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.

Is it Me?

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It is me, or do people you don’t know very well say “I’m sorry” if they ask what is wrong with (fill in the blank – with me it is my leg) and you tell them you have MS?

Is it me, or do the “I’m sorry” people end the conversation immediately, and try to discreetly move away as quickly as possible?

Is is me, or do you find all that annoying?

Is it me, or are more non disabled people using the handicapped toilets in public restrooms? Boy, does that piss me off (no pun intended). And when did being a large person become a disability?

And speaking of bathrooms, is it me, or does it seem like you are as far away as possible from the nearest bathroom when you need one and are at work or in a public place?

Is it me, or do more non-disabled people park in handicapped parking spaces than before? Either that or I happen to notice it more because when it does happen, the next available spot is a long walk from where I need to go.

Is it me, or do you hate the term “handicapped”?

Is is me, or do you have a greater awareness of other people who have a disability of some kind? I sure hope it isn’t because there are more of us than ever before.

And speaking of awareness, is it me, or are you more aware of your surroundings since you were diagnosed? I have to be, especially when there are a lot of people around, because one mistimed bump or stray cord laying across a floor might create an embarrassing fall.

Is it me, or do you find people going out of their way to open a door for you in a public place?

Is it me, or does that annoy you? Listen, I appreciate the motivation behind the gesture, and there are times, like when my hands are full, that I am happy for the help. But I’m not an invalid, and like to fend for myself most of the time. Is that being overly sensitive?

Is it me, or are you paying a lot more attention to healthcare politics than ever before?

Is it me, or are you more aware of your insurance benefits, and all the rules and regulations regarding getting services approved for payment, than before you were diagnosed? (Confession: this is a cheat question because in my line of work I have to know all this stuff. But I need to fill the page, and thought it was an appropriate question.)

Is it me, or do your parents (if they are still alive, or were alive after you were diagnosed) treat you like a little kid because of your disability?

It is me, or has your diet become a lot more important than it used to?

It is me, or does your body ache more when you get out of bed in the morning than it did when you went to sleep the previous night?

Is it me, or has the amount of medication you’re taking increased exponentially since you were diagnosed?

Is it me, or do you not bother to read all the literature that comes with those drugs? I typically don’t, and never have, because reading it can make you think the stuff you are about to take will cause something a lot worse than what you have. Aren’t lawyers wonderful?

Is it me, or do you not fully understand why some of the stuff you are taking is supposed to work?

Is it me, or do you discover that the stuff you are taking actually does work, but only after you stop taking it?

Is it me, or does it seem that most, if not all, of the options available to ease your symptoms involve pharmaceuticals?

Is it me, or do you appreciate friends and family more since you were diagnosed?

Is it me, or are there a lot of things you used to fret over that are no longer important?

Is it me, or did you begin thinking about your mortality much sooner than you could have imagined?

Is it me, or did going to the bathroom become a much bigger production than you thought possible?

Is it me, or did going down the stairs become potentially life-threatening?

Is is me, or does the same thing apply to taking a shower?

And since we are on the subject of hygiene, is it me, or can you no longer wash the bottom of your feet?

And, is it me, or do you not even think about taking a bath anymore because you won’t be able to get out by yourself? Or because of what the heat of the warm water might do to your symptoms?

Is it me, or is condo-living starting to sound pretty good?

Is it me, or has walking on a snow covered sidewalk, driveway, or parking lot, become like walking on a tight-rope, or in a minefield?

Is it me, or do you only fall when you aren’t paying attention?

Is it me, or do you want to crawl into a hole and disappear when this happens in public?

Is it me, or can you gain weight more easily than you used to?

Is it me, or do steroids make you ravenous?

Is it me, or do you bleed more easily from all the drugs you take?

Is it me, or were you resistant in the beginning to accept help because of the misguided notion that you would be giving up your independence?

Is it me, or has that shit stopped?

Is it me, or do you think that your spouse and kids were somehow cheated because of your disability?

Is it me, or do you feel profoundly guilty that you can’t do as much around the house as you used to, and your spouse/family have to pick up your slack?

Is it me, or are you doing more than you probably should because you try to minimize the slack they have to pick up?

Is it me, or has daily life become a lot more expensive since you were diagnosed?

Is it me, or do hallways seem overcrowded when another person enters your space?

Is it me or do you no longer walk in the middle of a hallway? I’m always off to the right side, hopefully with a handrail or a wall within easy reach.

Is it me, or are airports a lot more intimidating?

Is it me, or does it take you longer than thirty seconds to get into a vehicle?

Is it me, or do you avoid support groups. I think I don’t go to them because I don’t believe I’m that bad off, and seeing others who are would scare the hell out of me. It’s that denial thing I keep talking about. Who knows, maybe I’d be pleasantly surprised.

Is it me, or did you become a expert on all matters related to MS within a very short period of time?

Is it me, or isn’t a lot or this really comical?

Is it me, or doesn’t a lot of this really, REALLY suck?!

 

FYI: One of my readers, whose mother has progressive MS, started a company, in part to  help her mom stay independent and as safe as she possibly could, with help, of course. She sent me a link ( http://www.helpmedicaldevices.com ) to the company. I checked it out. While it lists a lot of stuff that might be better suited for frail seniors, there is also a lot on the site that people with MS-related mobility issues could find helpful, so I thought I would pass it along.

 

 

 

Diet: Crossing the Rubicon

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I need to lose weight.

For the last several weeks, I have been trying to watch what I eat, and this got me thinking about MS diets. Shortly after I was diagnosed, I asked a naturopath if she had any recommendations regarding a diet that was good for MS, and she responded by handing me a piece of paper that had a number of recommendations.

Among those was that I eliminate all milk and dairy from my diet, most breads and grains, all red meat, and high fat foods, meaning snacks. Alcohol was frowned upon as well. It was so onerous and restrictive that I tossed it in the garbage because there was no way in the world I was going to subject myself to that.

Back then, I was still fairly mobile and active. I was happy with my weight and was in fairly good shape. I already ate a lot of fruits and vegetables, which was strongly recommended, didn’t eat a lot of red meat or a lot of high-fat foods, and wasn’t a big bread guy. As far as I was concerned, my diet followed a lot of what that sheet of paper recommended, so why bother with anything new?

Now, as I’ve gotten older and have become less active, what I eat has become more important. Not because of my symptoms or progression, but because it takes much more effort to drag this carcass around than it used to. So losing a few pounds to lighten the load makes all the sense in the world.

I’m not large by any means, but the sad reality is that the numbers staring up at me from the scale have gotten uglier, are getting close to a number I can not tolerate, and my clothes have become a tad snug. It feels like I’m trying to fit seven pounds of sugar into a five pound bag, and I don’t like that. I also hate the idea of having to buy more clothes because I don’t have the willpower change this situation, and that is usually all the motivation I need to start losing weight.

But I digress.  It has been many years since I discarded that sheet of paper, so before I took the weight loss pledge, I went back on line out of curiosity to see what kind of MS diets exist, and whether any of them would help me lose weight and help my symptoms in the process. While I am sure what follows is not an exclusive list, this is what I found:

The Paleolithic (Paleo) Diet:  A high protein, high fiber diet, similar to those of our prehistoric ancestors, which is why this is also known as the Caveman Diet. I’m not a huge protein guy, so let’s see if there is better fit.

Wahls Diet: Contains some of the Paleo diet, but eliminates all grains, legumes, dairy and eggs. Not for me.

Gluten Free Diet: I think this one is pretty well-known and self-explanatory. We’ll just move onto the next one because I’m not ready to go there.

The Swank Diet: A low fat diet that eliminates all red meat. I don’t think so.

Mediterranean Diet: A low fat diet that emphasizes fruits and vegetables, monounsaturated fats (like olive oil), fish, beans, nuts and whole grains (foods rich in omega 3 fatty acids), limited amounts of red wine and dairy. Now here is something I could easily do, primarily because I already follow most of this, except for the fish part. But will it help me lose weight?

As I was looking this stuff up, I noticed a link that listed seven foods someone with MS should avoid. Those were: Saturated and Trans Fats (thanks for being specific) cow’s milk, sugar, sodium, gluten and refined grains. Bland, bland, bland.

To complicate matters further, information provided by the National MS Society (see https://www.nationalmssociety.org/Research/Research-News-Progress/Diet ) implied that many of the recommendations I’ve already shared are either scientifically inconclusive, or that more research is needed.

As you can see, one diet says do this, and another says no, don’t do that. They contradict one another, so no perfect “MS Diet” exists, which shouldn’t be surprising. After all, while we may experience similar things, everyone different is in terms of our symptoms and progression. Certain drugs work better for some than for others, and I am sure the same applies to diets.

Besides, diet is only one component of a comprehensive health regiment we need to embrace. Getting enough sleep, regular exercise, not smoking and avoiding stress (more on that in a future post) are equally important.

I fail miserably on the sleep front. I wake up too early in the morning, and go to bed too late at night. It is almost 10:15 PM as I’m writing this, and my alarm is set for 4:45 AM. You can do the math, and this is a typical weekday evening for me.  The weekends are better, but don’t compensate for the 5 to 6 hours I get most weeknights. I get scolded a lot for this egregious habit, but this is a routine I developed a long time ago, and habits are hard to break.

Ditto for regular exercise. I have a wonderful piece of exercise equipment in my cellar that I spent big bucks on a few years ago, because it was the only item that would work my entire body that I could actually use. I did use it frequently in the beginning, but that routine was soon interrupted for some unimportant reason, and I have never gotten back onto the wagon.

I don’t smoke, so at least I’m doing something right.  Some will say that I shouldn’t drink either, especially when you consider the IV chemo drugs I’ve taken over the years to slow the progression. Those can do a number on your liver, the argument goes, so why compound it with alcohol? I don’t happen to see it that way because MS has deprived me of a number of things I enjoy, so this is one thing I will continue. In moderation, of course.

See how I’ve strayed off the subject of me needing to lose weight? That’s because this time around, I’m having a really hard time shedding pounds. Ten pounds is my goal, and fifteen would be ideal. This shouldn’t be hard, because the last three times I’ve committed to dieting, I lost 1 to 2 pounds a week on average. So far, I have lost a whopping two pounds in five weeks. BFD.

I know what I’m doing wrong. First, I need to stop snacking at night. But it seems the only way I can do that is to go to bed early, because I can’t eat if I’m sleeping. This would also provide the added bonus of  getting more sleep each night. My problem is that I like to unwind in front of the television at night, usually watching the Red Sox (who are really pissing me off at the moment) which lends itself to craving something salty to eat. Also, I don’t think I’m over-indulging as far as snacks are concerned, and I tend to crunch on items that are low-fat or low on Weight Watcher points (my diet of choice). Unfortunately the scale says otherwise, although it isn’t as if the numbers keep climbing. They just aren’t moving.

Number two, I need to, as my father was fond of saying, get off my dead ass and onto my dying feet, and reintroduce myself to the recumbent exercise machine. It will help my overall fitness, muscle tone, cardiovascular system, and mitigate the fallout from snacking. All I need to do is take that first step and start a routine, because I am a creature of habit, and routine becomes habit. Seems simple, doesn’t it?

The third thing I should do is eliminate alcohol for a while. Not because I drink a lot (I don’t) or because it’s healthier for me or better for my MS (which could be true), but because it puts weight on me faster than anything else. Wine, beer or the hard stuff goes to my waist line faster than salami, pepperoni, cheese or anything like that. Plus, when I do have something to drink, it tends to make me want to eat something. Funny how that works.

All of this makes perfect sense. These three simple things are interlocking pieces of a weight loss puzzle that fit together seamlessly and will provide the result I desire.  Unfortunately, the spirit is willing, but the flesh is weak. Do I  have to reach a point where I am completely disgusted with myself before I kick things into gear?  Let’s hope not.

I just need to get my shit together, do what I need to do and stay the course. There is no question in my mind that doing so will get me to where I want to be in two to three months. Then the problem becomes maintaining it, which is a completely different animal.

But let’s cross that bridge when we get there. Meanwhile, wish me luck.

 

The Indignities of MS

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MS is humbling because it makes you less than whole physically. My philosophy has always been that it is what it is, and to roll with the punches. Some of my symptoms are obvious to anyone who sees me, some are not, some of them piss me off, while I have to laugh at others because you can’t make this stuff up.

The most obvious of these is the way I walk. My gait, if you want to call it that, is slow, ponderous, and spastic. How slow? Let’ s use a driving analogy.

Imagine you are cruising in a convertible on a picturesque summer afternoon, enjoying the sights on a lovely country road at the posted 50 MPH speed limit. After navigating a bend in the road, you suddenly have to hit your brakes because some asshole in a junky car that is leaking oil and spewing noxious smoke, is puttering along at 30 MPH. You can’t pass the car because it is weaving from side to side, and sometimes crosses the double yellow line. You curse out loud because that idiot has just ruined your vibe.

Well, that idiot would be me. I am simply incapable of walking with any pace. If I try, I will most likely wind up flat on my face. I have to concentrate with every step I take, particularly at work, because if I don’t, I could wind up in a crumpled heap.

When most people walk, their legs stride forward and backwards in a straight line, and when they plant their feet, the toes are pointing straight ahead at twelve o’clock. We take our mobility for granted, and don’t even think about the mechanics of it. My affected leg does not move straight ahead. It moves in a semi-circular motion. I use my hip to help swing it around and forward. When I plant my foot, it isn’t pointing straight at twelve o’clock either. It’s more like two o’clock.

In addition to this, my foot droops like a wet dish rag. At first the foot drop was minimal, and I could curl my toes upward to prevent stubbing my toes. Now I have a hard time doing even that, and I just don’t stub the toes anymore. Sometime it’s the ball of my foot that gets stuck. Walking outdoors in bare feet is risky, particularly if I am walking on blacktop or a sidewalk, because if I am not paying attention and taking it slow, I will drag my toes and peel the skin off in the process. That has happened on many occasions.

I am sure that anyone who doesn’t know me, and sees me coming or going, must wonder “what the hell is wrong with that guy?” If I didn’t use a cane, they would probably think I was wasted on something.  If I were to ever get picked up for speeding, and was asked to walk a straight line, I’m sure the authorities would think I was drunk as a skunk because I never walk in a straight line, even with a cane. My house is on a slanted piece of property and is hilly in spots. If I walk out back to my pool deck and don’t have my cane, my arms sometimes flail out to keep my balance against the slant of the hill. It must be a site to behold.

Falling anywhere is embarrassing, even when there is no one around. But having it occur in public is the ultimate humiliation. This has happened twice. Once was in an airport concourse several years ago, where I was in a rush to reach my connecting plane because of a late arrival. The second time occurred early this year. We were looking at a college, I was in an unfamiliar room, and had to get to a bathroom (more on that later). Rather than navigate through a crowd that was substantial, I took a shortcut to circle around the assembled masses. Unfortunately, there was a single step along my route that I did not see. My foot hit the base of the step, and I fell like a cut tree. My cane couldn’t save me either time.

Nothing but my pride was hurt in either case, and in both cases adrenaline must have kicked in because I bounded upright as soon as I hit the ground, walking away like nothing happened with hardly a limp. I wish I could bottle that stuff! Getting away without a fuss didn’t work at the airport, as personnel swarmed from unseen places to make sure I was okay, and insisted they escort me to where I was going via a wheelchair. At least I made it to the gate with time to spare.

The one thing I have learned by these mishaps is the public does not not handle the site of a grown man falling down very well.

I always assess my surroundings, and take note of where the walls are, or where there might be something to lean or grab onto. That’s because there are even times when I have a cane, and am paying attention, that I trip myself up. You see, my balance is terrible, and if I don’t maintain my center of gravity, I will crumble.

Sometimes at home, when I’m standing up and not using my cane, I put too much weight on my right leg and my ankle bends painfully. There are also times when I am walking and my knee doesn’t bend at all. When that happens, it feels like the leg will bend backwards.  So having something nearby to grab onto or use as a brace is important.

One other casualty of my MS concerns bodily functions. Bluntly put, if I have to go, or feel the urge coming, I need to act immediately because my ability to hold things is shot. You see, I can’t clench and walk at the same time. When you think about it, this poses a real dilemma.  I can mitigate this a little by wearing absorbent pads and having a urinal in a car, but at some point the dam will break. And there isn’t anything you can do to hide a number 2 mishap, so it is better not to even try to tempt fate. Fortunately neither of these have occurred, but I always make a point of learning where the restrooms are when I’m in a strange place.

On several occasions, I have had to use the woman’s restroom (the single toilet kind) because I was desperate and nothing else was available. I’ve often wondered how commonplace this might be among people with MS. One of those times, someone was waiting outside the door as I emerged. I got a strange look, but ignored it, held my head high, and walked away as if nothing happened. Better to be embarrassed that way than the other.

There are a number of other little things. Since I have a hard time suppressing the need to go to the bathroom, it shouldn’t come as a surprise that this also applies to flatulence. So, on occasion, I toot when I walk, and sometimes something will unexpectedly sneak out when I am among a group people. When that happens around people I don’t know very well, I try to make a quick escape because I don’t want to see the look on anyone’s face if a fragrant aroma emerges. I might break out laughing.

I can’t wash my feet in the shower, and I have a hard time putting anything on or taking anything off my right foot. As a matter of fact, putting any type of clothing from the waist down is hard, any it takes me a lot longer to dress than it used to. I can’t stop on a dime, so if someone cuts in front of me or gets in my way while I am walking, I get up close and personal with them.

I can’t stand in place for sustained periods of time, and turning from my back onto my left side when I’m in bed is impossible without grabbing onto the mattress to help pull myself over. Walking on a sandy beach is cumbersome because my foot keeps getting stuck in the sand. I REALLY have to be careful going down the stairs, because if I miss a step, or my knee doesn’t bend and I lurch forward, I could literally fall and kill myself. I therefore make sure one hand is grabbing a handrail at all times.

It isn’t all bad though. I get the primo parking spaces, compliments of the handicap tag I have hanging on the rear view mirror, and I am one of the first onto any plane I fly. I consider myself independent because, God forbid, if I found myself on my own, I know I can still take care of myself. But the truth is I can’t do many of the stereotypical “man things” husbands and fathers normally do around the house or with their kids, and I am much more dependent on my family and people in general.

And that is the greatest indignity of all.

 

 

 

 

 

Attitude

sunset-summer-golden-hour-paul-filitchkin

I just finished reading a post on a blog called Fuck MS (you should check it out, by the way). When I saw the title I smiled and laughed, because that has been my attitude from day one. And when your are dealing with an illness or disability, attitude is everything.

When my body began to go haywire ten years ago, I knew something was wrong, but everybody I went to couldn’t give it a name, which was frustrating. As the process to figure out what this was continued, my imagination ran wild, and not in a good way. When my MRI came back and I learned it was MS, the verdict actually came as a relief. That sounds silly now, but when you think it might be something like ALS, Multiple Sclerosis isn’t bad by comparison.

Then shit started happening, and the slow erosion of my mobility commenced. Through it all, my reaction to each hurdle that presented itself was annoyance and defiance, not sadness or despair. I certainly wasn’t happy that my leg started feeling like an overcooked strand of spaghetti, but pissing and moaning about it wasn’t going to change anything.

I’ve always been good at compartmentalizing things going on in my life, and I’ve placed my disability in the attic, tucked away with all the other junk that I don’t have any use for. I hate the word disability or handicap, even though it applies, because I don’t want that to define who I am. I also don’t want people thinking of me that way. I’m still the same guy I was twenty years ago, it’s just that I walk funny now, have no balance whatsoever, and can’t do a lot of things I used to. Many of the things I can’t do, like yard work, I don’t miss at all.

I didn’t always have this attitude. I use to bitch and moan about a lot of petty things, and it took becoming afflicted with MS to realize how good I had it. Family, friends, and having love in my life was something I no longer took for granted. So now, I try not to sweat the small stuff, other than the Red Sox.

Granted, I still have full use of my arms, hands and the other leg hasn’t been touched. I still work full time, still drive a car, and still maintain the standard of living we had prior to the diagnosis. None of that has changed. I can still go for walks, although I’m slower than molasses and need a cane, a brace that lifts my foot, and a knee brace.

I know statistically that there is an excellent chance I will wind up in a wheelchair some day, and I also know I won’t be happy should that day come. In some ways I am trying to prepare for it, particularly in terms of housing and career, which is the primary reason I have started to write.

Is that denial? Perhaps. Maybe my tune would change if I was in constant pain, or if more of my body was affected. But still, every day above the dirt is a good day. Having your glass half full rather than half empty is really important to not letting something like MS swallow you whole and take over your life.

As they say, ignorance is bliss, so I’ll continue living in this self-constructed cocoon as long as I can until something punctures it. Until that day comes, and I hope it never does, I’ll remember that blog title, and wear it like a shield of armor and honor: Fuck MS!

 

Zombie Land

 

Fog

Most medications or treatments available to you will have some kind of side effect. In my experience, some are worse than others. Here is a list of all the things I have either tried, have had done, or am currently doing, and how they have affected me. Disclaimer: this is how these affected me – everyone is different. Your physician will guide you.

PILLS:  Ampyra: I took this for 90 days and stopped because it didn’t help me. There were no side effects.

Low-Dose Naltrexone (LDN): This is a compounded medicine that my current neurologist suggested years ago, and is the only pill I continue taking. Ironically, I stopped taking the drug four years ago because I didn’t notice any changes or improvements, and wanted to reduce my medical expenses. Two weeks later, I wasn’t getting around as easily and my foot seemed to drag more, so I resumed taking the pill and have never stopped. This is not a standard MS treatment. In fact, many in the medical community question its efficacy, but it has certainly helped me.  Anecdotally, the FDA has approved Naltrexone for the chronic treatment of opioid dependence and drug detoxification. Hmmmm.

SELF-ADMINISTERED INJECTABLES:  Early on, I took Betaseron for a few months, ditched that, then tried Copaxone. These meds have more of a proven track record for RRMS sufferers, but I tried them anyway. What did I have to lose?

I used the auto-injector, a gizmo where you load a pre-filled cartridge into the injector, position the tip flush onto the site, and pull the trigger, which releases the needle and dispenses the drug subcutaneously. I eventually stopped because they did nothing for me, other than cause bruising at the injection site and, in some cases, angry, sore welts. These occurred when I had the injector positioned at a slight angle into the body, I was holding onto the injector too loosely, or didn’t have it placed firmly on the injection site. The truth is I was never comfortable giving myself shots, particularly in the arms and the hips, which is where I screwed up most of the time. The stomach and butt were easier, primarily because there was more fat there and it didn’t sting as much, but if I did make a mistake on either, I’d be reminded for a few days every time I sat down.

SPINAL TAP:

Also called a lumbar puncture, this is a procedure where a needle is inserted into your spine and fluid is removed. A high volume of certain proteins in the spinal fluid means you have the condition. It isn’t fool-proof however, as 5 to 10% of people with the condition don’t test positive for the protein.

The main and most problematic side effect with a spinal tap, occurs when fluid leaks out and changes the pressure in the brain or around the spinal cord, causing a horrific headache. I was flat on my back for two hours before I was discharged, and was encouraged to lay down for most of the day upon my return home, in addition to drinking a lot of water. While I was resting in the hospital following the procedure, a nurse told me the headaches didn’t occur frequently, and fortunately I was not the exception.

If you are thinking about having this done, my only recommendation is to have the procedure done at a hospital. Not a doctor’s office. My appointment for the procedure began at my first neurologist’s office, where I had to tuck myself into a tight fetal position while he attempted to draw fluid. It was not the most pleasant experience in the world, and was compounded by the fact that he did not succeed in drawing any fluid after four attempts. Each new attempt was more uncomfortable than the previous one. I was not a happy camper, and I think he knew better than to suggest a fifth try. Instead, I went to the interventional radiology department at the hospital across the street from his office. They had me lay on my stomach, positioned the needle with the help of a computer, and got what they needed in about thirty seconds. I didn’t feel a thing.

STEROIDS:

I’ve received monthly infusions of solumedrol, a steroid, along with other IV agents I’ll mention shortly, for about eight years. As I mentioned in my previous post, the impact after the first three-day home treatment was remarkable. As I also mentioned, I had to deal with an uncommon and miserable side effect that caught me completely by surprise: hiccups.

You might wonder, what’s the big deal? Well, these little bastards started on day four, became chronic, and lasted for three long days. I’d get a brief respite, then they’d resume and last for hours. I didn’t know what to do and, like a dumb ass, didn’t bother to call my doctor. I just suffered. At first it appeared that eating helped them subside, so I gorged myself. That turned out to be a dead end. All it did was make me feel like a fully inflated basketball had settled into my stomach, which made the hiccups feel worse. I’m not taking about one hiccup at a time either. As the days progressed they would come rapid fire in threes, fours and sometimes fives. I talked little, and felt like a freak at work. Sleeping was next to impossible, and I felt utterly helpless.

Even now, when I get infused with one gram of the stuff each month, I have to deal with hiccups the following day. They start off slowly then pick up steam as the day progresses. It’s just something I have learned to live with. Fortunately, they aren’t as chronic, and are gone by the time I go to bed.

One other side effect is ravenous hunger, which lasts up to the time the hiccups start, so I guess they are good for something because the last thing I feel like doing when I have hiccups is eat.

I can’t speak for the long term effects of repeated steroid use. What I can tell you is that a dear friend, who suffers from Crohn’s disease, has been taking prednisone for over fifty years. He currently has a host of joint issues, and the wall of his heart has thickened. He has no regrets, however, because it was either deal with the pain or have a decent quality of life. I feel the same way, but wonder if the steroids will come back to bite me somewhere down the road.

CHEMO DRUGS:

In addition to the infused steroids, I have also been receiving a chemo agent called Cytoxan. When I first started taking it, I was in bed for two days. My body apparently got accustomed to the drug, so now I’m in Zombie Land for only one day.

When I get home on the day of the infusion, I’ll feel a little fatigued. The next day I’ll wake up feeling pretty good, but as the day wears on, the fatigue settles in for an extended stay, and my face looks and feels like I’ve been in the sun all day. I’m the stubborn sort, so I plow through the day and try to be as useful as possible before giving in on day three.

It’s hard to describe what day three feels like. The analogy I’ve come up with, is that it feels like a fog slowly rolls in, then descends in full force, enveloping me in a shroud of dazed lethargy. I call it Zombie Land because that’s what I feel like. I don’t drink or eat much, and have no desire to do anything. My body feels like a wet dishrag, my mind feels like I am beyond stoned (and not in a good way), and this lasts all day. I sleep a lot, and when I am in the deepest regions of Zombie Land, the dreams are bizarre.  A repeated one involves me being in my bedroom, and I am awake. I’m woozy and can’t tell if  I am dreaming or not. Then, I begin to levitate above the bed and hover there. I eventually realize I am dreaming, but it still feels very real. In fact, all the dreams I have when I am in this state feel very real, which is great if it’s a good dream, but sucks if it isn’t.  On day four, the haze has lifted, and I feel burned out, like I’m coming off a bender, but without the headache. By the time I get home from work, the burnt out feeling is gone, and I’m simply tired. Everything is normal the next day.

I can’t imaging what cancer patients have to go through. I only get 600 milligrams of the stuff and feel like crap. Thank God they give me some anti-nausea meds during the infusion because I wouldn’t want to have to deal with that too.

I just started a new drug last Friday called Orcevus. On par, it was a slightly better experience compared to the Cytoxan. I receive a smaller dose of steroids, which meant no hiccups at all, and that was wonderful. The fatigue on the day of the infusion was a little worse but infinitely better the following day, although the sunburned feeling remained. On the third day, Zombie Land arrived early and hard, and stayed that way most of the day. I slept more than usual and still felt semi-comatose by the time I finally went to bed for the evening. The burned-out feeling the day after the zombies left town was minimal.

If you’re keeping score, day one was a wash, days two and four were better, and day three was worse. I can live with that, and the best part is I will only have to do this every six months instead of every month, once my initial course is over (I get a second dose next Friday). Having said that, the Orcevus I received was half the dose I normally get with the Cytoxan, because the protocol is to split the first dose two weeks apart.  It makes me wonder how bad Zombie Land will be when I get the full 600mg dose in March, or how long I will reside there.

Plasma Apheresis

I described the plasma transfer in my previous post, so I won’t describe it here. As far as side effects are concerned, there aren’t any, at least not for me. But what I don’t like about this procedure, or any of these procedures for that matter, are the needles and tape.

First of all, when receiving an infusion of steroids and/or chemo, there is only one needle used, and it’s a fairly small one. Sometimes, you hardly feel it going in. With this procedure, two needles are involved, and the second one is bigger because it has to handle the volume of blood coming out of the body without popping out. I exaggerate by calling it a sewing needle, but sometimes it feels that way going in. They also don’t stick this needle deep into the vein like they do for the infusion needles, thank God. It typically goes into the big vein in the crook of the elbow, and it has to remain in position in order for the blood flowing out the body and into the centrifuge to remain at a constant volume. This means that if for some reason it moves, or the flow somehow gets disturbed, the nurse has to remove the tape and fiddle with the needle, i.e., move it around while it is in your vein to get the flow going again. That makes me break into a cold sweat.

The other issue I have with needles is that sometimes the vein looks good but flattens out when the needle is inserted, which means they haven’t hit their intended target. When this happens the needle will get moved around to see if they can get any blood. If that fails or hurts too much, the needle is removed, a new one is retrieved, and you get stuck someplace else.  My record for needle sticks for a single procedure is six. That happened only once, during the time when I had three plasma transfers done in a two week span. By that time there weren’t a lot of places to choose from, and my arms were starting to look like raw hamburger. Good thing it only took six, because there wasn’t going to be a seventh. There weren’t any other places to try. The IV nurses usually get it right the first time, but everyone has a bad day.

The tape, and specifically its removal, hurts more than anything else. A lot of tape with strong adhesive is used to secure the needle in place and to prevent it from moving. As you can see, I have a lot of arm hair. So when the tape comes off, it hurts like hell. I’d prefer that the nurse just rip the damn thing off and get it over with quickly. Unfortunately, the tape is removed slowly and carefully so that needle doesn’t get yanked out haphazardly. It feels like each hair is being plucked out individually before they get to the point where the needle and rest of the tape can be quickly removed.  Not fun.

IMG_0322

I’m tempted to get my arms shaved or waxed, but that would not be a good look. This is the primary reason that my favorite place to have a needle inserted is the top of my hand. That sounds awful, I know, but there is no hair there, and I can move the hand freely without feeling the needle in it, unlike other places. Plus, having the needle placed there doesn’t hurt any more than any of the other spots. You just assume it will because the skin is tighter, and there isn’t much meat there.

Words of advice

The key to having plump, juicy veins that your nurse can pierce with one stick, is to hydrate, and coffee doesn’t do it. Drink as much water as you can before your procedure, and this will go a long way towards ensuring you won’t feel like a pin cushion. The only caveat is that if you are having the plasma transfer done, you’ll have to walk a fine line with water intake because once the machine is turned on, you can’t get up.

The arm with the big needle shouldn’t move at all, otherwise the outgoing volume can change, which means the needle gets moved around. So the goal is to drink enough to get your veins plump, but not so much that you can’t hold your bladder for the hour and a half procedure. Otherwise, you will have to ask for a hand if you need to pee. Literally. Besides being embarrassing and a little messy,  it could also result in the big needle getting dislodged or moved.

Medical Marijuana

I wish I could should share this experience with you, because I am definitely curious. I’m itching to get into one of the dispensaries in Connecticut, where it is approved for MS, see what they have to offer, and learn if you catch a righteous buzz from the stuff. Alas, I can’t because I haven’t had the experience. Not that I’m bumming, because one of the things it manages best is one symptom that is very common for people with MS, but one that I have fortunately managed to escape so far: pain.

 

If you wish to share your experience with anything I have mentioned or, preferably, anything I haven’t, please leave a comment.

 

 

 

Meds and Treatment

IMG_0312One of the first items most of us have to confront is how we are going to treat our condition, most of which involve drugs of some kind. The most viable options are predicated on the type of MS we have.

I tried virtually everything in the beginning. Even though interferons aren’t designed for primary-progressive (PPMS) folks like myself, I tried them anyway at the suggestion of my first neurologist. Sticking myself with needles several times a week wasn’t the most natural thing in the world, and I developed a better appreciation of what diabetics must endure on a daily basis. I didn’t do this for very long because it didn’t help me.

Next up was a three day course of steroids infused intravenously at home, and afterwards I thought I died and went to heaven. My symptoms, which were minor compared to what they are now, virtually disappeared, and I felt like I escaped from prison. Unfortunately, the relief lasted less than two weeks, and the symptoms slowly re-appeared. I also developed a little-known side effect that sounds trivial but proved to be one of the most trying experiences of my life. I’ll elaborate on a future post about side effects. Also be aware that you will have a port attached to your arm during those three days, so all you have to do is clamp new IV tubing into it rather than have to insert and affix the needle each subsequent day. You can’t get the port wet or it could cause an infection. So no swimming, and you will also need to wrap your arm in plastic wrap when you take a shower to keep it covered and dry.

One last word of advice. If you do the three day home treatment, listen to the nurses’s instructions, particularly the part about putting immediate pressure with a sterile gauze on the site when you remove the needle. My third and final dose was done early on a Monday morning, before I went to work. I was a up exceptionally early that morning so I could finish the treatment, which takes about an hour. Given the hour I wasn’t thinking very clearly, and forgot the part about applying pressure when I  removed the needle. What a mess! For the few seconds it took for me to realize what I forgot to do, blood spurted all over the place. It made one hell of a mess, and looked like a scene from a slasher movie. Good thing my wife didn’t see it. She hates the site of blood.

Soon thereafter, I started monthly infusions of steroids and cytoxan, which is a chemo drug. When my current neurologist suggested it, my first thought was, “are you kidding?” But MS is an auto-immune disease, so theoretically the drug helps the progression by compromising your immune system so it stops cannibalizing the body. It must work, because while my progression has not stopped, it has been slow and remains confined to one limb. I also assumed that since I would be taking this shit, I would catch every cold, virus or bug that I came into contact with. However, since that time I have been remarkably healthy. Strange.

Plasma exchange (plasmaphersis – see photo) got added to the equation a few years ago. This is a process where needles that are connected to  plastic tubing, are inserted into a vein in each arm. The blood exits your body through one arm and enters a centrifuge, which filters the plasma that contains the antibodies that attack the immune system.  The good plasma or a plasma substitute (in my case, Albumin) is returned to its host via the other arm. It’s very similar in concept to kidney dialysis. When I first started my infusions, they were done in the apheresis center, where I first saw patients getting the treatment hooked up. The process looked uncomfortable, medieval,  and swore I’d never consent to it. Now it’s old hat. In the beginning I had three of these treatments done over a two week period and the results were similar to my first steroid gig: a significant improvement. However, like steroids, the improvement was short-lived, and now I get them monthly in addition to the other infused meds to maintain the status quo.

I haven’t had these infusions for over three months now due to a kidney stone issue I had to deal with. Previously, the longest I had gone between treatments was six weeks.  During this time my walking has become more cumbersome and my balance is worse than it has ever been. I resume treatments tomorrow (with a new drug this time) and I’m expecting the symptoms will revert back the the level they were three months ago. If not, I’m screwed.

The drug and treatment options are numerous, but the bottom line is they involve pills, needles, expensive procedures (thank God for good health insurance) heavy duty drugs, or a combination of them. I’ve only covered what I know, and haven’t scratched the surface in terms of the meds available. Your neurologist should be able to explain what he or she thinks is best for you, and explain the pros and cons in detail. Don’t make the mistake of not asking questions.

Diet, exercise and other holistic means can’t hurt, but we’ll talk about those at a later time.

NEXT POST: Zombie Land