Category: MS

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.

Aging

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?

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.

Disconnected

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!

January 8, 2026

Having been cooped up at home for fifteen months made me realize a number of things. For instance, I have enjoyed working from home more than I ever expected, so much so that as we ease our way back into the social fabric, I’ll continue to spend more time working from home than in the office.

Another is the realization that as much as I have compartmentalized it, my disability is real and has become more pronounced. I have to take it into consideration every time I do anything physical, whether it be as benign as getting into and out of bed to cleaning the house or helping with outdoor work. I’ll write more about this later, but the cold fact is that every physical activity I undertake is hard because I am less stable and prone to falling more than ever. I used to think of myself as an able-bodied person who had a hitch in their giddy-up, but that has changed. I now identify myself as a disabled person who fights like hell not to think like one. The difference is subtle, but it is real, and it sucks.

The biggest epiphany has been that working from home has given me a taste of what it might be like not to work anymore. The idea of retirement used to be this vague notion that I knew was somewhere down the road but wasn’t a real thing. Not anymore. It is real, and it has a date: the title of this post.

I have exactly four years, six months and thirteen days to go. I don’t have a calendar where I cross off the days, or some kind of mental countdown. Nonetheless, having a milestone like this less than five years away makes it seem very close and very real, so much so that I am beginning to consciously plan for it, which is a first.

The idea of what I once thought of as being put out to pasture used to be anathema, but now I welcome it. Not because I hate my job, hate working, or hate the people I work with, but because of the freedom it brings. Maybe it is part of getting older and the mindset that goes with it, but I enjoy not having to shave or get dressed up every day. I enjoy my time off more than ever and actually look forward to it. This tells me I am ready to take the plunge when the time comes. Perhaps being physically seperated from my colleagues all this time has made it easier to embrace the concept, but there is no denying I have no doubts about my ability to enjoy retirement.

I’d consider an earlier date, but there are economic realities that prevent it. I need to finish paying for this house, so having a steady income certainly helps. My treatments are cheap and are going to continue for the foreseeable future, and I have excellent health insurance that meets my needs. Why mess with that?

Four years, six months and thirteen days give me more than enough time to chip away at my debt while continuing to grow the assets we will need to live on, and I don’t want to leave anything to chance. I want to be able to afford the health insurance I will continue to use need and use, and not have to worry about making ends meet. There is a certain number I have in mind, and we are close to getting there. Plus the full retirement age for social security benefits is sixty six years and ten months, (I’m not going to wait until I am 70, which is the max benefit age) so that is the target date.

The one thing I need to be sure of is that when the day comes, I have something to do that I enjoy and will occupy my time, because hanging around with nothing to do other than watching the minutes tick by is a fate worse than death. I doubt travelling will be on the agenda because the reality of dealing with crowded airports and jetting off someplace to see the sites is a lot more cumbersome and complicated than before.

I was never a gardening kind of guy, so that’s out. I got rid of my golf clubs ten years ago. I was never into fishing, but even if I was the same physical issues remain. So that leaves writing, and the one thing retirement will do is eliminate the excuse that I’m not writing as much as I would like because I don’t have the time.

For the last several months I have hardly posted anything to this blog and, with few exceptions, I haven’t devoted many hours working on novel number two, even though it is almost half-way done, because I work long days and don’t have the energy or desire necessary to produce anything good. That won’t be the case anymore when January 8, 2026 rolls around, so we will find out if that excuse was legitimate or bullshit. Maybe I’ll even resume painting, which I did a lot when I when much younger. I could also spend more time cooking, which I’m sure K wouldn’t mind one bit.

I have a lot of time to figure out what I will do, and a lot can change between now and then. The point is I have options and am actually looking forward to having to make those decisions.

Let’s hope my body cooperates.

Existing

Ever since Inauguration Day I have been in a funk. I had been so crazed and consumed about what was going on politically since Labor Day that it occupied any down time that existed. And the fact that I may not have enjoyed what I was hearing from day to day was irrelevant.

Now that a new administration is in place, I have stopped following, watching, and obsessing over the news because I really do hate politics. What’s the difference between now and then, you may ask? The difference is my previous obsession had nothing to do with politics. It had everything to do with me feeling unsafe in my own country with a demagogue doing everything he could to hold onto power and sow division, in addition to not having a government that had a clue about how to address the raging COVID spread.

Now that those concerns have been alleviated, I am no longer obsessed. I keep tabs by watching the newsfeeds that cross my phone apps, and choose to dive into whatever strikes me, which hasn’t been a lot. So all of a sudden, I have a void to fill with little to replace it. Instead, I have been very introspective, which is rarely good. The byproduct of all my deep thought is this: we aren’t living, we are existing. It sucks beyond belief, and keeps sucking more with each passing day.

For me, this is about enjoying life and having shit to look forward to. You could argue that we do have something to look forward now that there is a vaccine and a light at the end of this long, dark tunnel that isn’t a speeding sixteen wheeler. That is difficult however, at least for me, because we have had to live in isolation for the last eleven months to stay healthy. Each passing week feels like a month, and while we are on the downhill side of this, I am sick and tired of the waiting.

We haven’t had much personal connection with human beings outside the family. Instead we Zoom or Skype, and while that is better than nothing, it isn’t the same. I have been working from home exclusively during this span, and while I have taken to it more than I thought I would, all that family closeness can get on one’s nerves. We are all experiencing similar things, are on edge, grumpy as hell, and quick to show our frustration, which often comes out as anger. Patience has become a scarce commodity.

Unlike my son, who loves nature and the outdoors, I can’t hike in the woods, go exploring, or even take long walks because of my physical limitations. Travel and vacations are non-starters, so all I have left is television, reading, computer games and my imagination.

I was never a big TV guy to being with, and there isn’t much good left on Netflix, Amazon Prime, Hulu, Peacock, or any of those platforms because we’ve watched all the good stuff and there is little to replace it. Winter sports only provide so much diversion, and even those can’t be relied upon because the virus keeps upsetting the schedule and postponing games. Baseball is at least two months away if not more. Reading requires motivation and enthusiasm, both of which are in short supply. So does writing, and the novel has therefore been a slow go.

And far as my imagination is concerned, it isn’t very fertile, otherwise the novel would be a lot further along than it is. My powers of observation remain strong and could be used to my creative benefit, but the only epiphanies I have had been are mundane and self-absorbed.

For example, I have observed that the knee on my bad leg is swollen and misshapen, probably because my gait changed a long time ago and my foot never points forward, but at an angle. I have observed that the hair on my legs, of which there used to be a lot, is gone. I have also observed that my skin has become paper thin because it cuts easily and bleeds like hell when it does. For example, two nights ago as I was getting ready to take a shower, I noticed a big splotch of dried blood that was the size of a silver dollar on my shin, and I had no idea what caused it or that it had even occurred. When I cleaned it up there were two wounds that looked like punctures, but I don’t remember hitting myself or banging into something, and this isn’t the first time this kind of thing has happened. I have since concluded that the hair and skin must be the result of all the heavy duty MS drugs I have taken and continue to take.

This then leads to me wonder what the consequences are going to be resulting from the fact I have suspended treatments two months longer than normal because I can’t do those AND get the vaccine. Will this allow the symptoms to progress, and if so will the changes become permanent? I don’t think like that when I’m busy and engaged.

In hindsight, one of the reasons I let my hair and beard grow was because it was something new and gave me something to be focused upon and be entertained by. But like everything else during this shit show, both got too unruly and unmanageable. My mother-in-law told K that I looked like Father Time, for God’s sake. So I hacked the beard off but was at a quandary about what to do with the hair because I didn’t want to go to a salon. I finally said fuck it, and had K cut it. She did a great job too. The end result is hair that is the shortest is has been since I went to basic training over forty years ago. On the plus side, everyone says I look ten years younger.

As rosy as the future looks compared to eleven months ago, it is mentally draining trying to stay upbeat and optimistic, and this is coming from a guy whose glass is always half full.

Thank God for work! I am lucky as hell that my work situation has not been compromised or interrupted in the slightest. If I didn’t have that, I don’t know what I would do, other than freak out about keeping the house and supporting the family. I realize many are in that unfortunate situation, worrying about food and shelter every minute of every day. So in that regards I feel silly about complaining or being maudlin because all my stuff is superficial and selfish by comparison.

See, the optimistic, glass-half full, things will be better, don’t worry-be happy guy still exists. Still, this shit can’t end soon enough! And when it does, I want to throw the biggest, longest, most outrageous, anything goes celebration that lasts an entire weekend.

Everyone is invited!

Good Riddance

Photo by Oleg Zaicev on Pexels.com

I don’t think I have ever looked forward to the turning of a page to a new year than I have this one. While I suspect we won’t be back to whatever a new normal is until late 2021 early 2022, and that these next three months are going to be among the worst we have experienced so far, at least there is an optimism that we are finally on the downhill side of this thing.

Given this year was an exercise in futility, it is all the more reason to be optimistic about the future. After all, when you hit rock bottom, the view can only get better from there. So in that spirit, here are my resolutions for 2021

1. STAY HEALTHY: The vaccines are here and the rate of the virus’ spread is skyrocketing. Some states are worse than others, obviously, and there appears to be a new variant that is more contagious, but hope is on the way. I have read stories of how combat soldiers who are close to the end of their tour fear the last few weeks/months the most because they are so close to surviving that hell and live to tell about it. I feel the same way about the virus, so we’ll keep hunkering down and try to stay out of the fray. Losing anyone to this thing at any time is devastating, but having to deal with that now at this stage of the game would suck beyond compare.

2. STOP BEING A NEWS JUNKIE: There was a period of time where I couldn’t get enough of the evening news programing. I was glued to the developments of the virus spread, what we were (or weren’t) doing to effectively combat it, not to mention the election campaigns. All this did was fuel my anxiety, frustration and anger to the point where I didn’t like myself. So I haven’t watched a single episode of any of that programming in over a month, and I hope to keep it that way. It is better for me to stay informed via print because it isn’t so in your face, and is something I can choose to read or skim over. Sometimes ignorance is bliss.

3. WRITE NOVEL #2: We are stuck indoors with nothing to do, so if I don’t take advantage of the situation this might not ever happen. I started in earnest a few weeks back, and was surprised to discover this wasn’t going to be easy. I had to write an opening for a plot that centers around several pieces I wrote a couple of years ago. The good news is that once I started it became a habit, like I suspected it would, and and I finally have some momentum going, but the bad news is this is not coming as easily as the first one I wrote. I actually wrote two versions of the opening that I wound up deleting, but the third attempt turned out to be a charm. I haven’t revisited it in a couple of days, but that turned out to be a good thing because while I was working out an epiphany came regarding how the rest of the story could proceed, so at least I have a roadmap to follow. I couldn’t say that last week. So the hook is being set, and I just need to keep it moving forward. Of course, the will mean less time for posting in this space, but perhaps I can still manage a post or two a month.

4. MAKE FRIENDS AND FAMILY A PRIORITY: It isn’t like I’ve ignored them, but be honest. How many of us have had the opportunity to meet with our friends or relatives, only to beg off or postpone it because some other “priority” got in the way. Given most my interaction with human beings has been of the Skype/Zoom variety since this all started, I have a much better appreciation for personal contact. I’d give anything right now to gather with friends over a good meal or some drinks, and bathe in the warmth of their company. I suppose being deprived of anything makes us appreciate it more, but if this pandemic has taught me anything, it’s that good friends and a supportive family are like gold, and should not be taken for granted. I am hoping that the one positive thing I take out of this shit-storm is to make spending time with them a priority. Everything else can wait.

5. GO TO A SPORTING EVENT: I have a Red Sox partial season ticket plan, and last year was the first time in a while that I can remember where I didn’t go to see a single game. Being able to see them in person this year would mean that the pandemic has subsided to at least the level where it is safe/safer to mingle. I doubt I would go if the stadium is packed until 2022, but I would love to go to a game where perhaps they have about one-third capacity and everyone is distanced as far as seating is concerned. That would certainly be an indicator that normalcy is on the way.

6. NAVIGATE THE VACCINE – M.S. QUANDRY AND COME OUT OF IT UNSCATHED: What does that mean? Well, I get heavy duty drugs infused every six months, and get my blood filtered via plasma transfer (PT) ten times a year. My next infusion and PT is scheduled in a little over two weeks, the hospital I work at is starting the vaccination process, and there are a lot of unknowns. Specifically, if I get the meds and then the vaccine, how are they going to interact? Are the side effects going to be worse? Am I going to have to defer the MS meds for longer than I am comfortable with? Also, depending on when I’d be eligible to get the vaccine, how long will I have to go without getting the PTs? I know I will have to get two doses spaced three or four weeks apart, and my PTs are also spaced four weeks apart. The problem is that these procedures filter any medicine out of my blood stream. So how long does the vaccine need to stay in one’s body to do its work? That’s important because when all this started, I went more than two months between PTs and it was not good for the MS. My symptoms got worse and never fully improved afterwards. I know what COVID does, so the vaccinations are the lesser of two evils, but I am truly concerned about this because I can’t escape the feeling that in order to save myself from COVID, it will make the MS worse. Perhaps permanently.

7. GET OUT OF BAD HABITS: Since this all started, my alcohol and MMJ intake has escalated. I suppose this doesn’t make me different from many, but I have gotten into a pattern where the MMJ has become a mostly every night thing, and instead of having a drink maybe every couple of weeks, I’ve graduated to every weekend and some week nights, depending on my mood. So while I’m not concerned about not begin able to get off that train, it would be naive to think this is a good thing. But it has served a purpose, which is to numb myself from this shitty reality. Especially at night.

8. BECOME MYSELF AGAIN: I’ve become much more introverted and introspective during these last nine months. I’ve become angrier, less patient, and more judgmental. That isn’t me, and I’d like to think it’s a by- product of the forced isolation. A major attitude adjustment is needed, and I’m hoping that as the curtain slowly closes on this sad episode of our nation’s history, my optimism and kindness of spirit will rise from the ashes.

Happy New Year everyone! May the new year bring peace, happiness, and above all health, to you and your loved ones.

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