Category: General Health

Dear Diary, You Can’t Make This Shit Up

April 30th: Woke up this morning feeling punky with lower back pain. Had my plasma transfer on Thursday, and today is the day I start feeling normal again, so this caught me off guard. But I was in bed a lot these past few days and it isn’t unusual for the back to bark when I am, so I went about by business early this morning and picked up the groceries, but when I got home I couldn’t put them away because the back hurt worse and I had to lie down because I felt like complete shit. As time went by it got worse instead of better, and I could not understand what was going on until the answer came to me in a flash. I had K take me to the emergency room, where they gave me fluids and took a CT Scan. As I suspected, it’s a kidney stone – 4 mm. They gave me some pain meds and more fluids and sent me home 4 hours later. Got a script for anti-nausea meds and a few oxy’s if the pain gets severe, but I’m going to avoid those unless the Tylenol Extra strength stops working. I’m feeling much better now but need to see a urologist.

May 6th: Went to the urologist office. They explained that given where the stone is, it will take about 25 days for me to pass it. They also said that during its journey, I will feel it move from my back to the front, and I will notice it moving further south until it passes.  It could be painful at different points but if that occurs, I am to take pain meds and the anti-nausea stuff and call them if that doesn’t help. This will be my first experience passing one, because my only other experience involved a stone that was too big to pass (8mm) and had to be surgically removed. I also have a strainer to use because they want to see what it looks like at my next appointment, scheduled for May 29th. This should be fun.

May 14th: Woke up this morning and my body was on FIRE! Plus, my lower right abdominal quadrant, where I last noticed the stone, is so tender that even touching it is painful. My entire abdomen feels like I’ve done 200 sit-ups. So, I swallowed some Zofran and two extra-strength Tylenol, and an hour later I felt good as new. But the fever came back during the evening, so I took more drugs and was able to sleep. This already sucks more than I anticipated, but at least it appears the end is near. K suggested this was in the same area as my appendix, and that maybe I should ask my PCP, but I dismissed that because it is also in the same place I last felt the stone. One thing to worry about is bad enough, and I don’t want to sound like a neurotic patient.

May 15th: Couldn’t work today. Yesterday’s pain is not back, but the fever is, I feel so wrung out that I had to call it a day after three hours. This can’t end soon enough.

May 16th: Back in the saddle and got a full day of work in, I’m but concerned about the fever that doesn’t want to leave. I’m eating Tylenol like candy.

May 18th:  

9AM. My fever spiked again last night: 102.7 degrees. I think my fever on Sunday when this first all started was higher (I didn’t take it at the time) but something is wrong. I’ve had a running fever of 102+ since Sunday. The Tylenol kills the fever, but it comes roaring back when the meds wear off. I called the urologist and they told me to go to the ED because all the pain meds are doing is masking something that isn’t going away.

10:30 AM. Saw the ED doc. They are going to run the same tests they did on the 30th but need to do a COVID test because of the fever.

1PM. Blood tests came back with good results. The urine too. They did not detect any blood in the urine, which I thought was odd. The kick in the ass was I tested positive for COVID, and I am dumfounded. I do not go into public buildings without a mask (I am in the distinct minority) and avoid crowds. I’ve been out to eat three times in the last month or so, but wasn’t sitting near anyone other than the folks I was with. This is so bizarre, but at least now I understand why I’ve felt like shit for five days. I asked if that rules out the need for the CT scan, but they are going to do it anyway because my abdomen is still tender.

3:00 PM. A different doc just walked into my little room in the ED. A surgeon. He introduced himself and explained the reason he was there is because the CT scan results indicate my appendix needs to come out NOW! I’ve already called K to tell her about the COVID. She scheduled PCR tests for herself, Nidan and her 86 year old Mom who has COPD and lives with us, and now I have to let her know I won’t be coming home tonight. She won’t say I told you so, but she was right. I should have listened to her when she first asked about it. I’m having a hard time wrapping my head around all of this. You can’t make this shit up.

May 19th: Going home today. The surgeon said the appendix was extremely inflamed and was not in good shape. I shudder to think what might have happened if I let this go a few more days. One of the questions they keep asking me is if I’m passing gas, and they were happy to learn that my fart glands are alive and well. K later told me when the surgeon called last night to tell her the surgery went fine, he said that while he is not a radiologist, he could not see evidence of a kidney stone when the previous CT Scans clearly did. Don’t know how that occurred, because I have been using the filter and I could still feel it before all this weirdness started happening. But I can say that about of lot of things these past five days. On a positive note, everyone else in the house tested negative for COVID, so I thankfully haven’t gotten the entire house sick.

Postscript: I am four days removed from surgery. I was given antibiotics, an antiviral med for the COVID (six horse-sized pills each day for five days) and some stool softeners. I need to take those twice a day because the last thing they want is for me to be constipated with the three new incisions in my abdomen, which made sense. I did not realize it at the time, but after I was plagued with constant diarrhea, I looked at the bottle the antibiotics came in and discovered one of the common side effects was diarrhea. Swell. I stopped taking those like a bad habit, and at least that is starting to improve. Here are a few things I discovered during this journey.

  • I would not dare attempting to fart without sitting on the porcelain throne because it would result in a mess. When I shared that tidbit with one of my cousins, he called that phenomenon Sharting. I kind of like that.
  • COVID is still thriving. The positivity rate in CT, which is one of the most highly vaccinated states in the nation, is over 15%. My nurse said they have more patients in-house with COVID than they have since the last surge. The vaccines do help prevent significant problems and death, and anyone who can’t see that is a fool. They are playing Russian Roulette with themselves and loved ones. I just don’t get it, and never will.
  • The worst pain I felt after surgery was not my abdomen, but my throat. They inserted a breathing tube during the surgery because of the COVID. I had it in for a little over an hour, and I woke up with the worst sore throat of my life. I can’t imagine what it must have felt like for those who had to be put into a medical coma and survived that lenghty ordeal having had a tube in their throats for all that time.
  • I am still COVID positive, and the worst thing is a metallic taste that is constantly in my mouth. I’m sucking on lollipops and popsicles to try to combat it. This provides temporary relief but that’s all. It also charges the way everything tastes. Even water.
  • I don’t know how anyone who has a full beard can stand wearing a mask all of the time. I don’t have one, but do have a mustache and goatee. I like to keep it trimmed closely, but it got long and bushy over these last three weeks and wearing a mask was really irritating my face.
  • Speaking of masks, I received a number of N-95s from the hospital to take home and find it interesting that they come in different styles and shapes. The one I am using now is definitely not a favorite. I look like Donald Duck when it’s on.
  • My quest to lose weight is over! I weighed over 216 pounds when I started with a goal to get it down to 190. I achieved that by the time all the shit hit the fan on May 14th. Since then, I’d drink a lot of water, but there were days where I ate hardly anything at all because the idea of it was nauseating. I lost six pounds during those five days. This is the lightest I’ve been in over twenty years. Thirty-two pounds gone in almost five months. I’m done!

Stay well my friends.

Another Line of Defense?

Red Cross

I just got off the phone with my neurologist, who said that besides the fact we know this virus is susceptible to soap (thus the need for constant hand washing), there is also some indication it may be susceptible to heat that exceeds 130 degrees Fahrenheit. So place a towel around your heads, put your head above a bowl of steaming water and inhale through your nose. The theory is that the heat will kill anything that settled into your nasal tract before it can get to your lungs.

I don’t know what the CDC or WHO has to say about this, but it certainly could not hurt, makes sense, and is drug free. I know this will become a part of my daily routine.

 

 

 

 

 

A Different Kind of War

War

When I last wrote, I somewhat flippantly said it wasn’t as if a nuclear blast was imminent, and mockingly asked if people would resort to wearing garlic necklaces. How things have changed during these last twelve days.

I now have enough food and supplies to last the better part of a month, completing that endeavor by hitting the package store and dispensary yesterday. I have been working from home since Monday, for which I am grateful. I am not living like a hermit, and continue to venture outside to get essential items when necessary. I also meander outside the house on sunny days, following the social distancing protocols to the letter.  Still, the experience is surreal to say the least.

What I have experienced more than anything else these last two weeks, is how my perception and perspective of things have changed. I have habitually looked ahead, and planned for stuff months in advance, primarily because it gives me something to look forward to. Now my focus is literally day to day. Many things that were important seem trivial by comparison, and my priorities are where they should probably have always been. I care about what is happening in the global markets, but am not obsessed by it. It sucks that this pandemic hit while I was trying to sell my house, but there isn’t anything I can do about it. At least I have an empty spot to use as quarantine headquarters if that becomes necessary. Sports has always been my passion, but I don’t care when or if any of the seasons resume. I have been diligent in my proactive MS treatment, but am seriously considering suspending all of it for two to three months.

All I care about is the health of my friends and family, and hope that we are all still here come 2021. Talk about a stark, sobering reality.

I fortunately have never had to experience the horrors of war, but lets not kid ourselves. We are neck deep into one. There isn’t any lead flying, and we don’t have to be afraid of the metal hitting the meat when we step outside, but this war involves projectiles that you can’t see, which is more unnerving when you think about it. I feel for those who suffer from anxiety in general because if I were an anxious person by nature, I would be constantly afraid that a person in my line of sight might be one of them, as if they were part of The Walking Dead, or that there was an invisible cloud of viral death lurking in pockets of air outside.  Rationally, I know that is not the case, and that by keeping the appropriate social distance and washing my hands constantly, I am safe. To say however I’m not anxious at all would be a lie.

I don’t blame our government for not preventing this because that was impossible. What I do blame them for however is not taking it seriously, preparing for it and at least ensuring that what was needed to test and treat once this hit was in place. They have failed miserably in that regard, continue to do so, and still mislead the public by painting rosy pictures about drugs that don’t exist, and that help in the forms of supplies and equipment is on the way. As citizens we are dependent on our Governors to take charge, and many of them are rising to the occasion, but it is tragic we have to resort to this. Working in the healthcare field, I know that front line staff is running out of personal protective equipment (PPE) and we still don’t have enough test kits. It feels like we are living in a the midst of a Stephen King novel. I just hope people remember this come November.

Unfortunately, we are not alone, as this brilliant piece by Bojana illustrates. God help us.

I am trying to appreciate the little things in life, like a glorious sunrise and sunset, sitting on our deck, and enjoying what nature has to offer.  As sometime who has been married for over 30 years, I am spending more quality time with K than I have in a long time, and enjoying every minute of it.  I am actually reaching out to friends and family more than before because I appreciate them more and because it is a way to feel connected as we isolate ourselves socially. It’s a pity it took something this catastrophic to make that happen.

I know that the large majority of us will not get sick, and that the majority who do will survive this. But what a sad and miserable way to go for those who don’t. I believe that we will see the good in people more than the bad as we all work together for the common good, and hope that feeling of brotherhood and community survives this crisis. Everyone needs to sacrifice and follow the social distancing protocols so our hospitals don’t get overwhelmed, like they are now in Italy and are starting to in New York City. If that occurs were are all truly fucked.

It is time to hunker down, follow the rules, hope that the worst will be over soon, and most importantly, survive.

I beg you all to do the same.

 

 

 

Wheezing Towards the Finish Line

Wheezing

The finish line is close. I can see it clearly, as it is almost within our grasp. All that is left to do is install the floors, finish the trim around the doors and floors, install the appliances, hook everything up to the plumbing and electrical systems, finish painting, plant the grass, and lay the blacktop for the driveways. It sounds like a lot, but in the scheme of things this is short par putt. At least I’d like to think so.

I should be giddy, but the truth is I’m exhausted, more mentally than physically. In fact, I almost nodded off on the way home from work yesterday waiting for a long stop light.

I can’t speak for K, but I’d bet she’d tell you she is feeling the same way.

I am tired of being in limbo, with a foot in both places. Not only are we preparing the final touches on the new place, our current one is in compete disarray. The garage is half full with packed moving boxes and other items, and our living room has an assortment of boxes in various stages of being packed laying about. There is still cleaning and painting to do. The pace is relentless, and not feeling settled is, well, unsettling. I know the end is near, as I believe a late September/early October move is imminent, and that is part of the quandary. There is still so much to do in such a short period of time. It often feels overwhelming.

Each day is a blur. Wake up when it’s dark, go to work, come home and figure out what to eat (planning and preparing meals is more the exception than the rule), then head to the site and perform a myriad of little tasks to make things easier for the workmen and prevent unnecessary delays. One or both of us stay there until dark, then we come home, clean up, collapse for a few hours, drag ourselves to bed, and do it all over again the next day. By day’s end my mind is mush and my body is spent. I move around like a Walking Dead zombie. K’s body is sore from head to toe.

This weekend’s priority is to get everything off the floors of the new place, and trust me when I tell you there is a lot of big and little shit strewn about, much of which needs to be removed by tradesman, and get the floors cleaned, vacuumed, and otherwise prepared for the wood floors that will be put down next week.

It has literally become a seven day a week, eighteen hour a day gig, and has been this way for about a month now. You’d think the pounds would be melting from all the activity and the reduction in food intake, but you’d be wrong, so I don’t even have that perk to feel good about. The grind is relentless and tedious.

We are at the end of a what has been a grueling marathon, which is ending on an upward slope. The slope feels steep, but we need to muster a strong finishing kick. The task seems Herculean, but I know it will happen. What choice is there?

I know it will all be worth it. I know we will love the comforts and amenities of the new place, and I know that some day in the not so distant future we will look back at this with a nostalgic fondness. I also know this will all be over soon.

But it can’t happen soon enough.

 

 

 

Perception vs. Reality

reality

“I wonder what people think when they see me.”

That was a common refrain of mine once the symptoms became entrenched and my mobility became compromised. I was never one who liked to stand out in a crowd, preferring instead to blend into the background. MS made that impossible. My inability to walk in a straight line, my tendency to thrash my arms about to maintain balance before the cane became a constant companion, and the frequency in which I would stub my toe and stumble forward because I refused to slow down, made it feel like the  white hot spotlight shone on me whenever I was in the public eye.

The idea that people made assumptions because of the disability used to really bother me, and on the rare occasions where I actually fell in public, I wanted to dig a hole and bury myself out of sight from those prying, judgmental eyes.

I don’t feel that way anymore. Quite frankly, I don’t care one iota what anyone who doesn’t know me thinks when they see me struggling. Having said that, not caring isn’t the same as not being curious, because I still sometimes wonder what a person’s perception is the first time they see me.

What do they see? What do they think? Are they sympathetic? Are they afraid? Do they think I’m a freak? Perhaps they are so wrapped up in their own heads they don’t notice me at all.

I try to think back of what my reaction would have been when I had an uncompromised body and was the one observing someone like me today. In all likelihood, I would have given them a casual glance and not give it a second thought. Perhaps I would have wondered what their story was, but would have spent maybe ten seconds pondering that question before focusing on the task at hand. Any thoughts I may have had would have evaporated, just like deleting an obsolete file from a computer.

I was self conscious at first because I wasn’t comfortable in my own skin. Not wanting to appear weak or unsure of myself, I worried that the image I projected made that impossible. I was also hung up on the primary progressive label attached to my MS, which convinced me that I was going downhill fast, which only fed my insecurity.

The most intriguing aspect about having a chronic illness or disability is that you learn a lot about yourself. My self-esteem from a physical perspective was shattered, but over time I learned that physical appearances and ability are not what defines us, although it’s a pity it took something like MS for me to realize that. What I also learned is that that my priorities were wrong.

Career and money were very high on my list, you see. But of all the humbling realities something like MS forces upon you, the one true gift it provides is perspective.

In hindsight, I think family, friends and health were always important to me, but not like they are today. My career had to take a hit because I couldn’t physically handle the stress and demands of the position I was in, and with that came a loss of income, which really freaked me out because the fear of being broke had always been my Achilles heel.

But I was fortunate enough to land in a place where over time I was able to recoup that temporary loss, and the reality of not having to deal with all the crap that comes with  being a boss in a middle management position was an unexpected bonus. My ego took a hit at first, but that soon faded as the amount of stress I endured in the work place shrank to practically nothing.

Not having the work distractions I was accustomed to for over twenty years, in addition to having diminished physical abilities, made me appreciate and understand how important family, friends and health were. It’s a cliché, I know, but when your health is compromised, material things don’t matter. What matters is the love and the people in your life.

That epiphany allowed me to step back and reassess where I was and where I was going. Many of the little things that used to concern me fell by the wayside. One of those, although it took some time for me to get there, is that strangers’ perceptions of me were unimportant.

It helped that what I thought “progressive” meant in terms of how quickly my physical ability was going to deteriorate didn’t materialize. Remember, this was almost eleven years ago. I thought that by now I would be unemployed, wheelchair bound, on disability, in searing pain, and unable provide for my family the way I was accustomed to. So I am lucky in that respect.

But the not caring about what others might think evolved because I learned how mentally tough I really was. There is a line in the Shawshank Redemption, where Red talks about his future and the two choices before him: get busy living or get busy dying. I chose the former.

Self-pity wasn’t something I was going to indulge in. I was going to do whatever it took in the way of treatments, drugs, diet, and things of that nature to keep the progression at bay and live as normal a life as possible. I wasn’t going to let MS rule or define me, and a rebellious nature I never knew I had bubbled to the surface. Of course, I’ve fallen a few times, literally and figuratively, but for the most part this has served me well.

Maybe attitude has nothing to do with this. Maybe I’ve been lucky in that the progression hasn’t accelerated like I thought it would. I still think there is a very good possibility what I feared in the beginning will eventually occur, but I was planning on pulling the plug at work in five to six years anyway. I think I have that many good years left. Probably more, if I’m honest.

Having said all this, I still wonder on occasion what people think when they see me, but not for the same reasons I did eleven years ago. I’m curious because I’d love to know if their perception matches my reality.

I seriously doubt it.

 

The Need for Zs

Sleep

According to the National Sleep Foundation (NSF), the average healthy adult needs between 7 to 9 hours of sleep each night to function at their best. One can assume therefore that those of us dealing with a chronic health condition need more than that.

So of all the options available to help manage my symptoms and progression, you would think getting the proper amount of sleep would be number one on my list: a no-brainer, a slam dunk! You would also be very wrong.

For most of my adult life, I have averaged between 5 to 6 hours during the week, and it isn’t because I have a hard time sleeping or falling asleep. Unless my leg is twitching like a fish out of water, I’m usually out cold ten minutes or less after my head hits the pillow, and won’t wake up unless a full bladder or the alarm beckons. No, my sleep deprivation is entirely self -inflicted.

I know this needs to change. I’m often comatose when I wake up, and it is not uncommon for me to nod off while I am watching television or reading something in one of my comfy living room chairs, especially on weekends. During the work day, although my body and mind feel alert, my eyes often feel like they are sunk into the back of my head. My patience at home is less than stellar, I get annoyed very easily, and according to K, I have become a very cranky husband and father.

This is entirely fixable, and always has been, yet I resist. I’m a logical guy, but this defies logic and boarders on the absurd. I have my reasons, but honestly, they aren’t reasons. They’re excuses.

Decades ago, when I became a department head, I started arriving at work long before anyone else, because it was the only time of the day where I could accomplish something. But I’m no longer a department head, haven’t been for over ten years, and control my work day instead of it controlling me, so that issue no longer applies. What’s the next excuse?

I live thirty-five miles from my place of employment, which is located in one of the busiest sections of Connecticut in terms of rush hour traffic, which I hate. So even though I promised K that I would be a good boy and not wake up as early when I took this job, I somehow convinced myself that it would be a good idea to keep the early-to-work habit because not only would it allow me to avoid the morning rush, it would also allow me to leave the office early, avoid the afternoon rush, and have more time to spend at home.

Then MS reared its ugly head and I started all these treatments, which requires me to leave work much earlier than normal on treatment days. This sometimes results in me working less than forty hours for the week, which isn’t a big deal because I’m a salaried employee. But I am also old-fashioned and hard-headed. Salaried employees are supposed to put in more than forty hours, and I overcompensated by arriving at work even earlier, and working longer hours so I would never be in a position where I averaged less than the minimum requirement. This is insane because not only would that never happen, but if it occasionally did, nobody would hassle me.

So instead of sleeping more and getting up later, I am actually getting up earlier each morning, at 4:30, and sometimes even earlier than that.

The logical thing to do would be to go to bed earlier at night. We aren’t talking about stupid early either, such as 7:30 or 8:00. All I need to do is get to bed by 9:30, but instead, I normally hit the sack between 10:30 and 11:00, or later if my leg is spazzing out and I can’t fall asleep.

K thinks I’m nuts, and she’s probably right. Why is this so hard? I need to have some time to unwind, chill out, and enjoy the solitude of the evening, but I should be able to still do that and get to bed by 9:30, but it never works out that way. Unless I am so tired that I can’t keep my eyes open and I am physically unable to function, which happens on occasion, I typically get engrossed watching something on the television with K, or I’m caught up in the Red Sox game. The next thing I know, it’s after ten. Once again, these are excuses, not reasons.

Part of this being stubborn and a creature of habit. Part of it is this misplaced macho attitude that I am not going to change anything or give into this disease one iota, and by exerting my will, I am winning this battle.

Smart Steve understands what I am doing isn’t good for my health in general or MS in particular. Smart Steve knows the attitude I described is juvenile, and that there is no bona-fide reason I can’t sleep until 5:30 or 6. My job doesn’t require it, and I would still miss the worst of rush hour. On the rare occasions where I sleep even a half hour later due to an off-site meeting, I feel more rested and alert, so I know changing my ways would be good. It’s a simple thing to change too, yet I continue to resist. Why?

I’ve given you all the excuses, but what are the reasons? I pondered this question and wracked my sleep-deprived brain for a long time, but only come up with one.

I’m an idiot.

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.

Advice from Tom … Get it Checked

Steve invited me on the show to talk a bit about health. I don’t really know anything about health. But my wife owns a stethoscope and I found a mask under the bathroom sink. Let’s get started. Tom. On Health.

Steve and I discovered each other, recently, through a mutual blogger. As these things go, he and I were impressed with each other’s content, each other’s body of work. I dug into his stuff about the same time as he dug into mine. I admire his writing style. Descriptive, informative, never dry. I love the way he subtly discovers his own path back to balance when he feels off course. I can relate to that. A good example was in November, when recent posts of his own prompted him to get back to the upside of down things in “Sunshine and Rainbows.” No matter what life throws at us, we have a choice on how we react. Life threw MS at Steve, but it never beat him down. Not once. In fact, just two days ago he plowed the snow. Really? Steve, we do have limits. Someday you’ll learn yours. Maybe. 😁

Last week, out of the blue, Steve asked if I’d be interested in doing a guest blog for his site. I love to write, and have always sought balance in the number of posts I do in a week on my own site, so I said “sure!” Of course, Steve founded his site as a means to share his journey with MS with “candor, humor, and brutal honesty,” so I said “you know I don’t have MS, right?”

In fact, I have had only two light brushes with the world of MS. A few years ago, when I signed up to Facebook, I reconnected with all my old high school/church group friends. One of them, a little sister to a close pal, whom I helped recruit into the group, had been diagnosed some years earlier. On Facebook, she would tell peripheral stories of days with it – of transfusions and immobility – but I never knew the depth of her ordeal. I only know it never seemed to break her kind and giving spirit.

The only other encounter I’ve had with MS was when President Bartlett revealed his struggle with it to the nation. I was aghast. He was the only president I ever really liked.

Steve said, “of course, I know that. Doesn’t matter, Tom. Be Tom. Do what you do.

“But keep it to the matter of health, if you can, in some way. That is the central theme.”

That created a challenge for me. As I’ve stated recently on my own site, I’ve visited the doctor twice (for checkups) in the last decade. And then back in high school, 30 years ago. Except for the occasional walk-in clinic visit to make sure rib or back pain wasn’t too serious, or to get something prescription-strength for a bad cold, I just don’t have any health-related experiences of my own. That’s a blessing, I realize, so not a complaint. Nonetheless I have opinions. I’m bigly in favor universal healthcare, the kind we see in what I call the “better countries” around the world. I also want to believe in the science of longevity, the likes of which Ray Kurzweil speaks about. I want to live forever, as impossible as that will be.

If invited back for subsequent visits maybe I’ll talk about those things.

But it hit me yesterday, while in the shower (don’t all breakthroughs come from there?), that I had a health-related story from last year, and maybe a lesson to teach. It isn’t about me. It’s about a friend. A co-worker. We lost him in 2017.

He didn’t die. I should point that out right away. But we haven’t seen him since the week after Memorial Day. And it was for the smallest of reasons. Well, it started small, but it damn near killed him, and it certainly changed him. We fear forever.

I’m in appliance sales, and this man was our delivery chief. Just as amicable a guy as you could imagine. And incredibly competent. I don’t believe he missed a day of work in 7 years. Strong, both physically and emotionally. Smart. Funny as hell.

The last day I saw him was the second day of a toothache. Not a normal toothache, but the kind of toothache that swells one entire side of your face. I never saw a toothache do that. For the second day in a row I warned him that he had to get that tooth looked at, or it could be really, really bad. He worked through.

The next day was my day off. The others at my workplace said he showed up, more swollen than the day before, and was sent home. “See a doctor, or don’t come back,” the boss told him. He saw a doctor. The doctor told him he’d never seen a tooth condition, swelling, or infection that bad. They gave him medicine, told him not to return to work right away, and wanted to see him again after the weekend.

Over the weekend, he nearly died.

Someone found him in his living room, looking like he’d already passed. They broke in through a bathroom window to get to him, because he hadn’t answered his calls. His face was so swollen he was unrecognizable.

Over the course of the next few weeks, the doctors induced coma and put him through 6 surgeries to go after the infection. He spent weeks in the hospital. The last I heard they were still waiting for the infection to go down enough to go after the tooth, and that was a further few weeks after his release.

I’ve tried to call him. We’ve spoken to his mother, whom we all know at work. She tells us that she passes along our thoughts and prayers to him, but no, he doesn’t want to see anybody right now. We ask that he stops by sometime, to see us. She says that he says he will. Sometime.

I have mutual friends who have run into him, about town, so I know he gets out. I know he’s recovered (or is recovering) physically. They all tell me the same thing: “he’s not the same person we knew.”

He doesn’t want to interact. To talk. To quip jokes as he does. As he did. His mother says that he suffers from a form of PTSD from the experience. Depression. Anxiety. Nightmares and stuff. It broke him.

I did some reading up on PTSD after that and learned that 80% of all sufferers are only afflicted for a short time. I’m hoping this is one of those 8 out of 10 situations. I hope my friend returns someday.

I told you earlier that I’ve only seen a doctor twice in ten years. The last time was last week. I have a clean bill of health, so far, but there are still blood tests to run, and that colon thing to do this summer when I turn 50. Who knows. I may yet be a man of perfect health. But this thing, with my friend, was a reminder, and I’ve learned a lesson.

He’s a good dozen years younger than me. He never had to go to doctors. He was smiling and happy and ready for whatever life threw his way. And then a bad tooth upended his world.

It can happen in an instant, we all know that. But when it’s happening over time, when there is something that we can do about it, our body will tell us. His body told him about his pain for months, and he ignored it. My body said nothing for decades so I’ve ignored it. But I will ignore it no more. Annual checkups. Taking heed of the pains. Exercise. Cutting back on the red meat. Less beer.

I’ll do most of those. 😉

But I beseech you, out there, do the same. Don’t let it go. Get it checked. The smallest thing can be the biggest thing. Don’t be afraid to know. The worst thing that can happen is you can find out you have something. If you do, you’ll find a way to deal with it. Steve has. He found out he had something. He’s learned to live with it. Learn from his example.

Our lives may change. Our lives will change as we get older. Guaranteed. But when we know what ails us we can have more control over that change. If we don’t, that change can upend us. Sometimes, when we are upended, we never come back.

So, that’s my health-related story. I want to thank Steve for letting me tell it. For inviting me on. I hope I’ve entertained a tad, educated a bit, and didn’t make a fool of Tom. I hope to be invited back.

Honestly, I haven’t even attacked the pharmaceutical companies yet. 😎

The Hardest Part of My Day

dressed

I love sliding into bed at night. By that time, my body is tired and stiff from having to carry itself on one good leg throughout the day. My hip is sore, my lower back is barking, my foot is dragging terribly because I can barely lift it, and my knee won’t bend without a significant effort. In fact, it is ramrod straight, and almost feels like it is hyper-extended, although it doesn’t hurt.

When I slide under those soft, warm covers,  I can feel my body exhale and melt into the mattress. It feels like I’m weightless, and this poor body, that has trudged and wobbled around all day, finally has a chance to lay prone and release the pressure that has coiled inside it.

The flip side of this is that I have to drag my ass out of its warm cocoon the following morning, which is often the most difficult accomplishment of the day.

First of all, it’s a struggle moving in bed, other than the periodic leg twitching. Turning onto my side is an endeavor, particularly when I turn to my left. The only way I can accomplish that is to reach across the mattress, grab onto its side with my right hand, and literally pull myself onto my side. Turning to my right is easier, but instead of grabbing the mattress, I have to tuck my right arm behind my back and flop over onto my side, like a fish out of water. I therefore have a tendency to sleep on my back all the time, which has forced me to sleep with a pillow under my knees to prevent my back from getting sorer and stiffer, which further complicates the turning process.

So by the time my alarm alerts me to the new day, my body is fully rested, but it also feels like it’s one hundred years old. You see, I can’t just sit upright from a prone position anymore, and as I have already mentioned, turning on my side isn’t as easy as it sounds. Getting out of the left side of the bed is almost impossible, so after I turn to my right, I literally have to shimmy my lower half to the side of the bed, push myself upright, then gently grab the bad leg and place it on the floor. The good leg easily follows.  That’s the simple part.

My leg is the weakest first thing in the morning, so I feel like a newborn colt when I stand for the first time every day. They are also unsteady and, like the colt, it looks as if I am learning to stand and walk for the first time. Compound that with poor balance, which is also at its worst first thing in the morning, and I’m sure I look like a staggering drunk as I make my way to the bathroom. I literally have my right hand on the wall from the time I get out of bed until I reach the bathroom, and there have been many times where that short distance from the bed to the wall almost ended in failure. It feels like gravity is doing it’s best to suck me down onto the floor, but it hasn’t happened yet.

I am a lot steadier when the morning bathroom routine is completed, but the limb is still very weak. The next mountain to climb is getting dressed. Getting my clothes on above the waist is a piece of cake, but not so much with the lower half. Underwear used to be an issue until I learned that the easiest way to get them on was to simply grab the bad leg by the ankle and place it where it needs to go. Same with the socks, but there are two complicating factors in play.

The first is that I am not flexible at all, and I don’t think any amount of stretching, which is hard to do in the first place, will change that. If you have ever strained your lower back, you how difficult it is to put any article of clothing on your legs or feet. That’s how it is for me, minus the searing back pain. Some mornings, the body is so stiff that it feels like the act of getting my leg high enough, and bending my body forward enough to get my socks on, will result in a hernia, a rupture, or a complete blowout of the lower back. Maybe all three.

Then there is the balance issue. Most people think that balance is an issue when one is standing, but it can also be a problem when you’re sitting. When I’m getting dressed, if my butt is to too close to the edge of the bed, and I’m leaning forward a little too far, gravity will take over and I’ll crumple to the floor. Falling is embarrassing enough when you’re upright, but falling when you are already sitting down would be the ultimate humiliation, even if nobody is there to see it. It hasn’t happened yet, but I have come close several times. Mostly when my mind is somewhere else.

So now the chore is almost complete. I am fully dressed and ready to take on the new day, but before that can occur, I have to take my first trip down the stairs. This is the most perilous thing I do all day, not only because of the unsteadiness, but also because I have my socks on, which tends to make the wooden stairs feel very slippery. Plus, it is dark, so I make sure to count every one of those fourteen steps until I reach the ground floor. One hand is firmly on the rail and the other is sliding along the wall when I make that trek, which helps not only maintain my balance, but will keep me upright if the foot slips or the knee doesn’t bend and I lurch forward unexpectedly. As you can tell, I fear falling down those stairs. I don’t think it will ever happen, but I believe that if I were to ever suffer a life-threatening MS related mishap, falling down those stairs would be the most likely scenario.

Once I’m downstairs, all I have to do is get my stuff together for the ride into work, followed by the final act of putting my shoes on and tying them, which often takes two or three attempts. You see, the AFO brace I wear is in that shoe.  I have to hold the leg by the calf and aim my toes into the shoe. Once they are in, I can lean forward, hold the back of the shoe with my fingers and slide the rest of my foot in, before I tie the strings. I’m sure this process looks very odd to someone who witnesses it for the first time.

Now I’m golden. The stiffness that existed twenty minutes earlier is gone, and my strength and balance is starting to come back, although it will take another hour or so to reach maximum capacity. I’m ready for the day and all that comes with it.

By day’s end, the body is once again tired, ragged and spent. I’m off my feet for most of the evening after dinner and the evening chores are done. My rocker recliner calls and welcomes me as I watch television with my wife. Once it is time to turn in, the legs protest having to carry my 190 plus pounds once again. It actually feels like a thousand pounds, but I shuffle up those stairs one last time to start the bedtime routine, then slide under those blessed covers and let the tension melt away. It has become my favorite time of the day.

I wish I could say the same thing about the next morning, but one has to look at the bright side. At least there is a next morning.

The Auto-Immune Irony

illness

The symptoms were subtle when I was first diagnosed, but after a few years into my battle with MS, the progression became steadier, and I began to use a cane whenever I left the house. The interferons I was injecting myself with weren’t doing a damn thing, and I had become dissatisfied with my neurologist because he appeared unsure about how to proceed. In fact, he once called another neurologist to confirm a thought he had while I was in the office with him. This didn’t inspire a lot of confidence, so I decided to make a change .

I work for a large health system, and when I asked my boss if he knew anyone in the MS field I should consider, he deferred to the organization’s Medical Chief of Staff for a recommendation, and was given the name of a neurologist close to where I work, who was reputed to be one of the best clinicians in the state. I made the switch, and later learned that he was the guy my former neurologist had called that day.

During our first appointment, he declared I should change medications, which made me happy. I had come to hate injecting myself, particularly when I didn’t notice any improvement whatsoever on the progression front. In hindsight, I don’t know why I agreed to take them in the first place, because I knew they were designed more for the relapsing remitting (RRMS) kind, than the progressive kind I had. Tysabri wasn’t an option because the blood test he ordered when I scheduled the visit indicated I had the JC Virus. After listing the options available to me, he recommended I start monthly infusions of steroids and a chemo drug called cytoxan.  Shocked might be too strong a word to describe my initial reaction, but I was definitely surprised and confused. I mean, how in the world would a cancer drug help me. It seems silly now, but all I thought about at the time was getting sick and having my hair fall out, and asked him if I would have to deal with that.

He assured me the dose I would be getting wouldn’t cause those side effects, and I would be given an anti-nausea med just in case. When I asked why he believed this was the appropriate way to go, he explained that MS was an auto-immune disease and described what that meant. To paraphrase,  my immune system had run amok, and my body was cannibalizing itself in terms of the demyelination  that had occurred. The chemo would suppress the immune system so it would stop attacking my body, thus putting brakes on the progression. This explanation made sense, so I consented to the monthly routine.

This decision was made with a lot of trepidation that I didn’t share, because I didn’t want to sound like a wimp (I don’t have that issue anymore). Part of the anxiety evolved from the fact that I would be getting monthly blood tests to check my liver enzymes, because the chemo had the potential to fuck up my liver, which thrilled me. There were other things they would be checking to make sure the chemo wasn’t doing more harm than good, but that was the one that I latched onto.

My other fear was I would become susceptible to every germ known to mankind, because I would be shutting my immune system down. Consequently, I assumed I would be sick all the time, catching colds and any flu bug or any virus that was floating around. I thought the winters would become an especially miserable, unending chain of one illness after another. After all, wasn’t this a logical assumption, given that my front line of health defense was going to be taking a siesta? I was afraid that the devil I didn’t know would become worse than the one I did, but hoped that the reality would be different, and that the treatment would turn out to be the lesser of the two evils.

That was seven or eight years ago, and I look back at that time with amusement. Why? Because the weirdest and most ironic thing that has occurred since I’ve been getting these infusions, is that I’ve been remarkably healthy. Unusually healthy, in fact. Just mentioning it makes me wonder if I am jinxing myself for the upcoming cold and flu season, but I can’t deny the truth.

When I first started the treatments, I may have encountered the occasional cold, sinus infection or flu. I can’t say for sure because I don’t remember those kinds of details from that long ago, but if they did occur, they were far and few in between. What I can say with absolute confidence, is the last cold I had was two or three years ago, and it was short-lived. I don’t remember the last time I was sick with the flu, had a stomach virus, or anything like that. Last year, everyone in my household had something, and had it on more than one occasion.  I also work in a large office, where everybody was sick at one time or another. Not me. I was the oasis of health in a sea of sickness at home and at work. I’m sure germs were floating all around me on a daily basis, yet I remained unscathed. It’s bizarre.

Is this pure coincidence? I think not. I believe that even though I’m trying to put my immune system to sleep, it remains overactive enough to shield me from the maladies that latch onto everyone else, yet not so active that the progression accelerates. I guess my neurologist knew what he was talking about.

This winter is going to test this theory, because I have switched to a new chemo agent that I will take every six months, instead of one Friday every month. You see, even though I didn’t get sick, I felt like I had the flu every Sunday that followed the Friday infusion, a parting gift from the chemo. This new drug will be administered twice a year and actually kills certain cells (T cells?).  I assume this means the drug is stronger, takes longer to get out of my system, which in turn means it takes longer for the cells that it kills to be replenished enough to give them another whack. My next scheduled infusion isn’t until March, so it will be interesting to see if I will enjoy another illness-free winter. Should that occur, how can I not conclude that my over-active immune system is like Pac-Man, gobbling up every germ seeking shelter before it can settle in my sinus or gut?

A definite plus, but I’d rather have two good legs.

 

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