Category: MS

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.

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

I’m not sick…I’m healthy impaired

I don’t recall exactly how I came across Billy Mac. It was either through a fellow blogger (probably Grace) or he happened to stumble across one of my posts and liked it, which prompted me to peek at his blog, Superman Can’t Find a Phone, where I read this.  https://goodtobealivetoday.wordpress.com/2018/02/08/hell-what-do-i-know/

I was hooked and have been following him ever since. Billy is a hell of a writer. He’s insightful, brutally honest, self-depreciating, and laugh out loud funny. I love his perspective on people and life, so much so that I extended an invitation to him to grace the pages of my blog with his candor and wit. While I have never met him, although I hope to some day since we both live in New England, I consider him a friend who is among the band of brothers and sisters I have met through the blogging community.

If you have never read his stuff before, please take the time to visit his site and take a look. You will be glad you did.

Thanks for sharing Billy.

 

My name is Billy Mac and I am honored to have been asked by Steve to guest post on his blog. Steve is an excellent writer and a supportive member of our blogosphere and I am happy to have discovered his little corner of the internet. We faithfully read each other’s work, share experiences and there is always a positive takeaway from our back and forth. Although it tends to break convention, I think of him as a friend though we have never met in person. He’s a good guy with a great story.

As with most connections, the question may be asked: “How did you and Steve find each other?” The answer is simple, we have a common connection, and that is Chronic Illness. Steve has MS, did I mention that? Steve’s blog is about the trials and travails of living with MS, it’s right there in the title. I didn’t lead with it because it’s only a part of who and what he is.

As a relative newcomer to the Chronic Illness community (I’ve actually had Kidney Disease for decades, but I only just accepted it on, what time is it? Yea, not that long ago) I am drawn to, and consequently follow many Chronic Illness bloggers. Many of these blogs were initiated by people like Steve and I, who have a condition that has affected our lives so profoundly that we want to share it, to inform others of it, or just reap the cathartic benefits of “putting it out there” to a world of anonymous, faceless strangers to read. Many bloggers with Chronic Illness are considered fine resources for their respective conditions with personal expertise in symptom management, links to journals, studies, and news updates. But if one were to bypass reading a blog because it is tagged “Chronic Illness” you would be passing on a great opportunity. I liken it to watching the evening news, seeing a teaser about a positive, uplifting human interest story and then changing the channel. You’re missing out. They tell a great story.

Sure, we write about our illnesses. But not exclusively. We write about our lives in all of its mundane details. We have jobs, we have families, we have social lives and we write about them just like everyone else. The twist of lemon, the ingredient that makes these blogs special is how our conditions impact, shape and affect us as we live our lives.  For example, Steve recently posted about the Blizzard that he (and I) had to clean up after last week. He told us about the ordeal of shoveling all of the snow. No big deal, right? Not really, until you remember that Steve has MS and that not only is he prone to fatigue but he has recently dealt with the minor nuisance of one of his legs simply giving out unexpectedly. It’s just another symptom to Steve, one more challenge in his daily life. But to the reader, his shoveling of snow just graduated from an ordinary chore to a goddamn human interest story. You will find such examples of illness permeating the everyday lives of normal people in all of these blogs. It’s easy to call them inspirational. They are, but at the end of the day, they are just regular people living their lives and not giving in to the challenges their illness throws at them. The resilience of the human spirit simply leaps off of the pages as they write.They are defining their situation before it defines them.

I am the author of Superman can’t find a phone booth and I”m a great story. I’m a great story only because I’m looking down at the dirt and not up. You may wonder where the Moniker of Superman came from. I assure you that it’s not born of inflated self-image. It is instead a very unflattering nickname sarcastically bestowed upon me by a loved one in recognition of my Superhuman ability to deny my illness. I was sick for decades but I didn’t take it seriously. I put on a good face for my family (to not worry my kids) and I dealt with my symptoms. My doctors said that I was in denial, they would later say that it worked for me. On the verge of dialysis, I received the best gift anyone could ever give, the gift of an organ donation. I had a kidney transplant and went on with my life. Then, out of the blue, the new kidney began to fail. And here I am, at the end of a long, downward spiral. I named my blog Superman can’t find a phone booth because I see myself as a strong person on the inside but without an outlet to express and release my inner self. With no phone booths in sight, I turned to the blog. Despite losing my house, my family and my career to my disease, I now find myself in a good place. With nowhere to go but up, I have a whole new outlook that I am sharing with anyone who visits my blog. I have accepted my illness and I am embracing the changes that I and my fellow bloggers with an illness are experiencing. I am part of a community. One that understands me, supports me and has watched me grow. I, in turn, support my peers and monitor their growth.

What are the takeaways from immersing yourself in the daily life of one with a chronic illness?

Here are some of mine:
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“You either get busy living, or get busy dying”
Andy Dufresne, The Shawshank Redemption

Be grateful.A dear friend of mine, who also has MS once told me that having MS was a blessing of sorts. I initially rejected this notion but I have come around. It has taught her, and myself, to be among other things grateful. Grateful to be alive, to be in a position to be a resource or maybe even an inspiration to another, grateful to understand the value of things that others take for granted.

Every day of your life matters. My doctor recently told me that I, with the help of modern medicine, may live 20 more years. The clock is ticking. This makes sitting around doing nothing a massive waste of precious time. No matter what I am capable of doing today, it is unacceptable to do nothing. Set goals, try to reach them. Better to reach for the stars and drag your feet on the rooftop than to reach for the ceiling and drag your feet on the floor.

Do something with your life. I would rather live 60 fulfilling years than live to 92 and have done shit with my life. Imagine yourself as a fly on the wall of your own funeral. What will people say about you? How many people will show up? Will you be remembered as a burden or an inspiration? Did you die the friend, husband, wife, son, daughter, co-worker and citizen you envisioned yourself to be? Write your own eulogy daily by cementing your legacy in every transaction.
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Leave nothing on the table. This is not just for the chronically ill. Some of us have a fast-moving Chevy meant for us. Don’t wait for tomorrow to do what you can do today. Make that call, take that road trip, pretend that “rainy day” is today. Tell people how you feel and leave them as if you’re never going to see them again. Talking to their stones simply sucks, granite can’t talk back. Everyone in my life knows what they mean to me.

Enjoy the moment. When you have your own mortality on your mind, even shoveling snow can be a moment. While I was shoveling snow last week I stopped to take a break. My heart was racing and my back hurt. As I collected myself I looked around and took a deep breath and truly absorbed my surroundings. It was a beautiful day, I wasn’t cold and it occurred to me that I didn’t have an unlimited amount of these moments, so I breathed it in and savored it.

Be your own advocate, but believe in hope. With advances in modern medicine, there is a potential cure for every disease, and I really hope for one for everybody involved. Steve has written extensively about being your own advocate, knowing your condition and learn all that you can about your condition. Sometimes doctors get it wrong. When I had my transplant, I was given a lot of information of what to expect. I was not told that my disease could potentially attack my new kidney and put me back to square one. Well, that is exactly what happened a mere 5 years after my surgery. I was furious at first, I felt like I was given false hope. But then I reflected on what I accomplished after my transplant. I attacked life. I rode a mountain bike and crashed it gloriously time and time again, every time I got up and kept riding. I hiked, I worked out, I treated my body like I wanted to live forever. If my doctors had told me about the potential to lost it all, I may not have done any of it.

Don’t focus on the “used to’s”. The “used to’s” are a major downer for the chronically ill. It is tough to reflect on what you used to be able to do before that you can’t do now. It is a reality we have to contend with. But at the end of the day, it’s dangerous thinking. Focus on what you can do today and do it well. When you can’t, you will deal with it.

Deal with it. At the end of the day, it comes down to one thing, how well you deal with what life throws at you. Some people out there clear some pretty major hurdles in street shoes just to get through a Tuesday afternoon. When I wake up and I only have brain fog, nausea, leg cramps and fatigue from waking up 10 times the night before it’s a good day. And that is nothing compared to the struggles of some.

Chronic illness has changed who I am. I am not only a different person, I am a better person. I listen more than I talk. I appreciate more than I criticize. I do more and procrastinate less. In the time since I started blogging, I have grown from a state of despondency to one of purpose. I think I am where I belong. I am working less and volunteering more. Wanting less and receiving greater rewards. In the process of downsizing I have achieved the real, the quality I have been searching for in my life. The prospect of death has improved my mortal campaign. I don’t fear death anymore. But I am simply terrified of the prospect of not living a full life.

One of my favorite quotes is “Be kind, for everyone you meet is fighting a hard battle.”
As a firm believer in this and an avid people watcher, I always look at a person and wonder what their life is like. But like most, I can’t always tell who is struggling and who isn’t. That’s why you’re encouraged to be nice in the first place…you don’t know. But if you had a way of finding out wouldn’t you want to know their story, maybe find a little inspiration? Something to make your own problems a little more ordinary? You can. Just by going to WP reader and punching in “Chronic illness”. You will have at your disposal as many “human interest stories” that you can handle.

We don’t want pity or sympathy, we just want our stories to be heard. What you take away from them….well, that’s up to you.

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.

 

 

 

 

The Final Straw?

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Blizzard Brody visited our state back in December, but in hindsight it was a Blizzard in name only.  Yes it snowed, but the snowfall was not intense. Yes it was windy, but no power was lost and no trees were damaged. We’ve had some cold snaps since that storm, and a few snow events, but nothing cringe-worthy. Other than the fact that we’re into March and everyone is sick of winter, it’s been a pretty tame one.

Two days ago the talking heads started hyping winter storm Edna, and people overreacted as usual. Gas stations had lines going into them, and grocery stores were being wiped clean. You see, this storm was allegedly going to dump a bunch of wet, heavy snow on the region and pack winds that could cause damage. Heart attack snow, as the guy who does most of my driveway calls it.

Accumulation predictions had grown, which got my attention, but that was mostly for the Northwest Hills. Nonetheless, I decided to work from home yesterday. After all, even though we could get 6 to 12 inches when it was over, who wants to commute in that shit? According to the forecast, the snow would start around seven in the morning, intensify by ten, and conclude by ten in the evening.  When seven in the morning rolled around, it was cloudy and dry. By ten, there was a light rain falling.

The southeastern part of the state was supposed to get most of the rain and not a lot of snow. Maybe 3-4 inches. So when it started raining, I figured the storm’s track had moved. When I finished my work later in the afternoon, it was still drizzling. A few fat flakes would occasionally mix in, but nothing was coating the roads or ground.

I breathed a sigh of relief because my son, who I will refer to as Shodan, had a heavy cold and K was battling a nasty sinus infection. I was two days removed from a stomach virus myself, so I was more than happy that the weathermen screwed up yet another forecast and I wouldn’t have to worry about snow removal that night.

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Less than an hour later there were white-out conditions, and it remained that way for another seven hours. Knowing this stuff was going to be saturated with water and heavy as hell, I decided to remove the snow in stages because the last thing I wanted was to remove maybe a foot of wet heavy snow all at once. My not so big blower wouldn’t be able to handle that, which meant a lot of shovel work would be required, which was simply not going to happen.

Little did I know, Edna, which was not a blizzard, would put Brody to shame. Eighteen inches of snow fell over a six or seven hour period, so you do the math regarding how heavy it was coming down. The pictures you see here don’t do the storm justice because about a third of the snow had melted by the time I took them.

The first time I went out with the blower (Shodan had already taken a shower and was down for the count) four inches had already accumulated, and it took two hours to remove it from the section of the driveway the plow guy can’t reach, in addition to the front and back sidewalks.

After I came in and collapsed on the recliner for rest in front of the telly, I reluctantly ventured out back for the next go around and there was an additional eight inches on the ground. It was at that point I knew this storm was trouble. The wind was howling, the snow was coming down sideways, and at one point, a clap of thunder erupted and a flash of lightning whited everything out, scaring the hell out of me in the process.

When I was out there, my ankle was constantly bending, and it almost got to the point where I was walking on the side of the ankle instead of the bottom of my foot. The entire leg was so weak I could barely move it, and my good leg was screaming because it had to compensate for the compromised one. The back and hamstrings weren’t pleased either.

At one point, the bolt assembly that holds blower handle was loose, which I didn’t know, and became dislodged. Half the handle was in my hand, and I could not control the blower, which was slowly rolling down a small decline, and I had to hurry to keep pace with it before it came to rest in a snow bank. How I remained upright is beyond me. I was not happy, said every bad word I know, and made up a few in the process, for a solid minute.

The immediate issue was to find the bolt and screw because if I didn’t, they would get buried in the snow and perhaps lost forever, rendering the blower useless. So I got on my hands and knees, which was a chore, strained my eyes and blindly ran my gloved hands across the driveway surface in a raging snowstorm, hoping to see or find something that looked or felt like a long bolt and large hand screw. Fortunately, this happened quickly. Now that the “easy” part was over, I had to get back on my feet.

The first two attempts failed, so I literally crawled on my hands and knees to a car that was parked nearby, pull myself up, reassembled the handle, and get back to work. Round two took almost three hours and I didn’t even attempt the sidewalks.

When I was done, it was still snowing, and my leg wouldn’t move at all. I literally dragged it behind me until I got inside, laboriously removed the boots, knee brace, the AFO brace, which actually turned out to be a detriment, then peeled off a saturated coat, hat, gloves, scarf, snow pants, sweats and undergarments in a heap onto towel laid on the floor. I trudged up those long stairs, took a shower, gingerly headed back downstairs to the kitchen and poured myself a whiskey (no ice). It was close to 11pm, and sipped my drink in the quiet stillness.

Thoughts were swirling in my head: I can’t do this anymore, I don’t want to do this anymore, I can’t physically do this anymore, and I am so tired of dealing with this.

As stubborn as I am, and as much as I try not to give into this disability, I’m not stupid, and some things can’t be ignored. Storm Edna was a cold slap in the face in that regard. Twenty minutes later I fell into bed, my body ached from head to toe, and quickly fell asleep.

To add insult to injury, we lost power early this morning. My birthday morning. Not that I was surprised. The snow had coated all the tree limbs like a coating of white wax. It was a pretty spectacular sight actually, but all the limbs were bending terribly and you knew some would eventually snap. And snap they did. Over 40% of our town lost power, but ours fortunately came back on about a half hour ago. At least I’ll be warm tonight, be able to enjoy a hot meal and take a comfortable shower.

Still, the sidewalks and the snow that fell after I came in for the night had to be removed. It was a piece of cake by comparison, but I ache all over,

So now this whole moving thing becomes serious, not that is wasn’t before, because I don’t want to go through this again next winter. The need is more urgent with no solution in sight.  Maybe we’ll have to reassess out priorities. The easiest and most practical thing to do is move into one of those over 55 communities where all the outside stuff is taken care of, but I hate that idea. Plus they aren’t cheap and I would still have to make the interior ADA compliant.

There isn’t any land available in the section of town we want that has city water, so does that mean we need to look at neighboring towns? Don’t really like that option either. But something might have to give because that clicking clock has suddenly become very loud.

Meanwhile, I will enjoy the rest of my birthday and pray like hell that the next coastal storm/nor’easter that is forecast for Monday is a total rain event. I can’t take another yesterday.

 

 

 

 

 

Think Getting Published is Easy?

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I’ve written a novel. The main character has MS (big surprise), but that’s only a subplot to the story, which is about self-discovery, perseverance, family, friendship, love and redemption.

I never intended to be an author, and how I came to write this is a long story in itself, but I enjoyed the process, had the assistance of an editor along the way, and I think the end product is pretty good. Most of the people who have read it certainly think so. Who knows? Maybe this can become a second career if working regular hours in an office  becomes impossible. A guy can dream, can’t he?

But I have to get one little detail out of the way, which is getting the damn thing published, and I don’t mean self-publishing. When I finally got the manuscript finished after so many edits and revisions I lost count (at least twenty of them), I figured the hard part was over. Little did I know.

I assumed all that needed to be done was to send the manuscript out to hundreds of publishers, who would see how brilliantly I write, and fall all over themselves trying to sign me. My literary agent, who has been in the business forever and whom I trust, quickly disabused me of that idea. In today’s competitive environment, you need more than talent. You need a social media presence.

Oh shit!

Just hearing the term “social media” makes me cringe, primarily because I never believed in it, didn’t have time for it, and didn’t want to be bothered with it. E-mail and texting was more than enough for me. Unfortunately, social media numbers are necessary because the assumption is you have a built-in network to market the book to. So whether I liked it or not, I had to jump on the bandwagon. And until a few days ago, I thought I did.

The laundry list of things I needed to accomplish when this odious chore was first presented made my sphincter pucker. I needed to max out the number of friends allowed on Facebook, which is 5,000. At the time I had less than 100. This took me the better part of three months to accomplish.

But that wasn’t enough. More was required, the list of options long, and starting a blog was the least objectionable of the choices. That, dear followers, is how this blog got started. Not that I have any regrets. I enjoy doing this and have met some fun and interesting people along the way.

I also needed at least five endorsements from published authors, which took as long as it did to achieve 5,000 friends.

Those three accomplishments got me to the point where I could sit down with my agent and hopefully move forward on the publishing front. That meeting occurred on Wednesday, and the good news is that we are going to actually start the process. YAY! 

The not so good news is getting started means I also have to create a web site (ka-ching!), and get my Linkedin presence more robust than Facebook. By the way, Linkedin does not have a follower limit, so I presume I’m looking at having to get in the 10,000 range. I currently have 103. And while all that is going on, I need to get started with Instagram.

In addition to this, a marketing plan that can be sent to publishers along with the manuscript needs to be developed, which demonstrates how wonderfully connected I am, shows all the writing groups I am affiliated with, and lists more endorsements than I currently have. That presumably will occur once the web-site, Linkedin and Instagram are in full gear, along with Facebook. Getting the blog numbers up would also be helpful.

I walked out of that meeting with mixed feelings. I was happy that we are going to actually move forward with this, but all the other stuff? It’s completely foreign to me. I think I will become enthusiastic and have fun once I get into it, but right now it feels like I’m sitting in the dentist’s office waiting for a root canal.

I know my agent is right, because once it does (hopefully) get published, the foundation to market, sell and get the word out will be in place, and the news hopefully spreads like a virus.

Still, all of this for a freaking book? If I’m going to go invest all this time, money and aggravation to get the platform up and going, it sure as hell means I’m going to have to write more stories. Otherwise, what’s the point?

Wish me luck.

 

Does It Matter What People Think?

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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?!

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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.