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.

 

 

 

 

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.