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

trophy

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

sunset

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.

The P Word

rose

There is a word that anyone who suffers from MS dreads to hear, and that word is  progression.

The primary definition of progression is “the process of developing or moving gradually towards a more advanced state.” Normally that’s a good thing, but not in our case, because if something is progressing in the MS world, it means our bodies are breaking down, and we’re basically screwed.

I’m not familiar with the relapsing-remitting world because I never lived in it. Mine was progressive right from the start, although I didn’t realize it after the initial treadmill incident. It took a period of time and one particularly shocking episode to realize that what I had was not only here to stay, but was permanently entrenched and getting worse.

Over time, I began to define progression in my own terms, and discovered that while doing whatever I could to stop the progression was a noble quest, the best I could do in reality was retard the speed in which the disease advanced. I also learned by reading what I could about MS, including the personal experiences shared on various blogs and message boards, that like the disease itself, progression is different for everyone.

In my case, it has stayed in one place. In the beginning, my progression moved at a snail’s pace, slow but consistent. The best way I can describe the way it moved within my leg is to compare it to the old mercury thermometers, like this one.

thermometer-temperature-fever-flu

For those of you who aren’t familiar with these, the mercury inside the glass enclosure rises with your temperature. Using that analogy, the mercury started in my foot and slowly moved north, as the disease doggedly consumed my right leg. Once it got to my calf, the pace of my progression changed.

From that point on, when the mercury moved north, it occurred in quick, sudden bursts. I would literally go months where I thought the progression had finally stopped when, out of the blue, it jolted upwards, moving from mid-calf to just below the knee. Thus began the period where I had these immediate and noticeable changes. The odd thing is, the progression would wobble. The weakness would move north and make things worse for a few days/weeks, then move back down, improving to where it was before the sudden change. Like a yo-yo, this would occur over a period of time before the progression finally settled on the new high level mark when it first appeared. It has progressed in this manner ever since, the most recent episode occurring several months ago when it moved to just above my knee, forever complicating my ability to walk, and every other activity that requires the use of my legs.

Is this true progression? I certainly think so, but I think my neurologist sees things a little differently. While it has progressed within the limb, which isn’t trivial, it remains confined to that limb and has not spread elsewhere. His main concern, besides doing what we can so I don’t lose complete use of the leg, is to prevent the progression from branching to my arms and hands, which would signify a significant and troublesome change. He’s told me on more than one occasion that is one of his priorities, and has actually gone as far to predict what limb would be affected next.

The yo-yo type characteristic of the way my symptoms have progressed keeps me guessing. For instance, I’m so in-tune with my body now that if I feel the slightest change, I’ll wonder if it has something to do with the MS, and if this is the start of something bad.

Here’s a perfect example. I’m a good typist. I can lay down a lot of words from the keyboard in a very short period of time, and have always had exceptional accuracy. Over the last six months however, my accuracy has gone to hell. Is there a reason for that? Does it have anything to do with the MS? Is this the beginning of it invading my hands, or am I just becoming sloppy?

This line of thinking occurs every single time there seems to be a new development. I wonder if I might be making something out of nothing, and if I dismiss whatever it is as inconsequential, I’ll invariably being thinking if that is a smart thing to do. I never call the neurologist in these situations because I don’t want to appear neurotic.

Sometimes I wish that if I’m going to realize my worst fears about living in a world of pain beyond my comprehension, becoming wheelchair bound, and completely dependent upon others, that it happen suddenly and savagely so there is no doubt. It’s the doubt and second-guessing that drives me nuts, you see. It doesn’t take long however for me to realize I am a lot better off than most (at least I think I am), and that I’m being an idiot because wishing for that to occur is insane. This realization always settles the nerves, which allows me to start compartmentalizing again, and resume my merry voyage on the SS Denial.

Hopefully it will be a long trip. It’s lasted almost eleven years so far.

 

The Day Death Was Near

Wave

This is a story about allowing your mind to write checks your body can’t cash.

I don’t think I’ve even shared this with K, primarily because I know what she would say, and I’ve done enough self-flagellation. The long and short of it is that when you have any kind of disability, there are things you know you probably can’t do anymore, and it’s never smart to test that theory. I wasn’t smart one summer afternoon almost four years ago, and my consequence could easily have been tragic.

We were vacationing at Martha’s Vineyard, and Shodan and I were at Lucy Vincent beach while K and her girlfriend were out and about. The surf was rough, as it had been during our entire stay. There is a color coded display as you walk on the beach that describes the water conditions and what they represent in terms of surf, undertow and things of that nature. If the color of the day is red, the beach is closed. If it happens to turn red during the day, lifeguards do their best to get everyone out of the water.

On this particular day, about half-way into our trip, the color on display was one or two levels below the “do not go in” threshold. In fact, it had been that color for our entire stay. I don’t remember the exact color, but you get the point. Any fool could see that the waves were impressive, and the sound they made crashing into the beach was loud. The conditions were perfect for anyone who was into body surfing or had a boogie board. If I remember correctly, there had been a handful of people on surfboards during the previous days.

Shodan had been living in the water and was having a blast. He’d periodically call out to me to join him, but Smart Steve had resisted the call. He had ventured into ankle-deep water on a handful of occasions, and needed the cane to stay upright because the undertow was strong and the waves would occasionally crash on his legs. Smart Steve knew that if he was having a hard time in ankle deep water, going out any further would be a fools errand, particularly when he considered the fact that the tide was high and a handful of very large rocks scattered about the ocean floor, easily visible during low tide, were currently underwater.

But Foolish Steve wanted in. He hadn’t frolicked with his son all week, and knew that once he got out to about chest level, and beyond the crashing waves, the buoyancy of the water would mitigate his symptoms. Once in, he could maneuver around easily in the zero-gravity like environment, bob like a cork on the water, and enjoy the experience. The more he thought about it, the more sense it made, so Foolish Steve plotted his strategy.

Limping back to his blanket, and almost stumbling as his foot caught in the fine sand, he ditched his cane, trudged out to the surf, and waded in. Spying a large oncoming wave, he half-dove half-fell directly into it, and swam out to sea. Feeling his body rise and fall with the incoming surf, he stopped shortly thereafter, when it became obvious he had cleared the worst of the waves. Standing up in neck deep water, he surveyed the scene, saw he was well beyond the danger zone, moved closer to the shore until the water was chest deep, and stood upright.

So there I was, basking in the bright sunlight, enjoying the feel of the cool water on a warm summer day, watching the gulls fly overhead, and the mist of the surf that had crashed upon the beach drift into the cliffs. I could move freely and not feel clumsy, which allowed me to rough-house with Shodan for an extended period of time.

When it became time to return to my blanket, I had to plot an exit strategy. The smartest thing to do would have simply been to have Shodan guide me to the shore, and once it was shallow enough, walk toward the sandy beach with him leading the way, my hands on his shoulders. But, I was feeling my oats, let my bravado overtake common sense, and decided to body surf my way into shore.

This strategy worked temporarily. The first wave didn’t get me very far, so I emerged and tried to stand upright to prepare myself for the next one. I only managed to get one foot planted, and hadn’t yet taken a full breath, when the next wave slammed me from behind, and plunged me into the cauldron.

Since I was off balance to begin with when the wave hit, my feet were nowhere near the ocean floor as I was being rolled around like I was in a washer’s spin cycle. I thrashed around, trying to get my body upright, but not having the use of two good legs was a detriment. I became disoriented, but the bottom of my foot luckily scraped against the ocean floor, and I was able to dig one heel into the sand. To say my adrenaline was pumping is an understatement. That temporarily brought the spin cycle to a stop.

I tried to get both feet planted and lift my torso out of the water so I could take a breath, but another wave crashed and spun me around some more. Somehow, I remain calmed and held my breath. I think subconsciously knew I was close to shore, and that if I could hang in there, something would touch the ocean floor again. I’d be even closer to shore, which might allow me to get on my hands and knees, and at get my head out of the water.

If I had I panicked, I would have inhaled water and, with the boiling ocean tossing me around like a rag doll, drowned less than twenty feet from shore. The problem was that this particular spin cycle lasted longer than the previous one. My lungs were burning, and I realized that if I did not get air soon I’d be in serious trouble.

Fortunately, my back and butt scraped the ocean floor. I instinctively managed to get on my hands and knees, knelt upright, and poked my head out of the water. My eyes, which had been closed tight throughout the ordeal, popped open as I gratefully took a deep breath. I was still a little disoriented, but once things came into focus I could see I was facing out torwards the open sea and was immediately greeted by another wave, which hit me in the face and threw me backwards a few feet. Fortunately, my mouth was closed, and it was shallow enough by that point where I could extend my arms and push myself back onto my knees.

Shodan was in deeper water looking around to see where I was. I wasn’t sure if he had noticed what happened or recognized the trouble I was in, but his eyes locked onto mine and he smiled. I called to him and he free-styled over. When he arrived I placed him in front of me, stood up, placed my hands on his shoulders and had him lead me towards the safety of the beach. As we approached the shore, my legs, which were trembling slightly, could feel the strength of the incoming waves and the force of the undertow. I also noticed that the large rocks I had mentioned earlier were a short distance from where I finally emerged from the angry sea. If I had crashed upon those as I was being tossed around, it would have been game, set, match.

Arriving at our blanket, I sunk into the beach chair and grabbed a towel while Shodan ran back into the water. The gravity of what had just occurred hadn’t fully registered, but I knew that I was very fortunate to be breathing.

Looking back at this, I don’t remember how long I was submerged and helpless. I think it was somewhere between half a minute and a minute, but it felt much longer. The experience was harrowing, to say the least. Had I been able to fill my lungs with air before the first wave hit, the situation might not as felt as desperate, but I didn’t have that luxury. I couldn’t see anything, felt like a tumbleweed in a tornado, and was trying to stay focused so I wouldn’t do something to compound my stupidity, like inhale. Fortunately, I didn’t run out of time.

It’s funny what you think about when confronted with something like that. I remember being embarrassed that I might die on vacation in less than six feet of water, and the scene that would cause. I worried terribly about K, Shodan, my parents, and what this would do to them. I also remember thinking K would want to strangle me if she knew what was going on.

The surf did not subside during the remainder of our stay. Needless to say, other than walking along the beach, I did not step foot in the Atlantic again.

That day taught me are there are certain lines you don’t cross. I already knew that, but did not think of myself as a disabled person. I thought my symptoms might have progressed, because walking was a little harder, my limp was more pronounced, and my balance seemed more tenuous. But my progression was so incrementally slow, I wasn’t sure if this was real or my imagination. But walking in the fluffy sand was much more difficult compared to our visit the previous year. That should have been all the confirmation I needed to understand the progression was real, yet I still ventured out into that tempest. Maybe I though I was bullet-proof. Whatever the reason, it was a foolish, arrogant and reckless act.

I was lucky to survive it.

 

 

The Three Day Quote Challenge – Day 3

Einstein

The rules:

  1. Thank the person who nominated you.  – Thanks again Angela                            ( https://fuckms.ca )
  2. Share a post each day for three consecutive days (3 quotes total)
  3. Explain why you like the quote
  4. Nominate three bloggers to play along

Unlike the last two days, I couldn’t think of a quote to share, so I decided to troll through the internet. To save myself time, I decided to latch onto the first quote I saw that made be feel something, expecting to share something profound and uplifting. Well, I found something profound alright. It certainly struck a nerve, but before I share this with you, be advised what follows is more rant than rave:

So, if we lie to the government it’s a felony, but if they lie to us its politics     Bill Murray

This quote pretty much sums up my disgust with the current state of our local and national politics. Honesty and politics have never gone hand in hand, but the disconnect has been taken to new heights, and it doesn’t appear that anyone seems to care. Self-interest and greed has destroyed compromise and common sense. All of which leads me to another quote (okay, I’m cheating again – sue me).

The difference between genius and stupidity is that genius has its limits Albert Einstein

I’d like to think that no matter which side of the aisle you fall on, you can recognize how broken we’ve become in terms of our ability to at least see and consider another point of view. I’m afraid that if we continue on the same path we’ve traveled over the last decade plus, the divide will become so wide it will take something cataclysmic to mend it. All of which will prove Einstein knew what he was talking about.

Today’s nominees include a friend and two fellow MS warriors.

Karyn is someone I’ve been following for a while but had the pleasure of meeting during our recent blogging soiree with Grace and Superman. Karyn writes about real stuff and is as down to earth as you can get. Check her out when you can ( https://karynsdomain.wordpress.com/ )

Hannah ( https://mymultiplesclerosisandme.wordpress.com/ ) and Ashlie      ( https://crawlingthroughmy20s.wordpress.com ) both suffer from MS and share their trials and tribulations. What I find interesting about their work, besides their writing, is that they are both in their twenties. They write from a completely different perspective than I do, which is both refreshing and sad. Refreshing in the sense that they are brave to share their experiences living with this beast at such a tender age, and sad that they have to deal with this so early in their lives.

This ends my three day homework assignment. Hope I got a passing grade.