Category: New MS patients

The Art of Falling

fall down

Something rare occurred Thanksgiving morning. I was outside, trying to pry some carrots out of the suddenly frozen dirt of our garden, when it happened.

That section of the yard is slanted, and has always been a treacherous tract for me. Perhaps it was because the ground I was standing on was hard, lumpy, and I couldn’t get a good foothold when I felt my balance shift. Whatever the reason, my bad foot got caught as I was shuffling to my right, my ankle turned, and I was confronted with two choices: stand my ground and risk the full brunt of my weight collapsing on the ankle, which would have resulted a moderate sprain at minimum, or save myself from imminent injury, let gravity do its thing, and let myself fall to the ground. It really wasn’t much of a decision. I stopped resisting and let my body fall.

I wouldn’t say the fall hurt, although it was definitely not a soft landing, and the ground’s rock hard surface did scrape up my right shin a bit. But when my rolling body came to a stop, I reached for my cane, which I relinquished when I stooped over to break up the garden’s surface, clumsily got back onto my feet, and anxiously looked around to see if there were any witnesses. There were none, and I resumed my task. Ten minutes later I was back inside, free from the sub-freezing temps and whipping winds that made the wind chill feel like it was below zero.

The tumble was fairly benign, and the only souvenirs that remain from the episode is a dime-sized scab on my shin and a bruised ego.

Falling is not uncommon for people with MS, and I am no exception. I don’t fall often, averaging perhaps two or three times a year, but it was not always that way. As I rose from the ground and got back onto my feet that freezing Thanksgiving morning, I couldn’t help but reflect that the reason I usually don’t fall very often, or get injured when I do, is because of body awareness and mechanics.

In what seems like a lifetime ago, I joined our college’s Modern Dance Company at the beginning of my freshman year. I had never been involved in this kind of performance art before, but I liked dancing, and I thought it would achieve two important priorities: meeting girls and becoming more flexible. The first priority is self-explanatory, but I had planned on going out for the varsity baseball team later that spring, and I thought being more limber couldn’t hurt.

One thing that my four-year experience with the company taught me was general body awareness: specifically, how it moves, how it is positioned at all times, and where everything is centered. Our company’s director always used to implore that we “find our center” during the first half hour of each class as we stretched, and the lessons learned from those four years have been invaluable to me on the occasions where I do fall.

After the first few tumbles, which were a complete and unexpected surprise that left physical marks, I realized that I needed to become more aware of how my body was centered at all times, which in turn allowed me to apply those lessons. The results were twofold.  First, the number of  falls dramatically shrank, and when I did fall, I was able to protect myself from serious injury by positioning my body in such a way that I was able to cushion the blow of hitting the ground.

How does it work? I try to be aware of my center, and therefore my balance, whenever I am on my feet. Why? Because if I lose my center, the balance of my weight shifts, which makes my body lean in different directions. When the upper half of my body leans too far forwards, backwards, or to either side, my balance is shot I down I go like a sack of potatoes. Being aware of when I am reaching the point of no return has prevented more falls than I can count, but like last week, they do occasionally occur.

This is where the other part of body mechanic awareness comes in. Before I hit the ground, I try to turn my upper body sideways, exhale, relax the muscles and get into a quasi-fetal position, all within a split second. The goal here is to fall on my side, saving my teeth, facial bones and other joints in the process, in addition to not having the wind knocked out of me when I hit the ground. With the exception of one time many years ago, when I missed the last step on my back stoop with food containers in my hand, I’ve been pretty good at avoiding these kinds of disasters. The back stoop episode occurred during a cookout when my parents were around, and my mother, who had never seen me fall before, nearly freaked when I hit the ground. Nidan, who was maybe ten at the time, thought it was the funniest thing he ever saw, but that is a different story.  That particular crash was the only time I can remember where I wound up with impressive bruises and multiple road-burn type abrasions. It could have been much worse.

I’d rather not fall at all, obviously, but they are inevitable, and when they do occur I would much rather have the fleshier body parts absorb the impact. So far, I’ve managed to avoid anything catastrophic, and hope to keep it that way.

Having said that, all bets are off if you lose balance on the stairs. This has been and always will be my biggest fear, because a soft landing is impossible in that scenario, and it is vital that anyone with balance issues be aware of their body mechanics every time you step ono them, especially when you are going down the stairs. Otherwise, the results could be catastrophic.

This doomsday scenario almost happened to me last August, when I was going down the stairs in the grandstand section at Fenway Park. If you know Fenway, there are at least thirty concrete steps that begin at the top of the grandstands and proceed all the way down to the loge box area.  Instead of taking the longer route, where I would enter the seating area at the bottom of those steps and go up to my seats, I was lazy and decided to take the much shorter route to my seats. This meant I entered my section of the grandstand from the top of the steps and worked my way down to the seats, which were about fifteen steps down.  There are no rails to grab onto for support, and after a couple of steps, my knee locked, my body lurched forward and I felt myself careening forward. I remained upright, but had lost complete control for three or four steps, and understood that in a few seconds a bad scene would unfold.

I remember thinking that this was going to really hurt, that something was going to snap or break, that blood would spill, and I would be humiliated in front of hundreds of people. Fortunately, Zorro, my trusty cane, landed against one of the metal seat legs that was anchored in the concrete. This slowed the momentum to the point where I could grab the top of an empty seat. My hip dug into the corner of that seat with he full weight of my body behind it, which stung like hell, but it stopped the fall, and was infinitely better than hitting those concrete stairs and rolling down God knows how many steps.

My recommendation to those of you who are susceptible to falls is to stay in the moment and be generally aware of your center at all times, which is right around the navel area. If you can keep your weight and balance centered on that point, you won’t fall very often. And if you do, you will be more aware of what is occurring and hopefully be able to position your body so you don’t get hurt when you hit the ground. If you can manage this one time, it will become second nature, and it will go along way in preventing this (or worse):

cast

And please focus on each step whenever you are on the stairs, or avoid them altogether. One of the things I am most looking forward to in the new house is everything is going to be on one floor. That will be one less hazard to deal with.

 

Heat

summer

The summers of my youth were idyllic. I remember family vacations at cottages on the Connecticut shore, where a Good Humor truck was always parked near the boardwalk. Days would be spent frolicking in the water, crabbing, and riding bikes. Twice a week, we’d grab blankets, pillows and snacks shortly before sundown, and trek to the beach to watch a movie. The night air was warm, the sound of the waves gently lapping on the shore was always present, and the sand was filled with chairs and blankets as kids and families gathered to see what was typically a Disney movie. This was Heaven for a ten year old boy.

Days at home during the summer was spent riding bikes all over town, visiting a friend’s house to go swimming in their pool, or playing baseball all day long at one of the large grassy fields near my house. When it wasn’t raining, the only time I was in a house was to have breakfast, lunch, dinner and to sleep.

Summer was, and always has been, my favorite time of the year. The onset of summer vacation from school was wildly anticipated and celebrated, even for those of us who liked school and were good students. Summer days seemed to last forever when I was a kid, and while the new school year always arrived faster than expected, the break felt like a long period of time.

My enthusiasm for the season didn’t diminish when I became a teenager, and had to obtain a summer job. All that meant is I had less time to have fun, but fun was still to be had, and I pursued it with the passion of a religious zealot.

What is there not to like about summer?  It’s much more enjoyable to throw on a t-shirt, shorts and sandals than to bundle up in layers, struggle with a pair of boots, and find places to stash winter gloves or a hat. There are no limits to what you can do in whatever free time you have compared to the cold winter months, when darkness prevails, you’re in hibernation mode, live in sweats, and spend most of any free time you have in front of the boob tube.

Even summer chores are more pleasant. What would you rather do, mow the lawn, tend the garden, and maintain the pool, or scrape ice and shovel/plow snow?

Another thing I loved about summer was the heat. You see, I would always rather sweat than freeze, and there is something about sweating in the summer heat that appeals to the prehistoric recesses in my brain. When I lived in Southern Indiana for several years, the summers were brutally hot and humid. From Memorial to Labor Day, a typical day would involve temps in the 80’s and 90’s with extremely high humidity. I never lived in a place where it would be hotter and more uncomfortable at six in the afternoon than it was at two or three. Being land-locked, the heat would just build and increase throughout the day, which is one of the reasons they had such horrific storms. You could literally walk outside and start sweating so badly you felt as if you were melting.

But I didn’t mind it one bit.

New Englanders can wax poetic about the beauty of our autumns, and feel invigorated by spring, where everything quickly explodes into a lush green after the long winter months, but I will take summers any day of the week.

It is too bad summers don’t like me that much anymore.

I say this as we approach a stretch where we will have a week of 90 to 100 degree weather and high humidity. Once a cause for celebration it instead is a reason for caution because, unfortunately, heat and MS don’t co-exist very well.

Pretend for a minute that your body runs on a battery, which gives you the energy to work, play, move, think, concentrate, or do virtually anything. Food and rest help recharge it on a daily basis, which in turn allows you to function from day to day.

For some reason, heat drains my battery to virtually nothing the longer I’m exposed to it, and I’m not unique. Many, if not most, MS Warriors have this issue. I believe an increase in body temperature is the cause for this power drain, but I don’t know if that is the true clinical reason.

The drain occurs more quickly if I’m active while it is hot, but it has gotten to the point where I can feel a difference by simply sitting outside for an extended period of time. When humidity gets added, the effect is exponentially worse.

Imagine your body feeling completely limp, like every bone is missing. Imagine feeling so weary that the idea of getting out of your chair feels overwhelming. Imagine your  head feels like it weighs one hundred pounds. Imagine your mind feeling like a vast wasteland of emptiness, where the act of thinking feels like a herculean task. Hell, even the idea of sleeping seems like a herculean task. Your focus becomes a narrow pinpoint that centers on the thought that you can’t believe how shitty and utterly spent you feel.

I’m describing a worst-case scenario, but I’ve been there on an occasion or two. Most of the time the feeling is one of significant physical and mental fatigue, and the mental aspect is far worse than the physical.

Some warriors use cooling vests to regulate their body temps during the hot summer months. If I still lived in Southern Indiana I’d probably own several and wear them constantly in order to survive their summers, but they aren’t necessary in my neck of the woods.

My respite from the heat is a pool, which includes a deck and large umbrella that provides a lot of shade. The umbrella cures a lot of sins in terms of the heat from the sun, but nothing can escape the humidity. Nonetheless, immersing myself in the pool provides relief from the heat, and cools my body temperature immediately. It isn’t a perfect solution, because prolonged exposure to the hot sun can still make me feel like the battery is at fifty percent or less, even when I’m in the pool. But it certainly makes life more tolerable, and who doesn’t love the feel of being submerged in comfortable, crystal-clear water on a hot summer day. It brings out the kid in all of us. I especially love to float in a raft where my butt and feet are in the water, my upper body and head is resting comfortably in a semi-upright position, and a cool beverage is secure in the cup container within arm’s reach. It doesn’t get any better than that!

Every winter and summer provides a platform to gauge the pace of my progression. The struggles of maintaining a clear driveway this past winter told me there was a definite progression compared to the previous year. Now, this next week will test the theory from the heat and humidity perspective. How much of a difference will I notice compared to last summer?

When I left the house to drive to work this morning, it already felt like a sauna outside, and the sun hadn’t even risen yet. I know it’s going to feel like an oven for the foreseeable future, but I have stuff to do. So it will be interesting to find out if I feel like a rag doll when the evening rolls around.

I hope not. I don’t mind bitching about the winter, because the winter deserved to be bitched about, but I hate the thought of being a prisoner in my own house during my favorite time of the year. I can live with watching people enjoy themselves from the sidelines. Watching it from the inside is a completely different story.

 

 

 

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.

 

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

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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.

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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.

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.

 

 

 

 

Does It Matter What People Think?

outside world

I wasn’t self-conscious about my “disability” or even thought of myself as having one after I was initially diagnosed. Back then, I moved around pretty easily. I had a slight limp, my balance was only beginning to get a little shaky, and I occasionally stubbed my toe on uneven surfaces due to the foot drop. But I wasn’t using a cane yet, and could still get from point A to point B quickly and in a straight line.

Nonetheless, I obtained a handicapped parking tag. I remember thinking, if I’m going to be saddled with this I may as well get some perk from it. After all, having access to parking spots closest to a building’s entrance was convenient, and I could fall if I rushed, so why the hell not?  Be that as it may, I had not yet entered the stage of being self conscious about my appearance. That changed the day I stepped out of my car to enter a local grocery store, and noticed a disdainful look from an anonymous passer-by that screamed, “why the hell are you parking there, you fraud!”

To be fair, I had never liked seeing someone who I didn’t think was disabled park in a handicapped spot, thinking it was selfish and self-centered. In fact, I never parked in one thinking it was bad karma, and that the Gods would somehow give me a reason to have to park there if I did.

But my vehicle clearly had the tag hanging from the rear view mirror, and I still got that dirty look, one that said “you’re not really sick.”

This self-conscious period didn’t last long because it soon became obvious I had an issue, and I had become so absorbed in what was happening to me that I didn’t give a rat’s ass about how the general public viewed me. Plus, once the shock that someone might actually think of me that way wore off, I soon came to realize I wasn’t the one with a problem, and never gave it another thought.

I remember this now because I’ve read a lot of chatter recently about the how general public’s attitudes and perceptions can make us self conscious about our appearance, and influence our self-esteem. This makes me very sad, and very angry.

So forgive me as I climb on my soapbox for a moment.

Reflecting on all of this has made me wonder what those who don’t know me think when they see me. Do they think less of me? Do they pity me? Does the sight of me make them uncomfortable? Do they notice me at all? Most importantly, do I even care?

Above all, I don’t want anyone’s pity, and I don’t need their sympathy because I’m fine with the way I am. And I don’t take offense if the sight of me makes people uncomfortable, because I think it subconsciously reminds them of their own mortality, which is scary.

And if my disability somehow reduces my status as a person in the eye of the beholder, they are a shallow ignoramus in my book who, in the immortal words of my basic-training drill sergeant, I wouldn’t give the sweat off my balls if they were dying of thirst.

The bottom line is I really don’t care what the outside world thinks, and haven’t for a while. Friends and family are different, but the general public? Nope!  I am who I am, and if that isn’t good enough, tough shit! But………..

It’s easy for me feel this way because I didn’t begin coping with my condition until I was in my late forties. I was well-established career wise, happily married, and wasn’t concerned about a roof over my head or food on the table. I’ve been blessed to have a spouse that is a genuinely nice, loving person, and not once have I worried she would kick me to the curb. My mobility wasn’t significantly impacted until my son was already in his teens, so I never lost the privilege of playing with him when he was young.

I still have my issues, not wanting to be a burden chief among them. I’ve been guilty of doing too much, and not asking for help. Those close to me, and K in particular, are already doing more than they should, and need a break. But I also see the pain and concern in their eyes when they see me struggle, and know they want to help. Maybe it’s because they feel helpless, and need to so something. It made me put myself in their shoes and imagine how I would feel. So my hardest lesson has been to learn it’s okay to ask for help, and show vulnerability, because doing the opposite does not make us closer. It disconnects us.

And since I am firmly entrenched as a middle-aged person – I hate to admit I’m getting old – I have the benefit of a perspective I would not have had in my twenties or early thirties.

I would have freaked out if I was stricken at that age. I’d think of myself as damaged goods, and probably do everything in my power to hide or downplay my symptoms so the opposite sex wouldn’t run and hide. After all, who is going to want to hitch their saddle on a broken horse? Nobody wants to be alone, and we especially don’t want to be alone because of something we never asked for.

That perspective also knows this would have been a fool’s errand, because presenting ourselves as something we aren’t is a betrayal of trust, and only leads to worse heartache down the road.

In a perfect world, everyone would understand that living with the physical burdens of a chronic condition does not change our core. It (hopefully) doesn’t change our personality, our sense of humor, our integrity, or any the things that make us who we are. Those attributes are what is most important, and should be the only reason someone chooses to  like us, love us, be our friends, or want to hang with us. Sure, the packaging is important, but lasting relationships are built on more than that. It’s sad to think this might be lost on some, but it’s sadder to let outside opinions change who we are, and lose ourselves in the process.

So my message, particularly to young adults, is I’m not minimizing that it hurts knowing our condition could influence how a person thinks or feels about us in a less than flattering way. It could also be the deciding factor when considering whether to take a risk and share a life with somebody. This reality is unfair, and can make anyone feel angry, frustrated and hopeless.

But it’s their loss, not ours. It can be a tough pill to swallow, but it shouldn’t change how we feel about ourselves.

 

What The Hell is Happening to Me?!

scream

My response to the treadmill incident was to ignore it. I had no idea what had just happened, instinctively knew it was bad, but my inclination has always been never to worry about something unless I absolutely have to. The episode was short-lived after all and might never return, so why bother?

Two weeks later curiosity got the best of me and I returned to the treadmill, the same thing happened, and I still ignored it.

This ignorant bliss came to a crashing halt several weeks later when I ventured outside to mow the lawn for the first time that spring. I don’t have a big yard, but the house was built on a slope, so the terrain is slanted and the landscaping made the lawn better suited for a push mower. So I grabbed the trusty self-propelled mower, ventured outside and experienced something I will never forget.

I had to stop several times because I lost control of the limb like I did on the treadmill, but it was infinitely worse. I was not on smooth, flat terrain you see, and I rolled the ankle over on three different occasions, once so bad I thought I might have sprained it. When the job was finished, I literally dragged my leg and the lawnmower to the garage. It took much longer for the symptoms to subside, but they did not completely go away this time. I was left with a slightly drooping foot and a very slight but discernible limp.

My bubble had been burst. Fear and panic began to worm their way into my comfortable cocoon of denial, and I wanted to scream. What the hell was happening to me? When I was in the throes of whatever this was, I didn’t have any pain, but the limb simply didn’t function. I didn’t have any point of reference in regards to what this could be, but I knew I had to do something. So I went to an orthopedist.

Tight hamstrings. That was the verdict after I explained the situation and he finished putting me through the paces and examined me, which took only ten minutes. My reaction, although I didn’t say it, was “are you fucking kidding me?” It was humiliating because the guy obviously didn’t have a clue but couldn’t admit it, and probably thought I was a hypochondriac. Being the dumb ass that I was, however, I religiously performed the stretching exercises he gave me for a couple of weeks and it did absolutely nothing in terms of improving my limp or foot drop.

By now I was really beginning to panic. I sensed it was something muscular, and for some reason grasped upon the thought this might be the beginning of Lou Gehrig’s Disease (ALS), which terrified me. I rarely obsess, but could not get this thought out of my head.

By this time, K was becoming concerned as well. I had hidden the entire thing from her until the lawnmower incident, but fessed up afterwards because she could obviously see what was going on. She also tends to worry more than me, so I did not share my ALS concerns because I didn’t want her to go down that rabbit hole.

I knew nothing about neurologists at the time, admitted that I didn’t know what to do, and she suggested I see my chiropractor. After all, he had always helped my occasional lower back issues. Maybe he’d have some insight that more mainstream clinicians didn’t.

So to the chiropractor I went, explained what had happened, including the ortho disaster, and he spent the next hour examining me in a variety of ways. When it was over he said I needed a MRI, and it would provide the answers we were seeking. He also referred me to a neurosurgeon he knew, and told me to make an appointment. I didn’t know it at the time, but he suspected I had a tumor on my spine that needed to come out.

Two weeks later, he called me with the MRI results, explained what they showed, used the term “lesions” and “demylination,”and told me that should I cancel with the neurosurgeon and find a neurologist instead. Afterwards I looked up both terms on the web and saw they were fingerprints of MS.

Although I had not yet been formally diagnosed, in my heart I knew I had MS, and was glad to finally have a name to what was ailing me. Although I knew nothing about the disease, I honestly thought it wasn’t a big deal, and minimized the implications, just like that first time on the treadmill.

What a fool! After I was formally diagnosed and the symptoms became progressively worse, I realized this disease wasn’t to be taken lightly. Once I found the neurologist I’ve been with for about eight years now, I was able to get a handle on it and retard the progression. It obviously has not stopped, but the pace of the progression is nothing compared to those first three years.

Knowing what it was with forced me to plan for a future that had suddenly possessed a lot of uncertainty. But at least I had the keys to the car that would take me down that road.

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