Category: PPMS

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.

 

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.

 

 

My Restless Leg

Restless leg

The potpourri of symptoms I’ve previously chronicled include a severely drooping foot, no leg strength from just above the knee, an ankle that constantly wants to turn sideways, and occasional cramps in my toes, the arch of my foot, and my calf. And let’s not forget balance, specifically the lack thereof. I’m not exaggerating when I say that a strong and sudden gust of wind can cause a loss of balance and an unexpected fall.

The one symptom I’ve never mentioned before, which happens to be the most annoying, is something called Restless Leg Syndrome (RLS).

Here is a quick definition: RLS causes unpleasant or uncomfortable sensations in the legs, creating an irresistible urge to move them. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is sitting, resting, or lying in bed.  They also may occur when someone is inactive and sitting for extended periods (for example, when taking a trip by plane or watching a movie). There are a variety of sensations that generally occur within the limb that prompt the jerking movements: crawling, creeping, pulling, throbbing, aching, itching, and a feeling akin to an electric current. Research shows that people with MS are about four times more likely to have RLS than people in the general population.

In the scheme of things, my RLS isn’t a big deal. There is no pain or discomfort whatsoever that alerts me to its arrival.  Nonetheless, it’s aggravating to the extreme.

First of all, I can’t control it. Without warning, a jolt electric current surges into my lower leg, causing the toes to curl upward and the foot to lift. Sometimes it’s a quick twitch, and other times it lasts a few seconds, where the big toe is trying its damnedest to touch my shin, or the leg sticks straight out with the heel pointing forward, before it flops back to earth.

Secondly, when the twitching begins, it can occur as many as three times per minute. Do the math. It’s hard to enjoy anything when your leg acts like a flopping fish desperately trying to find its way back into the water.

I’m not self conscious about the way I walk or things of that nature, but I am about this, primarily because I think it looks bizzare. When someone parks in a handicapped space or you see someone with a cane, you expect to see them them walk differently or have a more difficult time getting about. Imagine sitting next to someone who looks perfectly healthy at work, in a movie theater, a sporting event, a wedding, or sitting in their living room over drinks, and their foot/leg begins to spasm and doesn’t stop. If you get too close, you might even get kicked.

The spasms always occur when I’ve been sitting for extended periods of time, like right now as I’m writing this piece. They can and do occur at work, but all I have to do is get up and walk around to make the twitching disappear. I don’t always do that because the spasms don’t impact my ability to do my job, but there are other times where getting up and walking around is impossible, like when I’m driving.

I have to be extremely careful when the leg starts flailing while I’m driving, because my bad leg is the right one, which controls the accelerator and brake. Try accelerating or braking  when your foot is trying to curl backwards. I’ve learned to brake with my left foot if necessary, and most of the time I can coast the few seconds during which the spasm occurs. If I’m on the highway when this happens, cruise control comes in handy. Nonetheless, my next new car is going to have to be equipped with hand controls whether I like it or not.

If I am at a public event or gathering of some kind, I don’t stay on my feet for extended periods of time, which means I’m usually sitting. In these situations I try to make sure there is some distance between me and the person I am sitting next to or across from, and do whatever I can to hide my legs. Sometimes, I’ll cross my feet to prevent the leg from protruding too far should the spasms start.

Then there is the issue of trying to fall asleep when RLS is active. In K’s recent post, she rightfully said that I don’t get enough sleep, but one of the reasons for this is that it doesn’t seem to matter what is going on with the leg when I’m dead tired. I’ll still fall asleep in five to ten minutes. Otherwise, the twitching, which occurs almost every night night, makes it hard to get comfortable.  I become restless, annoyed, and eventually wide awake. Of course, I could walk around to make it stop, but it takes more than a brief stroll for that to occur. Either way, it takes a while before sleep comes, and I get even less sleep in the process.

These are some of the reasons why I find RLS so annoying, but it is not the reason

K lamented that I do a lot of things that Shodan can and probably should do. Why? Because it gives me a sense of control over my tormentor. From my perspective, giving into MS by letting others do the work I am still capable of doing is like conceding to an enemy that wants me  to wave the white flag of surrender, which I simply refuse to do. So even though snow removal is very difficult, and I do stuff in the yard that my son could do more easily and in a fraction of the time, I find ways to compensate, which allows me to complete the task. This is all about my will being stronger than the MS, and not letting it get the best of me.

None of that works with RLS.  It’s as if the disease is taunting me. “So you think you can ignore me? You think you have control?” it whispers. “Let’s test that theory while I fuck with your leg for a little while. See how that works for you!”

I am absolutely impotent in this situation, which serves as a not so subtle reminder that I’m denying this inconvenient truth: if and when MS decides to throw the hammer down and takes control over everything I stubbornly cling to, I will be powerless to stop it.

And that is what bugs me the most.

Marriage and MS

IMG_0277

Steve has asked me to guest write for his blog. So here it is, from the spouse’s perspective. As I write this, we are spending the day at Yale Smilow Cancer Hospital, where Steve receives his infusions. Walking around this facility, it’s difficult not to be humbled. I found myself strolling behind a preteen girl riding a motorized wheelchair sporting a Make-a-Wish back pack. I ached for the young woman, perhaps in her early twenties, laboriously shuffling along with her walker, determined to make it to the infusion chair on her own, as well as the brave young boy, no more than eight years old, hooked to the apheresis apparatus.

Once the nurse found Steve’s vein on both arms, and the process began, I sat with him to chat. It’s a boring procedure, as he must stay awake while squeezing a rubber ball to facilitate blood flow. I’m not good with blood, but I’ve become accustomed to bearing witness to such things. I’m thankful that I wasn’t there for the visit where the machine malfunctioned, spilling blood all over the place.

Steve and I have been married thirty years, and during that time we’ve gone through many happy moments as well as more than enough difficult times, thank you very much. I am also well aware that we are blessed, and many people have been dealt an even tougher hand.

I often joke that one man is quite enough, but in reality, I believe that marriage is sacred. Marriage is tough, and many nuptials succumb to real-world pressures. As young couples, we bask in the joy of a wedding, never really thinking about the actual wording of those vows. Few of us realize the importance of “through good times and bad, in sickness and in health.” If you stay together long enough, none will escape the bad times, and rarely will a couple avoid the sickness part. It’s not easy.

In our case, I was the partner with the chronic ailments – migraines and stomach woes were part of the deal. Steve was supportive and steady, plodding through whatever came our way. While I had more endurance for pushing myself through exhaustion and icky days, Steve was hardier. He went about his day, living on little sleep (I can’t even argue about it anymore), and enjoying good health.

So, when he first described his initial symptoms, I urged him to see a doctor. And when the initial diagnosis came back as “tight hamstrings,” I said bullshit, and sent him to another. When he was formally diagnosed with MS, my initial feeling was shock. My friends acted like it was the end of the world, and yet, a part of me knew that Steve would take this on as he had everything, strong and steadfast, placing one foot in front of the other. Little did I know, that this would become a metaphor for his life, as he struggled to simply get around.

Having said that, my husband can be a pain-in-the-ass, and MS has made him even more so. He refuses to get enough sleep, he pushes himself when he shouldn’t, and he argues with me every time I urge him to pass on the heavy lifting to our son. “I can do it!” he’ll say. He reminds me of a stubborn toddler. I try to understand that it’s a matter of pride and independence, but really, we all have to let go of those twenty-year-old capabilities.

Speaking of arguing, my once easy-going, go-with-the-flow man, isn’t flowing anywhere. I swear what Steve has lost in physical ability he has gained in debating acuity. I say black he says white, my apple, his orange. You get the point.

After knee surgery, I hobbled around with a cane. My shoulder ached, my back felt out of whack, and I couldn’t imagine dealing with this, Every. Single. Day. It gave me a brief glimpse into what he must endure, dragging that leg around, and yet, try as I might to be patient, I sometimes find myself annoyed when he blocks me into a corner, or walks right in front of me, necessitating a quick pivot around him. All in the name of balance. Or his lack of it. Secretly, I think there are times he uses his MS, perhaps not even consciously. “Honey, why don’t you just throw the cat food can in the garage bin?” “I want to conserve my walking.” I don’t always understand how six more steps could make a difference, but then if every step is a feat of balance, and he’s tired on top of it, I suppose it does.

And then there is the worry and angst. Worry about his health, worry about my ability to take care of him and our family, worry that this horrible illness might break his spirit; and angst from watching him struggle. Sometimes it actually hurts to watch him walk up the stairs. Other days, I want to scream out loud when I see him schlepping around the yard, dragging a garden hose or carrying something cumbersome. Sometimes I do. “Let Shodan carry it,” I yell out the screen door. “I can do it myself,” the toddler screams back.

And then, when I find myself exhausted and frustrated, and even a bit pissed, taking care of the house, my mother, my son, meals, laundry, house maintenance, I try to remember to take a breath and count my blessings. Steve is still able to work, and this affords us a nice standard of living. His MS has progressed, but not as quickly as it could have and may still. When I find myself panicking about the future, I try to embrace his idea that whatever may come will come. Most important, I know that we are in this together.

If you enjoyed reading this essay, I would be most appreciative if you would Like and Follow my author page and pass the word!! https://www.facebook.com/kimmarkesichauthorpage/

 

 

Relationships

Relationships

Author’s note: Wouldn’t you know it? My wife’s post had more views than any of the others that preceded it. I’ll be hearing about that one for a while.  Be on the lookout for an occasional post from K in the future. In all likelihood, it will occur after the pain-in-the- ass husband has gotten her to the point where she needs to vent.

Let’s start by stating the obvious: living with a chronic condition sucks. It changes your life by not only placing physical limitations on what you can do, but also provides mental and emotional challenges that did not previously exist. A future that may once have had limitless potential is confronted with storm clouds as far as the eye can see.

All of which make relationships so important. Whether it’s your spouse, life partner, good friend(s) or all of the above, loving relationships make you feel whole and help distract you from your struggles.

Relationships are the ballast that keep our listing ships afloat. They are the mortar that keep our psyche intact. The people in these relationships accept us for who we are, not what we once were or may be. They pick us up when we are down, and kick us in the ass when we’re feeling sorry for ourselves. The sum of these are so vital for us to maintain our self esteem and keep plodding forward.

One of the many things living with something a chronic condition teaches you is how solid the relationships in your life truly are.

I’d like to believe that “in good times and bad, through better or worse, in sickness and in health” mean something, but I’m not naive. Health issues can break up the best of established marriages, and cripple new ones. They are especially corrosive when kids are involved. My MS journey validated what I always knew but perhaps never fully appreciated: K is an exceptional, wonderful human being and I’m lucky to have her.

In terms of relationships with friends, the only benefit of getting something like MS in middle-age is your friends are long-established, and you don’t need to hang with them as much because you have a history and have already carved out lives for yourselves. When you do connect, the atmosphere is laid back, low key, and comparatively mellow. The danger of being isolated and alone due to physical limitations is low.

Finding and/or maintaining friends and lovers in your twenties is much harder when a chronic condition invades your world. Appetites are insatiable at that age. You’re  ravenously exploring what life has to offer. Hanging with the crowd becomes impossible when you’re health weighs you down. While it might not be their intention, it’s hard for friends not to leave you in the dust in that situation. After all, life is a 100 yard sprint at that stage of your life. That’s hard to accomplish with an anchor chained to your leg, and you, tragically, are that anchor.

friends

As far as dating is concerned, not hanging with a crowd makes it difficult to meet and mingle, plus there is the issue of how much to disclose and when to disclose it. Honesty is such an important foundation in any relationship, but if you are forthcoming about a condition like MS from the start, you run the risk of not even getting out of the batter’s box. But if you aren’t forthcoming at all or lie about it, you’ll eventually be exposed as a liar and a fraud, which is worse. Most people aren’t willing to look past your flaws if you can’t be trusted. Talk about a dilemma!

Then there is the issue of feeling lousy or living with pain. It hard to feel or muster the fire and passion that’s taken for granted at that age when that twin-headed monster lurks.  My only advice is to be persistent, stay true to yourself, hope the best, and when you unearth that hard-to-find diamond who looks beyond all that, hold on as tightly as you can without smothering them.

Some may subscribe to the premise that my life took a cruel turn. I can’t deny  there is some truth that assumption, but I don’t dwell on it because my condition didn’t surface until I was close to fifty years of age. That isn’t ancient by any measure, and my retirement years will no doubt be different from what I hoped. Hell, my fifties have been a lot different from what I expected. But, I was able to live it up in my youth, and the years that followed the diagnosis haven’t changed my ability to enjoy life. I can live with that. The last decade has certainly had some challenges and difficulties, but the pace of my life was already beginning to wind down when MS came calling, making the bitter pill easier to swallow. I’m pretty chill when it comes to my reality.

If I were in my late teens or twenties? I’d be a basket case. The perspective my life experience has provided is extremely difficult if not impossible to grasp if you’ve been saddled with this at such a tender age.

My heart bleeds for anyone who has.

An Attempt at Poetry

Poem

Inspired by Tom Being Tom, and encouraged by Susan at Floweringink, here is my inaugural (and very possibly only) attempt at poetry

Adrift

In a restless void

With no compass or sextant

To guide me

Castaway

From life’s normalcy 

Without pity or remorse

Those shores are distant

Never to return

Destination

Unknown and alien

No sails unfurled 

No charted course

On an endless sea

Clouds

Angry bruises

Swallow my horizon

Foreshadow the tempest

Of a raging gale

Despair

Will capsize my ship

An indulgent luxury

Its charm seductive

Its consequences tragic

So tempting

Trust

Surrendering the rudder

I lay on the deck

Close my eyes

Let go of the fear

Yearn for the sun’s embrace

The glory of a new day

And destiny

A Cold Shower

Shower

Before I get started, A BIG THANK YOU to Tom, of Tom Being Tom fame, for being a guest author last week. Your contributions were well received and much appreciated Tom. A handful of other bloggers, and some published authors, whose writing I enjoy and admire have also graciously agreed to contribute to this blog when the mood strikes them. I’m looking forward to reading what they have to say with great anticipation.

We now return you to the regularly scheduled program………….

When I was first diagnosed, I received a lot of advice from various outlets, the primary one being that I should seek the help of an “expert” in the MS field. I wasn’t keen on that idea at first, but eventually warmed up to it. After all, there is nothing wrong with a second opinion, and I became increasingly curious about what they might have to say or recommend.

Johns-Hopkins emerged as the preeminent facility closest to home. Making an appointment was easy, and I wasn’t choosy about who I saw because I assumed they were all good.  Once the date and time was set, I signed the necessary releases so they could obtain my MRI results and medical records, then booked a round-trip flight to Baltimore and a room at the Inner Harbor Marriot. When I subsequently mentioned the trip to a good friend, he decided to drive from his home in Pennsylvania and hang out with me for the weekend. This made the upcoming journey seem like a fun thing to look forward to, rather than a solitary business venture.

We met in the hotel lobby shortly before noon that Friday morning, discussed our plans for the weekend, and he asked if I wanted him to join me for my 1:15 pm appointment. I had never considered it, but thought it might be a good idea. Having another set of eyes and ears would help insure I didn’t miss anything the doctor had to say. This turned out to be a wise decision, but for different reasons.

Both of us had worked in the healthcare arena our entire careers and were not intimidated or awed by hospitals or clinicians. Nonetheless, I was apprehensive about the appointment and what I might learn, good or bad, from it. After all, this was Johns-Hopkins, and they knew their shit. It felt like I was going to court to be sentenced by the judge.

Once we arrived, the registration process didn’t take long and we were ushered to the clinic, then escorted to a treatment room. A few minutes later the physician arrived, and introductions were made.

I started rattling off things about myself, my clinical history, and why I chose to come to Hopkins. Then I started asking a bunch of questions about treatment, prognosis, and things of that nature. Looking back on it, I’m sure it was obvious that I had made a pilgrimage to what I thought was the MS mecca of the eastern seaboard.

It turned out to be more like Dorthy meeting the Wizard of Oz, because when I had finished talking, he gazed at me with a look that was a combination of indifference and boredom. The first words he said were:

“When has medicine cured anything?”

Talk about a buzzkill.

At first I wasn’t sure I heard him correctly, then scrambled to try to hide what I’m sure was the crestfallen look on my face. For the next fifteen minutes, he asked a few questions and provided information regarding what I might consider doing in terms of treatment, diet, and things of that nature, but that is all a blur to me now. I had tuned him out, and picked up the pieces of what I didn’t hear from my friend later on.

I was dumbfounded. After all, what this guy just said, or so I thought, was “why did you come all the way down here, you idiot. You’re fucked, don’t you know that?  If you’re looking for encouragement you came to the wrong place.” Whether that was fair or not, I could not believe I came all the way from Connecticut to what I presumed was one of the premier MS institutions in the country to be treated like this. I wasn’t looking for a cure because I knew none existed. What I was looking for was information, validation, encouragement and, most importantly, a reason for hope. Instead, I received an ice cold shower.

My friend and I left the treatment room in silence, headed to the main hospital lobby, and sat in one of the sofas. I turned to him and asked “did that really happen?” He smirked and replied, “I was about to ask you the same thing. I can’t believe he actually said that.”

The remainder of the weekend was spent exploring the Inner Harbor, taking in an Orioles game at Camden Yards, and enjoying the fine cuisine the city had to offer. We cracked jokes over dinner and drinks about the healthcare business in general and that physician in particular, so the trip was not an entire waste.

I’m not sharing this story to declare this physician did me a favor, and how grateful I am for it. At the time I was incredulous, confused, and rip-snorting pissed. His general demeanor and attitude irritated me the most. Besides, I didn’t totally agree with what he said, but didn’t want to debate the point. I may be splitting hairs here, but didn’t medicine solve polio and several other scourges?

The reason for sharing this story is to tell you about the two invaluable lessons I learned from this experience which have guided me throughout my MS journey, and apply to anyone suffering from a chronic condition.

Lesson one is to be your advocate and decision maker regarding your health and treatment. Don’t search for the Holy Grail because it does not exist. Finding a  knowledgeable clinician you connect with is paramount, and you can find one nearby if you look hard enough.

Lesson two is to learn as much as you can about what is ailing you, and don’t automatically defer to your clinician just because of who they are. Ask a ton of questions, don’t worry about whether they may be “stupid”, and if something doesn’t feel right, don’t do it.

I didn’t practice either of these until after the Hopkins experience. Otherwise I never would have agreed to self-inject with both Betaseron, and then Copaxone. I had primary-progressive MS, and knew these drugs were not clinically effective for it, yet I agreed to take them because that was what my neurologist suggested. Needless to say, they didn’t do a thing for me other than cause occasional pain from the injection, bruising and welts.

I also would not have agreed to having a spinal tap in the neurologist’s office. I knew they were generally performed at a hospital, and thought I might be more comfortable and relaxed in that setting, yet agreed to the office because that’s what he wanted and I trusted him. It turned out to be a bad idea, and I wound up going to the hospital anyway after four unsuccessful attempts at drawing fluid. I changed neurologists shortly thereafter.

The Hopkins gambit opened my eyes to what I was doing wrong and helped transform me from being a docile mouse who agreed to anything my doctor said, to someone who took ownership of an uncertain future.  I found a new neurologist, and have been with him for the last eight years. He is on top of all the research, and has a wealth of information concerning what has and hasn’t worked for the thousands of patients he has treated over the years. He shares the pros and cons of any recommendation he might suggest based on this knowledge provided I ask the questions, which allows me to chart my own course.

To this day I don’t understand why that doctor at Johns-Hopkins said what he said or acted the way he did, and often wondered if he treated all first-time patients the same way. Out of curiosity, I checked to see if he still worked there before I started writing this entry, and wasn’t surprised to learn that he did not. He’s on the faculty at the National Institute of Neurological Disorders and Stroke in Bethesda, MD.

A research and academic environment like the NINDS sounds like a perfect place for this guy. After all, his bedside manner left a lot to be desired.