorro could inflict some considerable damage on bones, joints, and someone’s face if administered properly. You can also purchase a version of Zorro that has an actual sword attached to the handle and fits neatly inside the cane’s shaft. Zorro can also be used for carrying refreshments, as there are multiple versions that have inbedded flasks. Zorro can scratch those hard to reach places on your back, in addition to the bottom of your foot, as well. We’ve already established it can be used as a hammer.

What don’t I like about him? Other than the fact that I need him more than he needs me, I don’t like the fact that walking with him all the time causes my hip and lower back to ache. If Zorro isn’t sized properly (too long or short), he can cause horrific shoulder and elbow pain. The lower part of my hand can also feel bruised if I lean on him too hard.

Finding a resting place for place for him in the car where he doesn’t get in the way can be a challenge. Finding a place for him at a restaurant, sporting event, church, or anyplace for that matter, can be annoying.

What I hate most of all is that I am so dependent on Zorro. He helps keep me upright when I stumble, allows me to attend events I would otherwise avoid, prevents me severely injuring my knee and ankle, and generally allows me to live as normal a life as possible. Most importantly, he keeps me out of a wheelchair.

I guess I’m stuck with him.

The Silent Thief

Thief

Mute and nameless

The flare arrives

A ghost in the night

With evil intent

 

With stealth and malice

It silently leeches

Vitality and spirit

From the unsuspecting host

 

A sadistic specter

It delicately noshes

Never a glutton

Leaving room for more

 

Arrogant and smug

It leaves a calling card

Taunting the victim

Before slithering away

 

Unpredictable and unnerving

Its appetite is ravenous

Its return is ordained

To nibble once again

 

Leaving its target

Less whole than before

And filled with dread

At the inevitable outcome

The Games Health Insurers Play

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If dealing with a health issue isn’t bad enough, negotiating the maze of insurance red tape compounds the difficulty. Authorizations need to be obtained, the approved services must be used within the time frames given, and the billing has to match what was approved. Throw in where you stand with your annual deductible, what your co-insurance amounts are, whether you are in or out of network, and how many providers are involved in the process that will submit claims, and you can feel like a cop directing traffic at a congested intersection during rush hour.

Having said that, performing your due diligence sometimes does not provide the results you expect, and your are left scrambling in an attempt to make things right. To prove my point, I will share a personal experience that represents a textbook example of a case so blatantly egregious, that it illustrates why the health insurance industry has earned the public’s scorn. It also reinforces all their negative stereotypes you may have heard or assumed.

Three years or so ago, my progression started to accelerate, and my neurologist ordered three plasma transfers (apheresis) over a two week period to see if it would help. My results were dramatic. The symptoms that had climbed into my knee for the very first time, were alleviated and pushed back to where they were before the flare. We therefore decided to make the plasma transfers a part of my monthly routine.

So the authorization process began, which was a simple formality. After all, apheresis was long considered part of the MS therapy protocol, and I had just finished the three procedures Anthem had authorized a few weeks earlier.

My neurologist submitted the order, and two weeks later I received the written notification from Anthem’s Utilization Review department that the request had been approved, but I could see there was a problem. Only one procedure was approved, so a mistake had obviously been made in the authorization process because the approval was supposed to cover a twelve month span. I called the hospital to alert them, and received an apology and a promise to resubmit the request right away.

Several days later, I saw an insurance update flash across my work e-mail indicating that some insurer, I think it might have been Aetna, no longer considered Plasma Apheresis a medically necessary procedure for MS. Ten days after that, I received another notification from Anthem.

This letter informed me that my request for authorization was denied because the procedure was considered experimental and not medically necessary for my condition. Keep in mind that the letter I had received less than two weeks earlier had approved the procedure, stating it was medically necessary, among other things that this new letter similarly contradicted.

I laid the two documents side by side, one dated August 2nd and the other August 14th, and looked at them with disgust. They were polar opposites, and I instantly understood that Anthem had followed the other insurer’s lead.

Even for someone like me, who had worked in the healthcare revenue cycle/accounts receivable arena for decades, this represented a WTF moment. I had witnessed stuff like this happening to others in my career, but I was the victim now, and it did not feel good. The irony was laughable, but I was still royally pissed. I also knew Anthem wasn’t playing games. This was truly their decision, all because another insurer took that position, and it gave them political and ethical cover.

I appealed indirectly with my employer, which has a self-funded plan with Anthem and covers thousands of employees, but that never bore fruit. If I didn’t have the benefit of my work experiences, my next step probably would have been to call and complain, then have my neurologist appeal the decision, but I’m sure the answer still would have been tough-titty, and I’d be left high and dry.

However, I recalled that the State of Connecticut has something called the Office of the Healthcare Advocate whose mission is to help people in the state either find healthcare or help them with issues relating to their coverage. I knew this because I had their chief speak on two occasions at programs of a trade group I was president of at the time.

I believed my situation was a slam-dunk in terms of getting the decision reversed. After all, I had two written documents, issued within a two week span, the first of which said the request was appropriate, followed by the second that said it wasn’t. I wanted Anthem to explain and justify the the rationale of their decision, but needed the political muscle to force that issue. The Advocate agreed and referred me to one of their agents, whom I called. While this individual was professional enough to not laugh out loud when I explained what happened, I could sense them rolling their eyes and shaking their heads on the other end of the phone. At the agent’s request I sent him a summary of the events and copies of both letters, then sat back and let him do his job.

Wouldn’t you know it? I received a letter from Anthem approving twelve procedures over a span of twelve months, but it took two months after that initial call to receive it. I never did get an explanation for why they denied the services in the first place, or an apology, but honestly did not expect one. I was just happy that this bullshit was over, and I could receive the treatments.

This reversal did not represent a change in their policy, however. They simply made made an exception in my case. For all I knew, anyone requesting similar services from them would get the same denial I received. But if I remember correctly Anthem reversed this policy a year or two later, and I haven’t had an issue getting the services authorized since.

A health insurer’s first priority is to make money, the second is to pay claims. Never question that for a second. The moral of this story therefore is that you have to be extremely diligent when it comes to health insurance coverage. You must dot all your I’s and cross all your T’s, and even then things still can go wrong.

Services that were approved can be still be denied, or paid incorrectly after you’ve done all the right things. Claims can be paid and the payment can be withdrawn months or even years later.

You have to be an expert at your policy’s coverage terms, and your avenues of recourse if you have an issue you think you shouldn’t, because it could cost you money or a denial of services if your don’t.

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I can see how you might think I’m being overly dramatic. It is true that I’ve been in this industry for a long time, have had many tussles with all the major insurers over coverage, denials and how claims are (or aren’t) paid. I admit my perspective is biased, but that biased has been well-deserved. Nonetheless, I will leave you with this anecdote.

A number of years ago, we had someone talk about about insurance denials, and strategies to prevent, combat and pursue them, at a program for the trade group I mentioned earlier. Before he started his own company designed to help providers set up a denial mitigation process, he worked for one of the major insurers. I don’t remember what his exact title was at that company, but it was a Director level position of the regional unit that processed their medical claims. During the presentation, he casually mentioned that his division had denial quotas. In other words, part of his unit’s success was determined by the percentage and/or dollar amount of the claims received that were denied.

When the presentation was over, I walked up to him during a break to chat, and asked him what they did if their projections showed their denial target wasn’t going to met. He simply smiled, raised his eyebrows and shrugged his shoulders. While he never spoke these words, the message was clear: claims were denied inappropriately at some point in time, whether it be each month, each quarter or fiscal year end, so the goal would be achieved.

That makes perfect sense to me, because the truth is many hospitals send out tens of thousands of bills a month, and it is impossible to keep track of what happens with every single one. Those who are on the ball have a unit or software in place to catch and escalate inappropriate denials so they don’t slip through the cracks, but not everyone is on the ball, and while it should not happen, sometimes the patient winds up with the bill.

Keep in mind as well that while these scenarios sound common place, they occur only a small percentage of the time. When you submit hundreds of thousands of claims each year however, a small percentage seems like a lot. Nonetheless, as small as this percentage might be compared to the total, you don’t want to be the unlucky person who is sucked into this dark underbelly of the claim adjudication process.

Everyone is entitled to have access to the treatment that is governed by the terms and conditions of their policy, and not pay a penny more than required. You therefore need to pay attention and be diligent. Read your insurance explanation of benefits (EOBs). Read all the communications and bills you receive. Understand your policy and its coverage. Don’t assume or ignore anything.

Don’t be a pawn in the game of healthcare roulette.

 

 

Thoughts On Pharmacology and The Search For A Cure

Cash

In the ten years since I was diagnosed, I have tried eight different medications to manage my symptoms and progression, and never gave much it much thought or questioned my choices until the last few weeks. What changed? I’ve noticed a number of posts from various bloggers about their experiences with the drugs they take for MS and other chronic conditions, and two truths have become painfully obvious.

The first is that pharmaceuticals are the primary, and in some cases, the only option provided to us. The second is that trying these drugs is similar to purchasing a lottery ticket, in the hope of hitting the jackpot, only to be left with a hangover.

I’m not anti-drug, just anti Big-Pharma. After all, doesn’t it seem ludicrous that the entire idea of legalizing marijuana, medical or otherwise, still meets a ton of resistance as it’s labeled as a gateway drug, yet scripts of opiates are dispensed like candy, creating an addictive culture that turns to heroin when the supply is cut off, and the outrage is muted? Don’t get me started.

As I was saying, I’m not anti-drug, and there have been a handful that have helped me, but let’s be honest. Even with the drugs the FDA has approved, we’re still participating in a never-ending clinical trial, serving as lab rats or human petri dishes for Big-Pharma and the medical community in general.

Is that a harsh assessment? Maybe, but we willingly take stuff we know may not do a damn thing, and make us feel like shit in the process, but don’t think twice if that occurs, and gladly move onto the next option. Maybe that option will be better, but if not we keep trying other things until we find something that works even a little. After all, what’s the alternative?

I know that the stuff that I’ve been putting into my body all these years isn’t healthy. The chemo I took for over eight years isn’t good for the liver, and necessitated monthly blood tests to ensure my liver enzymes weren’t all fucked up. I know Ocrevus isn’t much better. So yes, I do think about what the long term health consequences of what I’m doing might be, but that does not get in the way of continuing the path I am on or trying something new. It’s a safe bet I’m not the only person who feels this way.

That may sound desperate to someone not living this life, and I know holistic options exist, diet for one, that might be worth pursuing. But I’m brainwashed like everyone else in thinking that pharmacology is the best option. Either that or I’m following the gospel of my neurologist without reservations. I trust him and think, perhaps foolishly, that if the drugs were doing more harm than good he’d tell me.

Having said that, I believe that pharmacology is not going to provide the ultimate solution if a “cure” is ever discovered. I’m of the opinion that if a cure is out there, stem cells will provide the key. After all, if you’re going to try to regenerate myelin, I doubt a pill is going to do it. Doesn’t it make  sense that something organic will create something new and better? Be that as it may, I’m not holding my breath hoping that a cure will either be found in my lifetime, or happen before I’m primed for the Dirt Nap.

As far as brain lesions are concerned, I don’t think they will ever crack that nut. That organ is the final frontier in the medical community, and we are light years away from truly understanding how to treat it.

I suspect all of us ultimately reach a point where we’ll get off the medical treadmill of procedures, injections, infusions, and pills. I know the day will come where I’ll jump off and focus on rest, diet and more holistic approaches. But I will first have to conclude the results no longer justify the effort, and am tired of going to hospitals, tired of getting poked, prodded and stuck, and tired of the expense.

Reading the posts I mentioned also made me reflect on the economics surrounding finding a cure for anything. More specifically, there are millions being poured into research through grants and donations to find the elusive cure for various chronic and deadly diseases, cancer and MS to name two,  but don’t you sometimes think it isn’t in a lot of people’s best interest to actually find one?

If Big Pharma found the answer, which I doubt will happen but let’s stay on that thread, then that premise doesn’t ring true. I mean, can you imagine what they would charge for the magic pill or shot that prevents cancer or cures MS? They could name their price and nobody would flinch.

But what if, as I believe, the answers do not lie with pharmacology. What would happen to the big organizations that champion the chase for a cure? How much would they lose in funding and donations?

My intent is not to imply that those who run these groups are only in it for the money, but let’s be realistic. Isn’t it in their best financial interests to keep chasing that cure than to actually discover one? After all, a significant percentage of revenue goes to overhead for some of these organizations. What happens if the money runs out or the flow is reduced to a trickle? Maybe I’m in a cynical mood tonight. I’d like to think it wouldn’t matter, but isn’t that naive?

It’s an interesting discussion, but probably pointless. After all, the medical community would actually have to find something that works, and in the immortal words of the neurologist I saw at Johns Hopkins during the early stages of my MS journey, when has medicine cured anything?

 

The Liebster Award

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Well surprise, surprise. While scrolling through the various blogs I follow, I spied one from Jay-Lin, who has a unique take on the world in addition to writing wonderful poetry, and noticed that she nominated me for something called the Liebster Award.

I’ve often thought of this type of recognition as part compliment and part chain letter, but I appreciate the compliment and the timeliness of her nomination. You see, the well has running dry on blog topics lately, so I will keep this line moving.  And thank you, Jay-Lin.

Here are the six rules that are part of the drill:

  1. Thank the blogger who nominated you (done).
  2. Share eleven facts about yourself.
  3. Answer the eleven questions the blogger gave you
  4. Nominate eleven bloggers who deserve the award
  5. Create eleven original questions for the nominees to answer
  6. Let them know they have been nominated

So here are eleven facts about me:

Was diagnosed with MS in 2008. It was completely unexpected, came out of nowhere, and was part of the motivation to start my blog.

Cultivating a following to help sell prospective publishers to take on my novel was the other motivation.

I am an avid sports fan of most Boston teams, with the exception of football (go Packers!) and UConn Husky basketball.

I am socially liberal but fiscally conservative

I don’t make friends easily, but the ones I have tend to be friends for life.

I am extremely loyal and protective towards family and those I care for

I’m considered a good guy, don’t have a mean bone in my body, and it takes a lot to get me mad. However, there is a line in the sand for most things, and sometimes I don’t know what they are until a person crosses it. Once that line is crossed, well, let’s just say there is no going back.

I believe marijuana should be legalized.

I believe there should some form of universal healthcare in this country, not the watered down political football we have now.

I am the second best writer in the family.

I love to travel, but travel doesn’t love me anymore.

 

Here are the questions I’ve been asked to answer (questions bolded):

If you could step into any book, which book would it be? I love Stephen King but would not want to be in any of his books. Same for the crime/murder mystery type books. But I do enjoy the idea of space travel and exploration, so in that spirit I would say Thomas Wolfe’s classic, The Right Stuff

How do you like to wake up in the morning? Alive and pain free.

Besides writing, what would be your ideal job? Being the radio voice of the Boston Red Sox.

What is your sense of humor like? Quick, sharp, self-depreciating and naughty.

Would you prefer to live in the woods or by the ocean?  The ocean by a landslide.

Sunshine or thunderstorms? It depends on my mood.

If you could use one mode of transportation to get everywhere, what would that be? It does not exist yet – I’d love to get from Point A to Point B using the Star Trek Transporter.

What is your favorite flavor of ice cream? All of them, but I had to pick one it would probably be boring vanilla.

Tent or Mansion? Seeing I have a hard time getting up from the ground or any other place for that matter, definitely mansion. The truth is I’ve never been fond of roughing it. As my wife is fond of saying, my idea of roughing it is a hotel without room service.

If you were the monster that lived under the bed, what type of monster would you be? The kind that would eat anyone who wanted to hurt you.

What was the name of your first stuffed animal? Stinky, but I don’t know if that was actually what it was first called. It is, however, the name it was given after I threw up all over it in a bout of car-sickness when I was very young.

Here are my eleven questions:

Do you prefer boxers, briefs or going commando? And for the ladies, what is your preference for the men in your life?

If you could sit down to talk with one non-religious person, dead or alive, who would that be and why?

What is your biggest fear?

What is the most important quality you need in a friend?

If you could change one thing in your life, what would it be?

Who is your favorite author?

Small Town or Big City?

Salt or sugar?

What is your favorite thing to do when you have some alone time?

The Beatles or The Rolling Stones?

What is the one thing you would like to see happen before you die?

 

Now for the lucky eleven who get to answer these questions. Let me start by saying there are a handful of bloggers who weren’t eligible because they were previously nominated.

Secondly, if you see your name, you are under no obligation to keep the chain going. Consider it my way of saying I like your stuff and want as many people as possible to see why.

I Tripped Over a Stone

KC’s Place

Tom Being Tom

Superman Can’t Find a Phone

MS Grace Fullnot

Walt’s Page

Stories From The Edge of Blindness

Blogging with Bojana

The Lonely Author

DGGYST

Invisibly Me

 

 

 

 

 

A Career’s Sunset

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I’m just sitting here watching the wheels go round and round                                            I really love to watch them roll                                                                                                        No longer on the merry go round                                                                                                     I just had to let it go                                                                                                                             John Lennon – Watching the Wheels

“What do you want to be when you grow up?” Isn’t that the age-old question kids always get asked? My dream was to be a professional baseball player. Unfortunately talent, specifically lack thereof, got in the way. So that dream, to quote a favorite line in The Shawshank Redemption, vanished like a fart in the wind.

I didn’t know what I was going to do or the industry I’d do it in. Didn’t have a clue. My career chose me rather than the other way around. I did know one thing early on however. I wanted to be a boss: the top dog, the big Kahuna, THE MAN.

Why? Ego, status and money I believed would come with the territory. I wanted to be able to afford certain things I thought were important, and I didn’t want to have to deal with anyone’s crap (little did I know). I wanted a certain amount of independence at work, and I wanted the authority and accountability. I liked the idea of being in the spotlight, and of being a leader.

It was a fast track early on. Following graduation from college I went from worker bee to boss in a span of three years. How I got there is irrelevant, but if you must know I exaggerated (lied) about my qualifications. The employer in question wanted someone cheap, motivated and who had potential. I was in my early 20s and wanted the title. So, to borrow a line from Bob Seger, I used them, they used me, and neither one cared.

In the ensuing years I spent various times on the provider, consultant and vendor side of the healthcare equation. There was always one constant: I was in charge.  I enjoyed the fast pace, the constant grind of being as good as your last month/quarter/fiscal year end. I enjoyed the interaction with other department heads and my peer group, and I enjoyed being in a field that was extremely challenging.

That all changed ten years ago when I stopped being a boss and became a trusted and respected professional and jack of all trades. Shortly thereafter, MS reared it’s ugly head. More on that later.

“Do you miss it?” That is a question I got asked a lot, and if you asked me when I first made the change, my answer would have been “not really.” That doesn’t sound believable, does it?

In truth it wasn’t believable. At the time, I didn’t think there would be an adjustment period, which in retrospect was foolish. Not only did it occur, its duration surprised me.

From a financial aspect I took a step back. I generally don’t worry about much in life, and don’t have a lot of hot buttons that keep me up at night. The one hot button I do have is the fear of being broke. So this unknown did pluck my nerves.

There was also a period of adjustment from a sense of self-perspective.  It took a while for me to wrap my head around the fact that I was a complimentary player instead of the big cheese. I missed being involved with everything, and having a say in how things would work. I was on the outside looking in, and wasn’t sure of when or how to offer an opinion, or how it would be received. This all felt very strange because I wasn’t used to being unsure. I missed the action.

The pace of my work day was much slower. I controlled the events of the day rather than them controlling me. I found myself getting through things so quickly that by day’s end my work would be done more often than not. It felt like I was stealing. I had become so accustomed to being further behind at the end of each day, that being caught up felt foreign and wrong. It felt like I wasn’t working hard enough or didn’t have enough to do. Slowly but surely, I became acclimated to this new reality. Soon thereafter it occurred to me that this wasn’t so bad after all.

The truth is that I became an adrenaline junkie. The fast pace and daily whirlwind had become so ingrained that I knew nothing else. I was one of those gerbils you see in their cage, running on that wire wheel. Their little legs are churning, the wheel is spinning fast, and they aren’t going anywhere. I was like an addict going through a voluntary detoxification program. Now I am fully cleansed, am comfortable in my new skin, and have been for years

It’s said that timing is everything in life, and the timing of this change was perfect. In fairness, I did not make this move voluntarily. I was in a work situation that was crumbling around me and extracted from it by a mentor. The stress at the time was horrible, because I was dealing with things at home as well.

While I was relieved to be out of that cauldron, the truth is my ego was bruised. It was the first time in my career that I found myself in an impossible situation that was not (mostly) of my making, and felt like a scapegoat.  In hindsight, this change may have saved my long-term health. I believe the combined stress of the months leading up to that event made my body go tilt, because shortly after the switch the treadmill incident occurred, and everything changed.

I now understand that stress is probably the biggest trigger for my symptoms, and over ninety percent of my work-related stress had instantly vanished. I was lucky to have someone watching out for me. Quite frankly, I don’t know how anyone with something like MS can thrive in any position of responsibility. Your health is unpredictable, which makes you unreliable, and therefore a liability. And as far as the stress is concerned, why would anyone want to subject themselves to that when everyday tasks are a chore.

I have the best of both worlds now.  I work with and for people I like personally and respect professionally. I like what I do and always enjoy going to work. I’m able to focus on the things I enjoyed the most in my previous roles, and the slower pace has allowed me to develop some things I could never devote the time to. I own the work but not the burden. While I am not as operationally involved as I used to be, I still have the knowledge should the need arise, and know that I could slip back into that role if it was needed in a pinch to fill a temporary gap. Besides, I’m involved enough that whatever itch I have gets sufficiently scratched.

When you start carving a career, you’re full of energy, optimism and are extremely motivated. A certain amount of naïveté also helps. The downside is you occasionally step on avoidable land mines because you don’t see them. Maybe you don’t appreciate your staff as much or treat them as nicely as you will later because you don’t yet recognize it’s more about them then you. You’re also more selfish about your career, and even though you may have a spouse and young kids, the work often takes priority.

Somewhere in your career path the combination of age and experience hit that perfect apex, where all the youthful assets remain but you also have the experience that allows you to avoid the land mines, to push the right buttons regarding staff and operations, and to navigate your organization’s political shark tank without shedding any blood and creating a feeding frenzy.

However, at some point we also begin to traverse the downhill side of that curve. We know our jobs like the back of our hands and enjoy the science and the art of our work more than ever, but become weary of all the crap that comes with it. Maybe it’s the constant grind and stress. Maybe you don’t want to spend the day traveling 100 MPH anymore.  Maybe it’s dealing with the strain of being as good as your last month/quarter/fiscal year. Perhaps it’s the people stuff that wears on you, and you feel more like a kindergarten teacher. Any of you that have to address parking issues or police a dress code know what I mean.

As you grow in your career, you also learn that being a boss isn’t the same as being the boss. Unless you own the company you’re somewhere in the middle, and remember, if you’re not the lead dog, the view never changes. After a while, taking orders from above and listening to the yapping from below can lose its appeal. This may not be an issue early in your career, but as you reach the next level, more demands are made of you. While you thought you had control when you were young and didn’t know any better (or care), you realize the power and control you gain with each step up the ladder may not be enough to meet the demands placed on you. And as far as demands are concerned, check out this little ditty.

The good part about getting older is that you are better equipped from a knowledge base to be creative and to adapt. The negative is that the mental energy and stamina is harder to generate. You have to start manufacturing it more than you did earlier in your career.

I wouldn’t trade my time in the hot seat for anything. It helped give me an invaluable skill set in an industry that requires a lot of tools to be successful. Admittedly, my transition was not entirely part of a grand design, and the change was not as seamless as I anticipated, but I am perfectly content being a complimentary player. Quite frankly, at this stage of my career I am better suited for it. Physically, there is no way in the world my body could handle the strain. I don’t miss being a boss one iota. Is that maturity, or common sense?

Taking it down a notch may not be everyone’s cup of tea for a variety of reasons, but I would not be surprised if many people who have been where I was have at least given it some thought.

I am in the sunset of my career now, and retirement is on the distant horizon. Part of me would like to bite the bullet and do it now. I’d love to be able to kick back, devote my full time to writing, getting the novel published, and begin novel number two in earnest before the MS invades other parts of my anatomy.  I’ve been fortunate over the last ten years that it hasn’t progressed beyond the one limb. Is it realistic to expect the status quo to continue for the next ten years?

The reality is I need to work another six or seven years so I can get the new homestead built, replenish the nest egg, and get Shodan to fly. There is also a minor detail called health insurance. Mine is pretty good, and I want to hang onto it for as long as I can.

Hopefully the MS doesn’t have other plans.

The Healthcare Conundrum

profits

In 2017, the Kaiser Family Foundation reported that more than a quarter of U.S adults, including those with medical insurance, struggled to pay their medical bills. Medical debt, they continued, was the number one source of personal bankruptcy filings, and in 2014, an estimated 40% of Americans racked up significant medical-related debt.

I’ve worked in healthcare for over thirty years, primarily for hospitals, in the revenue cycle arena, which in general terms are the areas that schedule, admit/register, code, bill and collect the cash for the organization. I am therefore intimately familiar with what goes into getting services paid correctly. Even though I was generally aware of what Kaiser reported, I never gave it much thought until MS came along.

Now, as a person who suffers from a chronic medical condition that will get worse over time and who requires more medical services than the average person, I can’t predict how this condition will impact my ability to work or earn between now and the time I would like to retire. So the inconvenient facts Kaiser points out are personally frightening.

In a country as wealthy and technologically advanced as ours, how can this occur, and why does the World Health Organization (WHO) rank our healthcare system 37th world-wide? I’m certainly not an expert, but do have an opinion.

The simple answer to a very complex problem, is that our system is profit-based, and the players in the big healthcare sandbox don’t play nice together. Everyone is trying to make money, keep what they have, and to get away with spending as little as possible while making as big a profit as they can.

Medical students graduate with massive debts, work their asses off at ungodly hours to matriculate to a point where they can enter a practice, start digging out, and hopefully earn a very comfortable living while pursuing a career they are passionate about.

Hospitals run sophisticated 24-7 operations that are labor and equipment intensive, in a culture where most not only think that access to healthcare is a constitutional right, they also believe they shouldn’t have to pay much for it. The equipment I’m talking about, like MRIs, aren’t cheap. Neither are computer systems. In order to gain efficiencies, large healthcare systems are being created, which results in more of a corporate culture, led by individuals who often make seven figures.

State and federal governments run and administer the Medicaid and Medicare programs that cover more than fifty percent of the patients treated at most providers, but don’t come close to covering their costs. Their resources are dwindling, so they continually force providers to accept less and less.

Big pharma meanwhile charges more than the cost of a luxury car for many of their drugs that get dispensed at healthcare facilities, but, in my opinion, escape the vitriol heaped on most hospitals.

Then you have the major insurance companies, who have stockholders they need to keep happy and are bottom-line driven. Their idea of the ideal policy-holder is someone who is young, healthy, and never files a claim. They loved someone like me when I was between the ages of twenty one and forty-nine. In the last ten years, however, I’ve narrowed the gap between the revenue they earned from my policy premiums versus what they paid during my healthy years. If administered truth serum, I am sure they’d admit that they would drop people like me if they could.

Everyone has different missions and agendas.

I can get into a lot of minutia regarding how charges are established, try to detail the maze of what has to occur in order to get a service approved, and explain all the things that can and do go wrong during the billing process. In fact, I’ve already attempted this three different times, but what emerged was something so convoluted your head would hurt if you read it. So I will try to keep it simple and basic.

Assuming all the necessary authorizations and approvals have been received, the provider submits a bill for “w,”the payer approves “x,”pays “y” to the provider, and the patient gets stuck with “z.” The actual payment is influenced by things like whether the provider is in network (where more is approved/paid) whether deductibles have been met, the percentage of approved charges the patient is responsible for, and if the patient’s total annual out-of-pocket maximum has been met.

If you are hospitalized, you can get separate bills from the hospital, your doctor, the anesthesiologist, the radiologist, and maybe even an ambulance company, all of whom submit their own claims to your insurance, who will process and pay them in different ways. There will be outstanding balances after each of them does their thing, and if you have a second insurance, your primary plan will either submit the balance to them in the form of a claim on your behalf, or you’ll have to do it yourself. Either way, you pay the freight of whatever remains.

No insurance program pays the same thing for the same service. As I previously mentioned, Medicaid and Medicare programs do not cover cost, so providers are forced to recoup those losses from private insurers in order to stay afloat. This is what is meant by cost-shifting. Providers have to figure out the complex calculus of projecting revenue by payer, service line and volume of patients, combined with what they anticipate will be written off to bad debt or charity to achieve a certain bottom line. This may not be rocket science, but it is just as hard.

Now, allow me to share a personal experience that illustrates the frustrations of many when it comes to healthcare billing and what is owed.

I’ve been getting apheresis and infusion treatments once a month for years, and knew they would be expensive before I started. When I saw what was being billed, I wasn’t surprised, and it did not appear excessive based on what I’ve witnessed during my career, so didn’t think twice about it.

My drug of choice changed from Cytoxan to Ocrevus last year, but the first administration of this dose was split over a two week period. The bills for those infusions were more than what I was used to seeing, but not enough for me to take notice. Last month, however, was the first time I received the full dose in a single infusion, in addition to the apheresis, and I don’t have to look at an itemized bill to know that the reason the total charges for this service was almost three times more than previous treatments was because of that drug. Anthem covered the service, but approved less than ten percent of the total charge. The difference, which was six figures, was written off. If I had no insurance, I would have been responsible for the entire thing. Then again, if I didn’t have insurance, the treatments would not be an option.

Meanwhile, tucked between that breakdown on the Anthem Explanation of Benefits (EOB) was a $2,285 charge for the physician part of that service. That charge was not unusual because I’ve seen it before, but maybe it pissed me off this time because of the other bloated charge. Why? Because the physicians that provide the service being charged don’t do anything.

Here’s what happens every time I get treated:  A young doc, typically a resident, or fellow, stops by once I’m hooked up, asks me how I feel, asks if there have been any changes or if I have fallen since the last time I was there, listens to my heart and lungs, feels my ankles, and asks me if I have any questions, the answers for which are “the same,” “no,” “no” and “no.” Many of them appear shy and unsure of themselves. Their perceived insecurity gives the impression they would rather be doing anything other than speaking with me, and that they are doing this only because they have to. I am admittedly painting with a broad brush here because a handful of them have been engaging, articulate and ooze confidence, but those have been in the distinct minority.

So I was billed almost five hundred dollars a minute for a physician who didn’t do anything, didn’t add any value to my experience, and was there purely for protocol purposes. I complained, but knew I was chasing windmills.

Anthem approved about forty percent of that charge, so my total out of pocket hit for these two bills was about $1,100, and I’m fortunate. Believe it or not, I do have very good health insurance. I also know that the out of pocket expenses for my policy, outside of co-pay and prescription drugs, are capped at a certain number each year, and I budget accordingly. Not everyone has the same luxury.

Is there a solution? Probably, but doubt I will ever see it in my lifetime unless the country goes bankrupt. Too much money is involved, healthcare employs a lot of people, and lobbyists swarm Capitol Hill to protect their vested interests. It’s a multi-billion dollar industry. Why else would providers and insurers fight like hell over fractions of percentages in claim denials and during contract negotiations?

Besides, any rational and intelligent discussion regarding healthcare expenses have to involve limiting, otherwise know known as rationing, healthcare service, and nobody has the political stones to go there. Remember the “death squads” that were frequently mentioned during the politically-charged debate about universal healthcare in 2009?

What I can see occurring is a two-tiered system. One will involve a single payer concept that oversees governmental-run organizations, operated in a manner similar to the Canadian system, where access is not immediate and treatment could be denied based on person’s age and prognosis. The financial burden would be a fraction of what currently exists, however, which would go a long way to reducing personal bankruptcies and solving the dilemma of healthcare consuming an ever-growing percentage the federal budget. Maybe the doctors and clinicians who work at these institutions will do so as a means of paying off their massive debts.

The other tier will encompass a provider network that is brazenly profit driven, where anyone with means and private insurance can get what they want, whenever they want it, but at a cost. Everything is known and agreed to in advance. These will become your proverbial five-star Marriot/Hilton type facilities, while the former will be more like your Motel 6’s. I’m being sarcastic, of course, but there is more than a grain of truth in that premise.

Meanwhile, small community hospitals will continue to die a slow death or get gobbled up by larger systems. Healthcare in general will become more expensive, corporate and top-heavy.  Consumers will have fewer choices and we’ll continue to meander along our current path.

I hope I’m wrong.