The Longest Day

One of the first posts I wrote when I started this blog almost 16 years ago touched upon the treatment options that were available for MS patients, and how the one I chose kicked my ass. 

I didn’t start off with the Apheresis treatments until I several years after the onset of my symptoms, but I did get Cytoxan infusions, which is a chemo drug, less than a year after I was diagnosed. For a period of about twelve years, I endured one lost weekend a month where I couldn’t plan or schedule anything because I couldn’t get out of bed. When when the opportunity arose to switch to a drug called Ocrevus, I jumped at it because I only had to get that infused every six months and welcomed the opportunity to reduce my trips to Zombieland from twelve times a year to two. 

I don’t remember how I felt after my first Ocrevus infusion, and every time I was scheduled for the next one, I couldn’t remember what to expect. Maybe that sounds odd, but when you are on a monthly routine you know the drill like the back of your hand. For instance, when I get the plasma transfer and steroids, I know I will want to sleep as soon as I get home, and day two will be hell because I will be racked with hiccups from the steroids all day long, and those take a toll.  Sometime time during day three, I’ll start feeling normal again. 

I’ve been on the Ocrevus for three years now, and every time a treatment is upcoming, I have the vague notion it won’t be bad as the Cytoxan, but never seem to remember what to expect. Well, yesterday was Ocrevus day, and I suspect I won’t forget what to expect the next time.

Fatigue was the main issue yesterday because that always happens with the plasma transfer. I took a nap when I got home because I was exhausted but stayed as up as late as I could afterwards, fearing I wouldn’t be able to fall asleep or would wake up at the crack of dawn. Silly me.

After getting up twice during the night to pee from all the fluids I was given, I opened my eyes sometime later feeling like my body was aflame with fever. I glanced at the clock thinking, and hoping, dawn was about to break and was chagrined to see it was only 3:30AM. 

So, it’s 3:30, I am hot as hell and my body feels like a limp dishrag. I want nothing more than to roll over and go back to sleep, but sleep doesn’t come. I am obsessing over how tired I feel and know that hoping sleep will soon come is a pipe dream. Everyone in the house is still asleep, so I toss and turn for about an hour before I give up and get out of bed, thinking that maybe if I am up and about for a bit it will tire me out and I’ll be able to go back to sleep. 

Part of the reason for posting this is because I have nothing else to do, and to document what to expect the next time: crushing fatigue, flu like symptoms without the fever, but alert and aware enough not to be able to stay in bed and sleep all day. By the time 7:00 AM had rolled around, I had already been up for over three hours, had read my morning papers on-line, played a few computer games, chatted with a friend, and sat in my rocking chair wondering what the hell I was going to do with the rest the day. I decided to crawl back into bed and was fortunately able to snooze on and off for a couple of hours. 

Sucks, doesn’t it? Yet I still consider myself fortunate because I don’t suffer from one symptom that plagues most people with MS: pain. I was reminded of that fact chatting on-line with that overseas friend while I was waiting for the sun to come up. I figured this person was awake because their local time was five hours ahead of mine. The last time we chatted I learned this individual was recently diagnosed with MS and was in the process of receiving Avonex injections. I had nothing else to do, and reached out to see how things were going only to discover a world of hurt: muscle pain, stabbing backache and a headache that felt like a railroad spike is being pounded into their temples and skull. By comparison, I have nothing to complain about.

The lesson here for anyone who is recently diagnosed and is mulling treatment options is that you may have to try different things before you find what is right for you. If something isn’t working or the treatment is worse than the disease, change it. And if your doctor doesn’t listen, change doctors. Reach out to others with MS and ask questions and join a Facebook or on-line group if you don’t know anyone (there are plenty). Research all the options on the internet. Try to take some control over your fate, even though it is very difficult to do if you are suffering.

As for me, it’s a little later in the morning and I still hot as hell and feel like I have the flu but don’t have a fever. I am tired and so lethargic that getting out of a chair feels like an achievement, but I can’t sleep. The day is still very young, but all I want is for it to be over. I hate being bored, see how many hours are left in the day, and am pondering what I can do to pass the time.

I suppose I can suck on my vape pen for a while because feeling stoned is better than feeling like this, but that wouldn’t be the smartest thing I’ve ever done. Hopefully there will be something good to watch on demand, Netflix, Prime Video, Hulu, or the some of the other channels I have forgotten about. Otherwise, I will be clock watching.

Tick, tick, tick.

Requiem For a Friend

One of the unexpected delights of writing a blog has been the people I’ve come to know. The blogging community is pretty tight, and I’ve been fortunate enough to get to know a handful of people over the years, some of whom I have had the pleasure to meet. It’s the kind of community where even if you fall off the wagon and stop writing for a while, you still have that connection because you continue to read their posts. So it was an absolute shock when I learned that a member my blogging family recently passed away.

I never actually met or spoke with Kim Johnson, but I enjoyed following her blog, which was called Tripped Over a Stone. Reading her stuff was a treat. Kim was funny, pointed, and as a fellow sufferer of a neurological condition, we had a lot in common. We would often trade notes and thoughts on Word Press and Facebook Messenger, and I considered her a friend. It was a sad day when she announced she was selling everything and was hitting the road with a lifelong friend to live the RV lifestyle and travel across the country. But I was happy for her because she deserved the opportunity to enjoy something she had wanted to do, even if it meant that she would no longer grace us with her candor and wit. 

Kim made the move in 2020 during the teeth of the pandemic. As I was prone to do during this time, I became consumed by what was going on and forgot all about her. I stopped checking her Facebook page, and completely lost touch. I was so out of touch that when another blogging friend notified me of her passing, I actually said “do I know her?” It wasn’t until she mentioned the blog that the light bulb went off and I felt like an idiot.

“Oh, that Kim!” I mumbled feebly, feeling my face flush.

Kim was funny, smart, vibrant, adventurous, courageous, and told it like it was. She was a talented writer and an educated woman, having earned degrees in Criminal Justice and Social Work, so you know her heart was good. She was a force to be reckoned with and had a light inside her that you could feel. I am sure we would have hit it off had we ever met in person. 

I flipped through her FB page once I heard the news, saw that Kim was having the time of her life on the road, and was saddened to have missed all that. I was also saddened that this happened to someone who had to deal with the constant pain of fibromyalgia but didn’t let that define or control her. Instead she forged ahead and lived the life she wanted, which is admirable. We should all be so fortunate.

But then she developed a cancerous tumor and had that removed, only to develop severe pneumonia within a month, which is what she succumbed to. She was 55. Life just isn’t fair.

Farwell Kim! I enjoyed knowing you, miss reading your posts and feel your loss. I’m embarrassed to have lost touch with you so easily. But the fact that I feel as bummed as I do illustrates you make an impact on me. I’m sure I’m not the only one who feels that way.


I think of the stages of our lives the same way as I do the change of seasons, except we experience each season once during our lives instead of annually. I’d like to think that places me in middle to late Autumn. I’d would have been bumming about that proposition fifteen years ago, but I like where I am now. I can honestly say I am looking forward to retiring in the not too distant future. I’m also banking on the assumption the longevity in my family (Dad at 96 and Mom at 92) won’t skip a generation, MS or not. So there is a lot to look forward to and enjoy. What I wind up doing with myself is a different topic for a different time. 

But the inescapable reality is that our bodies also change like the four seasons, and there are parts of my anatomy I’m not starting to like too much. I started to notice them during the early part of the pandemic, and sadly accepted the fact I wasn’t a Spring Chicken anymore.  I’m probably the only one who notices, because most of them are covered by clothes, but I look at them as a baseline to compare to as winter approaches.

Heading from North to South, we will start with the hair. It used to be thick, lush, and alive. Now it looks likes dry grass that is dying a slow death. My head is still covered, but I can no longer spend anytime in the sun without a hat unless I want a sunburned scalp.

The skin at the base of my neck heading down to the chest is starting to look like the pattern on a Spiderman costume. I’m also keeping a close eye on my neck, as the flesh below the Adam’s Apple might be drooping a tad. God-forbid it turns into one of those pouches that looks like something hanging off a Turkey’s beak.

My hands are by far the part of my anatomy I dislike the most. The skin is not smooth and is covered in wrinkles and brown spots. Each fat, wrinkled knuckle looks like Mick Jagger’s lips, and the two pinkies are crooked as hell. I also have this weird thing going on with the nails on my thumbs and most fingers. It’s hard to explain, but most of them have vertical ridges you can clearly feel and see. Don’t know what that’s all about, but I do wonder if it has anything to do with all the MS drugs I have been on or am still taking.

Heading further south we have two issues. Urine flow is one. The other? Well…… all I can say is that women are not the only ones who have things that sag with age and need more support.

The last item on the list is my leg and foot (the right ones), but MS, not age, is the root cause here. The leg is shaped differently, probably having adapted to the way I walk. It’s turned to a degree where the knee faces more to the right than straight ahead and the foot always is turned to the right when I am upright.  The ankle is typically puffy or swollen, the color in my foot is different, sometimes to a significant degree, and while I still have sensation in my toes, they also feel partially numb most of the time. I probably look like an arthritic guy well into his winter years when I walk. And that’s with my cane, which is a necessity.

There are other gripes that have more to do with things like blood-pressure, watching what I eat and drink, sleep, exercise, aches and pains, stuff like that. But our bodies are machines that become a lot more finnicky as the mileage adds up, so I have no complaints about doing what I can to prevent mine from prematurely crapping out.

I am also cool with all of it, all the chinks in my armor, because one thing outranks them all. Besides the perfunctory good health-clear mind stuff, my face hasn’t really aged terribly and I still look pretty damn good!

Happy New Year! What’s on your list?

October in New England

I’ve been in a funk for almost three years now. Why? Let’s see. Maybe it was the forced isolation and fear of getting sick (or worse) when the virus first reached our shores. Maybe it was the politicization of what this all meant during the 2020 elections. January 6th and its aftermath was a contributing factor. So is our tribal politics that places a premium on arguing instead of listening, where opinion has more merit than facts. There is also the issue of all this infecting our collective mood, creating an atmosphere where we have become increasingly angry, dismissive and less empathetic. Real hatred exists between segments of our society. Seriously, I can’t think of a single thing of consequence during this chapter of our history I’d consider normal. And when you listen or read about this stuff day after day after day over this span of time, it becomes ingrained.

I’ve always been a glass half-full guy, but my sense of hope and optimism was steadily eroding. Still, I forced things more in 2022 in an attempt to crawl out of this rut. I travelled out of state a few times, had more people over, circulated among friends more, and even went to a few sporting events. While enjoyable, these ventures didn’t generate any sustainable optimism about the future.

The life I once knew was gone. As a society, we had become so entrenched in being angry at and shouting each other down, who could foresee anything to be optimistic about? So, I gave myself a pep talk: stop moping, and stop expecting anything to change. You didn’t lose anyone close to the virus, and now we have vaccines that, if nothing else, protect us from dying. So, I said to myself, be grateful, pull your head out of your ass, and suck it up!

Still, that spark, or whatever it was I was looking for, was elusive, and I began to doubt that anything would ignite it. As it turns out, I was wrong. All it took was a New England October.

Weird, huh? But when I said that nothing has been normal about these last three years, that includes our four seasons.

Part of New England’s allure is our four distinct and seperate seasons, but these seasons have been anything but typical lately. I don’t think we have had more than two feet of snow fall during any of the last few winters, which is not how we roll in Connecticut, not that I’m complaining. It wouldn’t hurt my feelings at all if this is the new norm, provided we have something on the ground for Christmas.

The springs have been damp, cool and drearier than I remember. The summers have been hotter and more humid, which has been wonderful for the MS. Worst of all, our autumns, New England’s crown jewel, have sucked! I’m not an authority on the meteorological witch’s brew that is required to have a spectacular fall, but for the last few years the leaf colors have been muted and quickly turned brown before they withered and fell to the ground.

I’m not a leaf-peeper, and never gave two shits if the colors were great or not. At least I never thought I did. But Mother Nature has pulled out all the stops this year, and the results are both wonderful and oddly uplifting.

If you are born and raised in New England, you learn to take these kinds of things for granted. Part of the charm of living in this part of the country, aside from the fact that we don’t typically have to worry about hurricanes, tornadoes, earthquakes, mudslides, drought, or wildfires, is the unique beauty associated with each season. Autumns are always a double-edged sword because as much as you might enjoy the scenery, the leaves eventually fall to the ground, need to be disposed of, and can be a weekly pain in the ass if you don’t enjoy yard work.

But this year? Maybe it’s because the colors are so spectacular, or maybe it’s because we haven’t had this kind of foliage in years and it feels like rediscovering something precious that was feared lost, but Mother Nature is putting on a show, and it’s as inspiring as it is breathtaking.

The picture that leads this post is my neighbor’s maple tree that I’ve been enjoying every day for a couple of weeks, and the others are samples of what you might see anywhere you travel within the state. When the sun shines directly on these trees, the colors come alive and are so vivid and bright you might need sunglasses if you stare at them too long. When sunset arrives, they appear to glow in oncoming dusk. Everywhere you turn, there is a kaleidoscope of color: vibrant shades of yellow, orange, gold, and red.

The neat thing is as the leaves turn, they become progressively more colorful and vibrant until they reach their peak. We are at the point where some trees are still peaking while most are beginning the downhill side of that peak. As as October bleeds into November, the colors will continue to mute, the leaves will wither, turn brown, fall off the limbs, and swirl around in the air like mini cyclones when a strong wind kicks up. By Thanksgiving, the limbs will be bare, and we will brace ourselves for the harshness of winter, but not care as much.

For whatever reason, this brief return to normalcy has created an optimism that has been missing. What had been lost was found. Silly, I know, but the lesson learned is things are never as bad as they appear, and that it’s foolish to assume that something that has been missing for awhile will never return.

We will still have a lot of shit to slog through, the midterms and the 2024 elections for one. It will take time before we are whole again and could conceivably get uglier depending on whatever election shenanigans that might come into play. But we will slog through it and come out intact on the other side, and all one has to do is look at the 1968 as a reference point.

I was still a young boy and was clueless about what was going on. But if I go back in time and place myself in that era as an adult, I would have thought that the divisions in our society that Vietnam created, the political assassinations, civil rights strife and burning cities meant that the world I knew was falling apart, and we were all doomed. It didn’t pan out that way, so I am holding on tight to my October ephiphany.

I just wish I had spring to look forward to instead of winter.   Some things never change.

Making Up For Lost Time

My COVID hiatus is over.

After one year of voluntary isolation, and a second year of carefully and selectively picking my spots to re-enter the society, the gloves finally came off this summer. The month of hell I went through physically with a myriad of issues that all popped up at the same time was the tipping point.

My re-entry wasn’t without trepidation however, but not because I was afraid of getting sick. By now I already had the virus once, had been immunized, boosted, and given monoclonal antibody injections because of my immunocompromised condition.  I am as medicated as anyone can be, and assuming I refrained from being reckless or stupid, and kept current with whatever immunizations and treatments my neurologist recommends, I’m confident that I am keeping myself and my family as safe as possible. Besides, the virus isn’t going to go away any time soon, so it was time to get busy living again rather than existing.

My primary trepidation concerned the MS, and whether I was physically capable of doing the same things I did before the pandemic. Prior to 2020, I’d travel without question, see a number of Red Sox games in Boston without thinking twice, and do generally whatever the hell I felt like.

But two years for a person with MS is an eternity, and I knew that my physical capabilities had declined. Walking is harder, my balance is much worse, I trip over my feet more often (but still don’t fall) and I wondered if I remained physically capable of dealing with trains, planes, and crowds of people. Was my mind writing checks my body could no longer cash? I worried that I would put myself in a position where I would need assistance to do any of this and not have it readily available. Even worse, I worried about getting tangled up with crowds of people who are oblivious about who or what is around them, tripping over their feet and falling to the ground, making a general spectacle of myself. Fortunately, none of that came to pass, but travelling is much more cumbersome than it used to be. The day will come where I don’t enjoy it anymore, but I’m not there yet.

Being out in the world does feel different though. How could it not? COVID is part of life now, as it keeps mutating and evolving. I suspect it will be years before it is not a threat, so it is impossible to think, act or go about life believing nothing has changed. This does not hold me back anymore, but the difference between now and then is I back then I never thought twice about doing anything I wanted to do. If I had the time and opportunity to do something, I would do it, no questions asked.  

Now, I more calculating, and think about all the contingencies, scenarios, and what-ifs. I still won’t go into a public building without a mask and will eat outside when going to a restaurant if the main dining areas are crowded. I’m careful, but not afraid, and I think fear has been the biggest hurdle for most people, especially if they have conditions that make them more vulnerable to the virus.

I must admit though, I was becoming a little complacent regarding the risks out there given my string of recent successes, but life has a way of reminding you to refocus.

Case in point: Nidan, who had accompanied me on my most recent trip, had been coughing and commenting about a scratchy throat the last few days, but he is prone to allergies, so it wasn’t cause for alarm. Yesterday morning however, several hours before a group of family members were about to arrive for a gathering at our house, he said the cough and throat was worse and that he wasn’t feeling very well. So we home tested him for COVID and the results were positive.

Later that morning his fever spiked and he looked and felt like crap, so I am sure the results from the  PCR test he received hours after the home test will confirm the obvious. We had to scramble around to isolate him from the rest of us, and contacted everyone who had planned to come to inform them to stay away, while he notified everyone he had been in contact with the let them know he was sick. It will be a minor miracle if none of us get it, as it appears this had been brewing for several days and we have all been in close contact with him. This is the reality we all face, the difference being that while we may become ill, it won’t kill us.

So I am back in the saddle, and the generally apathy that has developed over the last two years is fading. Perhaps disappearing apathy will resurrect my desire to write. There have been numerous occasions where I have sat in front of the keyboard, started at the screen for a while, then shut the computer down because I couldn’t muster the words or the desire to mine them. There is a half-finished novel I haven’t touched in more than a year, and I keep telling myself I haven’t posted on this blog for months, so the itch is still there. But knowing something and acting upon it are two different things.

If apathy has not prevented me from writing, then I have a wicked case of writer’s block. The ensuing weeks should let me know, but whatever the answer, it should give me something to write about.

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.


While I do my best to concede nothing to MS, I’m not reckless. I do what my body allows. Over the years I’ve become very aware of my body mechanics and consciously think about them whenever I am moving for two reasons. The first is because if I don’t, falling becomes a real possibility because my balance is completely shot and it doesn’t take much to throw it off. As a result, I average only a few falls a year. The other reason is the progression has slowly devoured my leg. Starting in the toes and feet fourteen years ago, it has insidiously made its way to almost mid-thigh. The ankle and knee bend slightly to the right when I walk, so I know that one misstep could cause something to tear. Needless to say, I am careful to a fault whenever I am upright.

So why the hell did I wake up Wednesday morning with a stiff and swollen knee?

It had become swollen before, usually because of strain I put it under when I work outdoors, but nothing like this. The joint was uncomfortably swollen, and weaker than normal too. At first, I freaked a little because I assumed it was the MS. I never had that moment where I stepped wrong or twisted it. I never did anything where I had the searing pain followed by immediate swelling and throbbing. So how couldn’t it be the MS? I reached out to my neurologist and made an appointment to see him the next day.

As the workday proceeded, the joint got stiffer, and it became a little painful. Then I remembered a day when I was simply walking from one room in the house to another when I felt a sudden pain in the knee and the leg buckled. Body mechanics, I thought, because the pain stopped as quickly as it came, and didn’t last. It was like a bee sting in the sense that it happened unexpectedly, hurt like hell, but only for a second before it went away. It was more shocking than anything else, and once I stabilized myself the knee didn’t hurt, and my walking was no different than before the incident. I don’t remember when this happened, but it wasn’t recent, which is why I hadn’t thought of it earlier.

Maybe I should see a doctor, I thought. Just in case. Long story short, the word blood clot was discussed at one point, which really caught my attention, but ultimately an x-ray was taken and the knee joint was fine. It was swollen, but as they poked, prodded, torqued and examined the joint, I felt no pain. I thought they were going to drain the thing, but apparently there wasn’t enough fluid to warrant it. Instead, I received a tapered dose of steroids to be taken over six days, with instructions to follow up if the symptoms didn’t improve. They speculated that I could have a partial tear or some loose body floating around in there, but since there was no pain, there wasn’t any urgency. Not that I minded. I hate needles, which you might think odd since I get stuck multiple times in my arms every month, but there is a big difference between hitting a vein and sticking something much bigger into a joint. Maybe it isn’t as bad I assume, but I’m in no hurry to learn.  

I’m on day five of the meds now and there has been no improvement. It’s worse, although it didn’t start that way. The day after the examination the knee was less swollen and felt looser. I figured they were right and stopped worrying about it. I still went to see the neurologist the next day. He didn’t think it was likely that this was MS related but understood my feelings about the pace of its progression. We decided to have a new set of brain/spine MRIs because the last one I had was over five years ago, and I left his office feeling positive about things.

Three days later, I can barely walk. I know what the MS feels like in my leg, and this is different. I’ve always walked slowly and laboriously, but never gingerly. I am now because I can’t put any kind of weight on the leg without feeling pain in one spot in the knee. I’m not completely incapacitated, but when I am on my feet, I’ve been reduced to walking slowly in a straight line provided I have a cane to take some of the weight off the knee. Even inside the house, which is a first. Stairs are tough.

Well see how this feels on Monday, but I’m not optimistic. Over the next couple of weeks, I will have to shoehorn an appointment with an Orthopedist and whatever they recommend, with a plasma transfer and Ocrevus infusion, and a brain/spine MRI. Swell! I long for the old days, when I rarely went to a doctor for anything, and the only times I was in hospitals was as an employee, not every month as a patient like I am now. The main reason early retirement is not a serious consideration is because of my health insurance.

I know I’m jumping to conclusions about the knee. I’ve been off my feet most of the day, and it does feel a little better. But as you can see, the knee isn’t pretty and something still feels wrong. The only saving grace is the knee is in the leg affected by the MS, so I am used to not having the leg be able to do much. If this was happening to the good leg, I literally would not be able to walk.

So off to another doctor I go, hoping to get answers and solutions. One of the questions concerns healing with MS. If they scope the knee and repair stuff in a leg that is consumed by the effects of MS, does that impact or compromise healing? It’s a nerve thing, so I don’t think it should, but I am curious.

Regardless, this needs to get taken care of because I don’t want this to linger when the warm weather gets here. My life is sedentary enough.


It would be an exaggeration to say I’ve been a funk the last couple of months, but something has felt off that I haven’t been able to quite put my finger on. It isn’t pandemic fatigue, although it exists. I couldn’t articulate until it came out of the blue yesterday like a lightning bolt. I’m not sad, angry, or depressed. What I am is disconnected.

When you have MS, and your physical abilities are limited, you’re a little disconnected already because social things like golfing are off the table, travelling is a burden, and even going to places like the beach is hard. Your social agenda and calendar are limited to visiting friends or having them at the house.

We also have the socialization at work, where you feel connected to your peers and the organization you work for. Speaking for myself, I can always get a sense of the mood of the organization, and the political dramas that play out when I am in the office.  Almost two years of working almost exclusively from home made me realize I took that for granted, because now we are faces on a Zoom call. It isn’t the same.

The pandemic has changed a lot for everyone, but not all of it has been bad. We’ve learned not to take for granted some of the lowest paid employees that provide essential services, like day care providers, folks in the human services arena, the folks who store the shelves of our grocery and department stores, and the folks who work retail.

We’ve learned, I hope, how critical our healthcare employees and institutions are. I say I hope because I know that nurses and doctors are burned out from not only two years of being on the front lines, but because this most recent surge has brought out a lot of the ugliness that resides on our society today. How else can you explain the anger and vitriol they have had to endure from those who choose not to heed the advice to get vaccinated, are angry about the consequences of their choices, and vent their spleen on those charged with taking care of them?

Being disconnected lends itself to feeling isolated, alone, and completely detached of communal support about anything. We all want to be accepted and feel like we are part of something bigger than ourselves, but it’s hard when you feel like you are on your own and nobody cares. It robs us of optimism, self-esteem, and happiness.

I suspect COVID will be in our lives for some time. We will learn to adapt to it, and a new normal will evolve that allows us gather without having to think about the likelihood of getting infected. Some would argue we are already there, but when you have surges that push the infection rate from two or three percent to over twenty, I beg to differ.

 Some of the things that have evolved from this are here for good, and working from home will be one of those things, especially for people who aren’t in a field that requires being face to face with a customer, patient, student or client, like me.

I plan on going into the office once or twice a week this spring, when the weather is warmer and the infection rates are (presumably) back to the two the three percent range, and know others who feel the same way. We’re hoping it will help alleviate this feeling of isolation and being disconnected from anything normal or routine. If not, we may have to throw caution to the wind, continue to do what is needed stay reasonably safe from getting very sick or dying should we become infected (like getting vaccinated/boosters) and live life instead of existing.

Because the status quo really sucks.

I’m in shape. Unfortunately it’s the wrong one.

If I had to pick one word to describe 2021, it would be deprivation.

Don’t get me wrong, there was a lot to like about 2021, January 6th and the fallout that continues not withstanding, and it was a hell of a lot better than its predacessor. But we all have pandemic fatigue, and you can’t deny that the way the year ended was a bitter disappointment. Variants are raging, and we still can’t get our shit together and agree to make the common good our priority because we can’t agree on what that is.

As good as the summer and early fall months were, my general outlook tanked when things started to tick up again, which wasn’t helped by a ten day period in early December where four distinct obligations were crammed together, the most pleasant of which was a colonoscopy. That period pretty much epitomized the state of my morale as the holidays approached. Then something happened that got my attention and out of my head.

A number of my blogging compadres, who also had also seemed to have gone radio-silent like myself, re-emerged. First it was Tom, then Grace decided to challenge herself by posting something every single day this year. Then I thought about Superman’s good fortune, perhaps sobered up a bit, and began to think about why I was so down.

There were a number of reasons, pandemic fatigue first and foremost. But one was the fact that I hardly wrote at all last year, my blogging output for the entire year being four posts. Four! I wrote so little that it was a struggle imbedding links to this because I forgot how to do it.

Not only that, I hadn’t touched novel number two in six months, and while I wanted to remedy both of these situations, the motivation was lacking. And on those rare occasions when the motivation came, the words did not.

Plus I was sick and tired of being stuck in my house because the infection rates in Connecticut were the highest they had ever been. It felt as if I entered a time warp and it was March 2020 all over again.

But if I’m brutally honest, there is one primary issue that caused my morale and optimism to take a nosedive.

I’m fat.

Like I said, 2021 was year two of the deprivation parade. There was so much I felt I couldn’t do to keep myself and loved ones safe, that I embraced some of the simpler pleasures in life that were pandemic proof, and most prevelant among those things were food and beverages.

And why not? I had given up so much, what’s wrong with a little endulgance? Unfortunately, “a little indulgence” wound up being a campaign of not necessarily eating too much, although that was part of it, but eating and drinking the wrong things at the wrong times.

I knew it was happening too, but didn’t care. Slowly but surely, my clothing became snugger and a good chunk of my wardrobe was no longer an option. But when you are working from home all the time and are in your sweats most of the day, what does it matter?

The first harbinger that I had perhaps let things go too far was when I put a dress shirt on for the first time in two years and had a hard time buttoning the collar. I got it done, but it felt like I had six pounds of sugar stuffed into a five pound bag. I suspected I was heavier than I thought, but deluded myself into thinking it wasn’t that bad and let the thought pass.

That all changed when the ultimate humiliation occurred a week or so later. I was trimming my toenails and struggled like hell during the process because my gut kept getting in the way, making it hard to bend, reach what I needed to reach, and breathe while I was doing it.

That was the tipping point. Realizing there was no point in kidding myself anymore, I climbed onto the scale, steadied myself, and looked at the digital numbers for the first time in a long time.

I had gained over twenty pounds since the pandemic started, but I was already five to ten pounds overweight at the time, so I am officially heavier than I have been in at least twenty years. No, strike that. I’m not heavy. I’m fat. Fat, slovenly and disgusted with myself. Standing naked in front of the bathroom mirror to assess the not only the volume of the mass that had accumulated, but the flabs that had emerged, was humbling to say the least.

But now I have something to rally around and focus on. I’m a stubborn guy, and once I put my mind to something it usually happens. I’m more than motivated to right this wrong, so I look at the new year as a time to forge a new attitude, and take control of my body.

My quest is to lose twenty five pounds in the next three months (but will settle for twenty), then keep it off, which has always been the hard part for me. Nonetheless, accomplishing this will make me look and feel better, which will improve my general attitude and outlook. Walking and maintining my balance is hard enough with the MS, so lightening the load can only help improve my mobility and make simple tasks easier.

The most important thing however is that I’ll feel Iike I’ve done something to take control of life instead of managing it like a cork being carried by the pandemic waves, content to drift wherever it takes me.

At least that’s the plan. We’ll see how it turns out. The first important step is getting on a scale that first time after the diet officially started because the result will either generate momentum for the upcoming weeks of deprivation or will make me want to say the hell with it, in which case you may not hear from me in another three or four months.

PS: This was written earlier in the week but I didn’t get around to proofing it until today, which was weigh in day. SUCCESS! Won’t tell you how much I lost, but I will say it was a pleasant surprise. This may work out after all!

The Ant Bully

Yeah, I know. It’s been a while. Three months to be exact (YIKES). I never expected that to happen, but it has been a weird few months in both a good and a bad way. The good is that unlike last year, socializing has become a thing again, which has been great. But it has left me wanting for more, and my patience, which has always been a strong point, is wearing thin.

Unexpectedly, my life has become quite mundane, other than the socializing part. These last few months have evolved around work, the house, medical shit, and a death in the family whose aftermath has yet to play out and will in all likelihood leave long lasting scars and animosity.

The ironic thing is that even though this year has been night and day compared to last summer, it has been harder to navigate. Perhaps it is because the circus (That was a slip because I meant to write virus) is still with us. There are actually several cases in our town, which I had not heard of in a long time, and even though Connecticut is one of the healthiest states as far as vaccinations and the virus is concerned, the rates are at their highest levels in a long time. I am sick and tired of the fact this country can’t get its shit together and agree on an approach that rids us of this scourge. What’s worse is that I don’t see it changing any time soon, given the selfishness of our population and the politicization of the issue. It’s depressing to think how much longer we will sink into this morass, and I am not looking forward to what the winter has in store.

The primary casualty of these eighteen months has been motivation. I expected novel number two to be mostly done by now, but I haven’t sat in front of the keyboard to type one word of it in months. Everytime I have had an idea for a post, it disappeared like fart in the wind when it came time to actually write about it.

I’ve had three weeks off this summer with not much to show for it, other than some stuff around the house. All you need to know about how mundane life has become is one obsession that I have become consumed with. It has galvanized my focus and, at times, turned me into a raving lunatic, unleashing murderous thoughts of violence, creulty and extermination.

What has created this toxic brew? Ants!

We’ve had ants before, but they were manageble. Most of the time, they were outside and you could see the swarms. But when they strayed into the house, a dose of boric acid and sugar around the perimiter of the foundation would do the trick.

We moved into this house in October 2019 and last year had occasional ants in the kitchen. But they were managable. I don’t know what happened this year though. We have gotten a ton of rain this summer (wish my west coast friends could have had half of what we had) so maybe this is flushing them out. Traps aren’t working one bit.

Instead of seeing one or two stray ants occasionally trek across the light maple floors, you see one or two at different parts of the house at different times of the day. Every single day! If you drop a crumb or something sweet or oily on the floor, they swarm in bunches. These are the little bastards too (thankfully), so when you see a dark cluster surrounding something on the floor you know there are a lot of them. It got so bad that when we woke up yesterday, they were actually crawling up the cabinets into the pantry, up the cabinets where some of the dishes are and the door where the kitchen garbage is. They were invading on multiple fronts and it felt like we were under seige! A dark, malevolent spirit consumed me, and I wanted to inflict hellfire and eternal suffering on these unwelcome intruders.

Instead of fireboming the place, cooler heads prevailed, which meant a thorough inspection and cleaning of the panty to see what was luring them, which is exactly what I want to be doing before breakfast. It turned out that a box of Cheeze-Its was the culprit, as I discovered two ants crawling up the side of the box and decided to explore what was inside. How they got in the box and the closed bag inside it is beyond me, but there were at least a couple of dozen in there and it pissed me off for the rest of the entire day and night. Needless to say, that box of crackers was tossed.

And we just aren’t finding them in the kitchen, although that is where the bulk of them hide. They are in the bathroom, the hallways and bedrooms. It is as if they have found the mother lode somewhere and keep sending out the soldier ants to forage.

It isn’t as if we’ve done nothing to remedy this, but nothing has worked. We have deployed traps in and out of the house, sprayed where we believe the bulk of them are with everything but boric acid (which has become hard to find for some reason) on more than one occasion, but the problem has been getting worse.

I have truly come to hate, and I mean REALLY hate, these little motherfuckers and wish I could somehow nuke them all into oblivion. Admittedly, this is a control issue more than anything else. Things are bad enough dealing with the pandemic and its fallout, and it feels like we have no ability to control or influence our external environment. It is too much to ask to feel safe, unviolated and in control of the environment at home? While I would not categorize this as an infestation, it is certainly a problem that seems to be getting worse instead of better.

I have become a neat freak, which is definitely not me. Everytime the I see something fall on the floor, it has to be vacummed or mopped. Everytime something is prepared on the counter, the counter needs to be wiped down. Dishes immediately into the dishwasher, not the sink. I am consumed with finding an answer because this can not stand!

Maybe this is the kick in the ass I need. It certainly has my undivided attention and has gotten me to post something for the first time in a long time. I know the winter will bring a period of solace, but we need to somehow find and kill the nest otherwise next year will become another year of discontent, and something more toxic will have to be employed.

Then maybe the peace and tranquility that has been so elusive for so long will being to settle in. In the meantine, I will have to be satisfied with finding them on the floor, pinching them onto my index finger, and slowly crush/pulverize them between the index finger and thumb. Hopefully their screams reach their colony and they learn not to fuck with me anymore.

A guy can dream, can’t he?

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