Let It Bleed

Bleed

I’ve been taking MS meds for over eleven years. There was an eight year period, which ended two Septembers ago, where I received a monthly infusion of Cytoxan, a chemo drug. Now I get Ocrevus infused twice a year instead.

I’m not the most observant guy in the world, but there are two things about my body that have changed, and I believe these meds are the root cause.

The first is I have lost all the hair on my legs. Now, I was never Sasquatch when it came to body hair, but I had a pretty decent pelt covering my legs for as long as I can remember. That is no longer the case. I’m sure it has been gone for some time, but I never notice these kinds of things. K made this observation a while ago, and I am sure it had been that way long before she mentioned it.

The odd thing is this hair loss as not occurred anywhere else: not my on my arms, chest, head or the nether regions. All remain the same, except for my head, but that’s more of the routine thinning that comes with age. So if the meds have anything to do with it, why there and not anywhere else? It’s odd, but quite frankly, I really don’t care. I am wondering however if anyone has experienced something similar.

The other change concerns the fact that my skin is about as fragile as rice paper. By that I mean I get bruises, cuts and scrapes which draw blood that never used to happen before. Most of the time I’m not even aware that it’s occurred.

Take last weekend for instance. I was abusing my body on a job where Nidan and I were making a patio outside the back entrance of the new house by laying a couple of hundred paving stones on a prepared surface. He lifted these stones from pallets and carried them to me, where I laid them in a grid that ultimately created a patio that was about twenty-three feet long and four feet wide.

I was on my hands and knees most of the time, but did have to get up on occasion, or lean onto or into something to keep my balance. The only time I knew I cut myself occurred when I got up from my knees near a window, and as I raised myself I felt the fleshy section of the back part of my shoulder blade dig into the corner of the window frame.

Back in the day, nothing would have come of it. At worst, it might have resulted in a small bruise or perhaps a small scratch that didn’t break skin. Instead, I lost a small chunk of skin and it drew enough blood where I could feel begin to trickle down my arm. So K exhumed a small alcohol pad  from the first aid kit, cleaned the wound (which felt wonderful), put a Band-Aid on it and we were good to go. It still looks nasty five days later.

When we returned home after eight hours at the site, Nidan noticed a gouge on the back of my leg near the heel that I didn’t know was there, and have no idea how it got there. I also noticed about a half-dozen zig-zag type scratches that had dried blood on them, in addition to a nickle-sized abrasion on one of my kneecaps, presumably from being on my knees all day long. I could see that happening if I was kneeling on solid stone, but I was kneeling on a cushioned pad instead. Somehow, the constant shifting peeled several layers of skin, and what I wound up with was an angry, seeping abrasion.

As I was finishing up that day I noticed that the nail on my big right toe was sore. When I was on my knees, a lot my weight was placed on tops of my feet, which were pressing into the patio surface most of the day. I inspected the toe and saw nothing unusual, and therefore didn’t give it much additional thought.

My foot often twitches during the course of the day, and when that occurs the big toe usually curls upward into the toe of my shoe. Most of the time I don’t pay attention to it, but yesterday my toe hurt every time it curled up. Upon removing my sock to inspect the cause, I saw that almost half of the area under the nail had filled with blood and was turning blue/black color. If anyone of you have ever banged your fingernail with a hammer or mistakenly kicked a hard, immovable object, you know what I’m talking Toenailabout.

These types of things have been occurring for several years, with more frequency each subsequent year.  Trivial mishaps that might have resulted in a bruise or small scratch that didn’t break the skin’s surface, always create a bruise or draws blood now, and sometimes a lot of it. Nothing that is stitch-worthy, mind you, but enough to use several tissues to stem the tide. Since my balance is so bad, I am frequently bumping into something, and if that something has a sharp corner or edge, I bleed.

My Dad lived until he was 96, and his 96 year old skin was a lot tougher and more durable than mine is now. The only explanation I can come up with is that the meds have done this. What else could it be?

Hopefully it won’t get any worse.

 

 

 

The New Normal

Normal

2019 will mark the eleventh year I have been living with MS. After it rudely introduced itself,  first on a treadmill and then a few weeks later when I was outside mowing the lawn, the symptoms weren’t that cumbersome. It took a couple of years before it permanently changed the way I walked, and the progression has been slow but steady ever since.

Some years have been worse than others on the progression front, but the result has been the same: my physical abilities are worse on December 31st than they were on January 1st.  That isn’t unusual given the nature of my beast, but as I was cruising with the blimp the other night watching a video that chronicled the Red Sox magical 2018 season, a thought occurred to me that in retrospect was both surprising and sad.

I honestly can’t remember what it feels like not to have MS.

That doesn’t mean I don’t I remember the life I once had, the one with no physical restrictions. After all, I still have the pictures and video. That was a life where I didn’t think twice about undertaking any chore,  where I could to stay outdoors in the summer heat as long as I wanted, and where I could play eighteen holes of golf on any kind of course. Those days seem so carefree and foreign now.

So yes, I remember the events. What is forgotten, however, is what it actually felt like to walk unimpededly, without thinking about every step I take. I don’t remember what it felt like wondering if every change in my body is an indication of additional slippage into the rabbit hole of progressive MS. I don’t remember what it felt like to run, go on long walks, to ride a bike, to frolic on the beach, to take the stairs without measuring each step, or not having to worry about falling in public. I don’t remember what it was like not having to worry about where the nearest bathroom is for fear of peeing myself, or not requiring a urinal within arms reach every time I am in my car.

My new normal has eclipsed everything about my old self. The mindset where everything is assumed and taken for granted is dead. I don’t remember anything about what is was like to be whole and able bodied. I don’t remember what it was like not having to go to a hospital every month to have my blood filtered and replaced, or having toxins infused in the hope that my body will stop cannibalizing itself.

I don’t think I’m unique in that regard, but I consider this disability as the death of my former self. That might be hyperbole because I obviously still reside in the land of the living. I have the same emotions, many of the old concerns, and continue to plod forward and rebel against my reality any way I can. In some ways I am better off mentally because I no longer take anything for granted, appreciate the little things more, and therefore have a better perspective on life. But it is not an exaggeration to say that I am a fundamentally different person than I was eleven years ago, and that this version of me could feel like Nirvana compared to what my status might be another eleven years from now.

This is the part of living with a chronic illness/disability that nobody talks about or explains to you. When you learn about your new reality, it’s understood at a certain level that your life will change. If you accept and adapt to that change like I did, you adjust to a failing body with as much grace and stubbornness as can be mustered. You don’t give up or give in, but in that process you also don’t realize that your previous life will be relegated to the dustbin of your memory until the day comes, like it did for me earlier this week, when you realize you can’t remember what it felt like to be the person you once were.

An argument can be made that this is a part of the aging process, but I’m not willing to concede that because I’m not even sixty yet. I’m no spring chicken, but I’m not an old geezer either. This is not the mournful lament of a man in his seventies who is acknowledging the effects of an aging body for the first time. My epiphany was the product of this neurological condition that has consumed my life over the last decade, and it caught me completely off guard.

The fact that I can’t remember any of the stuff I mentioned burst my denial bubble, at least temporarily. Not being able to remember what it felt like to have two good legs is like not being able to remember what it felt like to fall in love the first time, to lose your virginity, or to hold your infant child for the first time.

I’ll get over it, because what’s the point of crying over spilled milk? But it really does suck.

 

Taking Up Space

crowd

I am five feet ten inches tall with a frame that, while it can’t be termed slender, certainly isn’t large or rotund. Average would probably the best way to describe it, given my age and weight. So for a guy of my stature, why do I feel like Fat Albert?

In fact, I often feel like I take up the space of a person three to four times larger, but never when I am sitting down or sleeping. I only feel this way when I am mobile, particularly when I am unleashed on the public, or if I am in close quarters. And it does not matter if I am home, at work, or outside.

You see, even with a cane, I wobble from side to side when I walk, courtesy of the bad leg and lousy balance. Walking in a straight line is almost impossible, so much so that I have wondered what would happen if I ever got pulled over at a sobriety checkpoint. If a breathalyzer wasn’t administered,  the cops would probably slap on the cuffs in a heartbeat watching me stagger around.

Not only do I wobble, but will careen to my right or left whenever my foot doesn’t clear the walking surface and I stub my toe, which is a daily occurrence. Whenever possible, I use a handrail. If those aren’t available, I try to have part of my hand on a wall, or make sure a wall is within arm’s reach.

Anyone who sees me coming will often veer off to the opposite side of the road/hall/sidewalk/room. Perhaps they are being polite and don’t want to obstruct my path, but I think it’s because they see someone unsteady on their feet approaching whom they don’t want to get entangled with. These are the smart ones.

I can no longer stop on a dime either, having lost that talent years ago. So if someone is turning a corner and I’m right in front of them, I have to place my hand on their shoulder to keep them from running me over. If they, or anyone for that matter who is coming at me and hasn’t been paying attention until the last moment, tries to get out of my way the same time I am trying to avoid them, I can tumble to the ground even if we don’t collide. I can zig, you see, but not zig-zag. That sudden shift causes a loss of balance, triggering the laws of gravity.  This is a fate I try to avoid at all costs, and have managed to circumvent so far.

Narrow office hallways, which seem like the norm from my perspective, are always fun. It can be snug for able bodied people to pass one another in these conditions. Me? If the oncoming person doesn’t see me coming and step aside, which happens about half of the time,  I stop, place my back to the wall, and let them pass.

At home, and particularly in the kitchen and laundry areas, I feel enormous. That’s because as K is darting about in her typical multi-taking mode, I try to lend a hand, but often wind up getting in her way, which can be annoying for the both of us. Annoying to her since she can’t operate at the speed she wants to because I seem to be in the way at every turn, and annoying for me because I’m trying to help, to feel like a productive member of the household, and feel like I am anything but, which only magnifies my physical shortcomings.

To feel perfectly secure, I need a safety zone around me that is about three feet in circumference. With those three feet, I am not a danger to anyone else or myself. I have enough space to ensure I won’t be bumping into anyone, or be in danger of being bumped into and falling. I won’t be a nuisance to anyone either because I won’t be in their way.

That is what I want and need, but it isn’t something that can be demanded or communicated. Folks who have known me for a while know to give me a wide berth and do so willingly and without judgement. Sometimes they go a little overboard by offering to do stuff I am capable of doing, which can be annoying, but their heart is in the right place.

In public places though, like an airport, like Fenway Park, the mall, or the grocery store, not so much. It certainly isn’t as easy to negotiate these kind of environments as it used to be, but I have learned to become hyper-vigilant in these situations in terms of who is entering and leaving my orbit. My one blind spot is, obviously, what is behind me. If I suddenly stop, and somone walking behind me is looking at their phone instead of what is in front of them, the resulting collision could be nasty. This has happened only once, in an airport, but I was fortunate enough to have my cane planted in front of me, which allowed me to push back and remain upright as my knee crumpled and I was on the verge of going down in a heap

Here is the irony: on one hand I can become agitated about how oblivious and rude people can be in these situations, and bemoan the fact they are so self-absorbed they can’t or won’t pay attention when someone like me is around. On the other hand, I get agitated at myself when I become aware of these feelings. Why? Because I have never wanted nor expected special privileges or accommodations, other than parking, for my condition because that would be conceding that I am damaged, or somehow less of a person. It is therefore my responsibility to be acutely aware of my surroundings, not their’s.

So yeah, I need room to operate, but understand it isn’t something I should feel bad or  self-conscious about. This inconvenient truth isn’t something that is going to prevent me from going where I want to go either, as seven trips to Fenway this season prove.

Besides, it could be worse. I could be in a wheelchair, which would not only consume more space than I currently require, but restrict what I can do and where I can go. So I’ll happily keep the status quo, as frustrating as it can sometimes be.

A Once-Familiar Routine

IV

Later this morning, after having spent a couple of hours sitting in a comfy chair hooked up to a centrifuge for the apheresis procedure, I will receive my second full dose of Ocrevus. There is nothing remarkable about this, other than the fact that I don’t remember how I am going to feel for the remainder of the weekend. This is ironic because there was a time when I knew exactly how the weekend was going to play out, and planned accordingly.

From 2009 through last September, a span of over eight years, getting a Friday infusion was a monthly ritual. The drugs were different, but the routine was the same: get hooked up for the apheresis, sit for an hour and a half or so,  then have the sewing needle in the crook of my elbow in one arm removed while the remaining smaller needle in the other arm would be hooked up to an IV bag. Then I’d sit another couple of hours, napping for most of the time, while the drugs were administered.

When it was over, I’d drive home and settle in for the weekend. Friday evenings were spent lounging as a heavy fatigue set in. Other than dealing with periodic hiccups and feeling very warm on Saturday, I putter around the house or do a few errands that weren’t too taxing, just to make myself feel useful.

Sunday was a lost day, when the brunt of the chemo’s side effects hit. My head felt like mush, crushing fatigue would set in and I’d spend all day in bed, either watching television or nodding off. One of the first posts I wrote for this blog described in detail what those Sunday’s felt like. Refer to the chemo drug paragraph of that post if you want to refresh your memories.

The worst thing about this regiment was that it killed one weekend a month. This may not sound like a big deal, but trust me, it was. An every four or five week commitment doesn’t sound bad on the surface, but these infusion weekends often fell at an inopportune time, especially during the holiday seasons.

What appealed to me about Ocrevus, besides the fact it was supposedly designed to help those of us with the progressive form of MS, was the infusions only occurred every six months. The idea or losing two weekends a year instead of twelve sounded like Nirvana. If I’m being completely honest, that fact by itself swayed me to make the switch.

I still get the plasma transfers every month, so it isn’t like I’m appointment free. But those only last an hour and a half and, other than being very tired the evening after the treatment, there are no side effects, and I am as good as new the following day. I have more freedom because I don’t have to worry about having to reschedule a weekend event or the infusion itself because a personal conflict. I also feel less of a burden to K, who had to plan her weekends around an absentee husband.

I’m a little more apprehensive about the getting these infusions than I used to be, and I attribute that to not remembering what tomorrow and Sunday will be like. I have a hard time remembering what I ate for dinner yesterday, so trying to remember what the weekend following an infusion I had six months ago was like is futile

I believe today and tomorrow will be fairly benign, and that Sunday will suck, but what will the degree of suckiness be? Will it be a shutdown Sunday where I don’t leave the bedroom except to go pee, or will it be worse? The first few times I had my original infusions, I could barely open my eyes, my head felt like it weighed a thousand pounds, and when I was mobile, I felt like I was walking in quicksand.

Will it be that way again on Sunday? Will I have a better experience because my body isn’t saturated with the stuff? Or will it be worse because my body isn’t used to having these heavy duty meds infused?

This leads to the question of whether taking these meds is worthwhile. I have never felt remarkably better after the infusions, and while I assume these meds are helping my condition, I can’t say for a fact that they are. What I do know is my progression has proceeded at a snail’s pace for the past eleven years, but the big question is if that is  because of pharmacology,  or is it simply the nature of my MS beast, and taking or not taking meds doesn’t influence it one bit.

One of these days I’ll either learn the answer to that question, or simply get tired of taking this stuff and get off the pharmacology treadmill. For now I will stay the course, but maybe I should take notes about how I felt this weekend that I can refer to next March, when the next infusion is due.

That way I will know what to expect instead of guessing what it is going to be like. The more anxiety I can eliminate from this equation, the better.

 

 

A Precursor?

vortex

Shortly after I was christened with a diagnosis at the age of 48, I began to wonder if there had been signs that something was brewing that I hadn’t noticed. Then the treadmill incident came out of the blue like a bolt of lightning with no prior warning, and it seemed odd that something like that would just happen for no reason. I asked everyone I could if they knew of anyone within the family that had MS, and came up with a big goose egg. So I scoured my memory to see if I could remember anything that could have been a sign that something was coming, remembered the woozy spells that used to plague me, and wondered how in the world I could forgot those.

Back in my twenties and thirties, I used to get these episodes that had no name or explanation that I called woozy spells. They are hard to describe, but what would happen is I would get this feeling in my head like a switch had been turned, followed by a feeling like all the blood was draining from my head. Think of a balloon that has a not so slow leak and you will understand what I mean. My vision became impaired, as a curtain of yellow descended over my eyes with sparkling stars flickering about. This yellow fog evaporated after a few seconds, and I was left feeling like utter shit with a head and body hangover.

These little bastards came in clusters, occurring several times over an entire day, and sometimes while I was asleep. Each new blast made me feel more hungover and wrung out than the previous one, and Advil would only do so much. I distinctly remember being in a department head meeting one day taking about something while one of these popped out of the blue, and I had to strain real hard to continue my train of thought while I couldn’t see two feet in front of me and my head felt as if it was being sucked into a black hole. I worried it might be a stroke of some kind, although I had no idea what that felt like, but dismissed the idea because I could still talk, raise my arms, and things of that nature. It took two to three days to recover from them and feel normal again.

I would get whatever these things were every three of four months like clockwork, but I never saw a doctor, even though K implored me to. Remember, I was young and felt bulletproof. Besides, what the hell was anyone going to do to prevent them? Maybe deep down I didn’t want to know.

Then one day the mother of all woozy spells occurred while I was driving. I was coming home from Stop and Shop one afternoon when it hit me. In order to understand the significance of what happened, you first have to understand the route I drove to the store.

Back then I lived on Main Street in Portland. I would drive over the Arrigoni Bridge, which spans the Connecticut River into Middletown. Then I’d take the back streets to avoid the busy Route 9 intersection, and travel along Newfield Street into Cromwell and soon turn left into the Stop and Shop parking lot. On the way home I would turn left out of the parking lot and hop onto Route 9, which was less than a quarter mile away. I’d be on Route 9 South for about five miles and take the Portland exit  at the stop lights directly below the bridge, and drive back over the bridge, onto Main Street and home. This circular route was about ten to twelve miles in length.

On this particular trip, I was a less than a mile from the bridge when it hit. I could see the stop lights at the intersection below the bridge, which loomed large in my windshield. The next thing I remember is being in my car on Route 9, but further away from the bridge. I could not see the intersection or the lights, and I could see only a portion of the bridge. My head was pounding, my body felt like it was in mud, and I was shaken to the core. The only thing I could think of was “How the hell did I get here?

The answer was obvious, although I still can’t believe it these thirty years later. I had blacked out, yet still managed to arrive where I was without injuring myself or anyone else. I had taken the turn at the stop light under the bridge, then drove the back roads one more time past the Stop and Shop parking lot and back onto Route 9 before I realized where I was. This trek spans at least eight miles, has numerous stop signs and stop lights, at least three right hand turns and takes about fifteen to twenty minutes. To this day I don’t understand how I did it. It’s a fucking miracle, quite frankly.

Nothing of this magnitude ever occurred again, and I didn’t tell a soul about it for years. The woozy spells ended in my late thirties, and I never gave them another thought. I did tell my neurologist and asked if these were precursors of the MS brewing, but he didn’t think so. He said they sounded more like ocular migraines, which made sense once I looked them up on the internet.

That closed the book on these things until today. I still don’t definitevely know what they were, why they occurred or what they mean, and I think I will leave it that way.  You see, my parents both passed in 2015, my Dad of a massive stroke that he succumbed to four days later, and my Mom to a cerebral hemorrhage she died from hours after it occurred. It isn’t that I don’t think about them because I miss them, which I do. But they lived until the ripe ages of 96 and 92 respectively and led healthy independent lives until then. We should all be so fortunate.

No, I don’t think about them because what happened to Mom and Dad are an established part of my family’s medical history. Both seem to be more in the orbit of whatever it was that was happening to me back then compared to ocular migraines, and that is a path I would prefer not to dwell upon.

The Games Health Insurers Play

games

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.

games2

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.

 

 

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.