Goodbye, Old Friend

Back view of couple waving hands to the sky

 

The day I thought would never get here has come and gone. The house is sold.

I have posted 156 pieces on this blog since its inception in 2017, and housing is the subject I’ve written about the most. Starting with this one in November of 2017, I’ve written about the old place and the new place in some fashion twelve times in two years, with the latest one coming last November. I hadn’t written about it since because I was frustrated and disgusted with the process, and very concerned about our financial future.

To re-cap, we planned on selling the house last year, and reap the benefits of the energy efficiency built into the place through tax credits we’d receive this year, but it didn’t turn out that way. The new house took longer to build and we moved in October, which is not a great time to sell,  instead of August. For a variety of reasons, the place didn’t sell, winter came, and we took it off the market. Thus started our winter of discontent.

We dropped the price and placed it back on the market in late February. We were getting interest and had reason for optimism, then the virus hit and things came to a screeching halt for a little more than a month. When the surge in Connecticut came and went, we had a flurry of activity before traffic stopped dead. Starter homes were selling great, but not so much houses in our price range.

June was arriving, the weather was great, the house and yard looked great, we were entering the peak selling period, and nothing was happening. No visits, no showings, nothing. We were already nine months into owning and paying for two houses, were hemorrhaging cash, had no prospects and needed to sell the place before summer’s end because we could only sustain this for so long before we’d be broke. The outlook was bleak and so was our mood.

I learned to despise HGTV, because I believe it spoiled people and created unrealistic expectations about what a house should be. Our place was well maintained and in great shape after almost twenty years of existence. It was energy efficient, and move-in ready. But some of the feedback we received from pervious showings indicated some folks didn’t like things we thought were very nitpicky and could easily be taken care of once they moved in.  But they either weren’t interested or too lazy to do it themselves..

Desperate times call for desperate measures, so we took the house off the market again and we changed real estate agents. Our new agent was passionate and enthusiastic about her work, loved the house, believed in it, and her upbeat personality was infectious. What we had been doing obviously wasn’t working, so at her suggestion we agreed to put some money into the place and repaint the downstairs and change the flooring upstairs.

I have to admit, even though I hated spending more money on the place, the changes were stunning! It made a world of difference visually, and made the entire downstairs look much larger. I was wildly optimistic that we would finally find a buyer, but the day before the house actually went back on the market, the old fears started creeping in again. What if we spent all this time, effort and money and nothing changed? What would we do then? I was scared shitless, quite frankly.

Well, the first showing was booked the same day it went on the market, and four more were confirmed within the next 48 hours. We had five showings in three days, and accepted an offer a few days later.

To make a long story short, because nothing ever comes easy for us as far as real estate is concerned,  we didn’t get what we hoped for, and had to spend a little more cash to mitigate something that came up during the inspection that came as a complete surprise, but our long ordeal is finally over. The day I feared would never come has arrived. Halle Fucking Lujah!

But, and you can’t make this shit up, our real estate luck made the last several days nerve wracking, as Tropical Storm Isaias hit Connecticut.

As the storm made its way up the coast earlier in the week, K and I joked that with our luck, something would happen to the old place. Keep in mind that the closing was scheduled for Friday, and the storm was scheduled to arrive on Tuesday. The storm actually tracked a lot further to the west than expected, so it did not last nearly as long as anticipated, but it packed a wallop. Trees and wires were down all over the state and our town was no exception. We thought we came out of it unscathed until our neighbor from the old place called to let us know that a tree was resting on the garage roof on the house we were scheduled to sell in three days.

Fortunately, the secondary branches that extended from the tree hit the ground first and cushioned the blow. There was no structural damage to the roof or building, so “all” we had to do was find a professional who could get rid of it in thirty six hours. That fortunately happened, as the tree was taken off the roof on Wednesday night and completely removed the following morning. We were thrilled it all came together, but we had to dump another $1,000 for the privilege.

The closing went as scheduled without a hitch, and occurred yesterday. The windfall we expected to bank from all the tax incentives we earned making the place as energy efficient possible went towards paying the expenses on the old place. We didn’t net anything close to what we hoped, but can live with it. With all the uncertainty going on with the virus, our economy in a freefall and the political and social unrest in this country, we are thrilled that the financial bleeding has stopped.

We are also thrilled that a nice young couple with young children, who fell in love with the place and who I believe will love it as much as we did, are the new owners.

It is a very happy day indeed, but also bittersweet, which caught me off guard because I have been yearning for this day to come for what feels like forever. In retrospect though, it shouldn’t be surprising. We lived there for twenty years. Nidan grew up in that house, arriving as a two year old toddler and left as a twenty two year old young man. There were good times, bad times, happy times and sad times. We grew together as a family, and K and I spent most of our middle age there.

The house we are in now can finally start feeling like a real “home.” We can enjoy it without worrying about something else. Hopefully will enjoy a long period of peace and harmony as we ride out our golden years in our brand new abode. Being able to start saving again will be a novel and welcome experience too.

I wrote about the new place as it was being built, and shared pictures of the outside, but held off posting pictures of the inside until this day came. So now that it is here, let me reintroduce you to the new place.

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Evansville Heat

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I’ve been a bit of a sloth lately. I don’t have a lot of energy or motivation to do much of anything. Some of it has to do with an upcoming event that we have literally been waiting months for and has lately monopolized my thoughts, (which I will write about soon), but most of it has to do with the weather.

I bitch and write about the heat and humidity every summer, primarily because the MS makes dealing with it infinitely worse, but we’re not soft up here in New England. We get our share of frigid temps in the winter and hot, humid days in the summer. But what is noteworthy about this recent stretch is how long it has lasted. We are heading into a second week of 90+ degree heat with a heat index sniffing and sometimes exceeding 100. We aren’t even through July, and this is shaping up to be one of the hottest summers on record, which has brought back some memories.

I moved in Evansville, Indiana in the mid 1990’s when a career opportunity arose, and lived there for three years before returning to Connecticut. I enjoyed my time there. The people were wonderful, the geography was significantly different but pretty in its own way as the lack of hills and trees created vistas of flat, open expanses. I loved the central time zone too, because I could usually watch whatever I wanted and still get to bed by 11, which allowed a full-night’s sleep. The only downside to living there were the summers.

If you look at the map of the United States, Indiana is shaped like the letter J, and Evansville is near the tip of that J, tucked along the banks of the Ohio River, in the southwest corner of the state bordering Kentucky and Illinois. For comparison’s sake, it’s longitude would be equivalent to the Virginia/North Carolina border to the east and Southern Nevada to the west. I was warned the summers were hot, but there was a world of difference between hearing that and experiencing it. I have NEVER lived in a place where the heat was that oppressive.

I have always preferred to sweat then freeze, but those summers took some getting used to. From most of Memorial Day to Labor Day, the daytime temps ranged from the mid to upper 80’s to triple digits, and it felt as if the humidity matched the temps. It is the only place I have ever lived where it felt hotter at 7PM than it was at 3PM. Being landlocked, the heat just kept building and building throughout the day, and venturing outdoors felt like walking into a furnace. The heat and humidity was almost suffocating. You’d burst into perspiration as soon as you stepped outside, and soon thereafter you felt like you were wrapped in a moist, hot, steaming blanket. It’s no wonder that part of the country gets horrific thunderstorms and tornados. The heat has nowhere to go.

How hot was it? In 1997 we built our first house, but had a falling out with the contractor and fired him before the roof was completed. To make a long story short, my father-in-law became the job site foreman, K took over the general contractor duties, and I spent whatever free time I had at the building site.

I took one week off in July to lend a hand and clean the site of all construction debris. Each day, I would arrive at seven, work until two or three, and typically bring two gallons of Gatorade with me because I knew I’d lose a lot of fluids and I didn’t want to get dehydrated or cramp up. I’d start guzzling drinking Gatorade around 8 or 9 in the morning, and finish both gallons before I left for the day. The sweat was leaving my body so quickly that I only emptied my bladder once in eight hours while consuming 256 ounces of liquid. When I returned to the apartment and sat after taking a cool shower, my body felt like a limp dishrag. I was completely wrung out.

On the plus side, while it did get chilly in the winter, the temperatures did not get below freezing very often, we didn’t get much snow, and I could spend a February afternoon outdoors and be very comfortable wearing jeans and a sweatshirt.

I enjoyed my time in Evansville, and still think wistfully of those days. We had some great experiences, but have no regrets about coming home, especially now that MS is my constant companion. The summers would have been devastating.  If I’m having a hard time dealing with a New England heat wave, I can’t imagine what coping with the Evansville summers would be like. I’d have to be nocturnal, which isn’t practical, not to mention impossible if your job does not allow it.

I suppose I’d figure out a way and learn to cope, but still. There is heat, and there is Evansville heat. This got me to wondering how people in the midwest or deep south who have MS cope with the oppressively hot summers.

If you are out there reading this, I’d love to know.

 

 

 

 

Drugs

I was a compliant kid growing up. Eager to please and never wanting to incur the wrath and disappointment of my parents, I toed the line through my high school years in terms of alcohol and recreational drugs. Part of this was because I went to a private school and lost connection with my local peers, and part of it was because I was living at home. While I was a pretty good actor, I knew I wouldn’t be able to hide the fact I might be stoned or drunk, and it wasn’t worth dealing with the fallout.

That all changed once I went to college though, and I was free from supervision and judgement. I never went crazy, and always steered away from the hallucinogenics or anything I considered hard-core because they scared me, but did dabble with pretty much everything else, primarily out of curiosity to see what they felt like.  None really stuck besides MJ for a variety of reasons, but even that died a slow death once my career started in earnest. My “drug use” resurfaced almost thirty years later in 2010 when I started getting IV meds for my MS.

I had no idea or concern about how these meds would make me feel, partly because I trusted my doctor and partly because I have always been curious about how pharmaceuticals impact one’s body. It didn’t take long however for me to realize that what I dabbled with in my twenties were minor league compared to the kinds of meds dispensed at hospitals or pharmacies.

First there was the steroids. My maiden experience with these were over a three day period at home when a visiting nurse came to the house to hook me up and explain what to do over the next few days.

The initial impact was immediate and somewhat miraculous. Compared to where I am today, the leg at that time was a lot more functional, and probably eighty percent stronger. I didn’t have any major balance issues, but I could not walk without a limp, my foot dragged and I could not run or jog. Within twenty four hours of the day one infusion, I noticed an immediate improvement, and after day three I was walking normally. No limp, no dragging foot, and I could jog easily. It was as if the MS magically disappeared. I was astounded! Unfortunately, this respite lasted about ten days before the symptoms started coming back.

Be that as it may, within twenty-four hours of the last infusion, the side effects came. I was flushed and felt warm, and my face looked like I had been in the sun all day. Plus I was ravenous, and no amount of food I stuffed down my throat would satisfy the craving. I was uncomfortably bloated and felt like beached whale. I woke up the next day greeted by a case of  chronic hiccups that lasted for three entire days, and I literally mean morning noon and night. I would occasionally get a respite of twenty minutes or so, but that was it. Sleep was next to impossible. It was once of the worst experiences of my life.

I’ve never done the three day course of treatment since, even though I have always had that option, because of that one experience. I continue to get a smaller dose of steroids every time I have the plasma transfer, but the hiccups that result are confined to one day and they are episodic, so I can deal with that. If they get really bad, and they usually do at night the day after the treatment, a healthy dose of the medical MJ stops them in their tracks.

Then there were the chemo meds. Every month without fail for about seven or eight years, I received an infusion of 600mg of Cytoxan. I jokingly called them “flu shots” but was warned that this was no flu shot, and I would be wise to take a day or two off after the infusion to rest.

I received the infusions on Friday. I would feel like I was coming down with the flu by Friday night, and I was absolutely useless on Saturday and Sunday. I believe one for the first posts I wrote, entitled Zombie Land, described its effects in addition to all the other treatments and procedures I had put myself through up until then, so I won’t rehash history.

But I had no energy whatsoever. I couldn’t even lift my head off the pillow, and walking to the bathroom felt like walking though a vat of liquid caramel. Speaking took a monumental effort as did anything else remotely physical. And the dreams! They were intense, and while the sex dreams were fun, many of the others were bizarre bordering on hallucinogenic.

I vividly remember having a dream where I was in my bedroom, feeling tired, sweaty and aware. The room would start spinning for a minute or two, then stopped. Once that occurred, I could feel my body levitate off the bed. I couldn’t open my eyes because I didn’t have the energy, but there was no doubt I was hanging in mid air, floating as if I were on a cloud. I hovered that way for a few minutes before I felt myself being lowered and coming into contact with the mattress and pillows.

This “dream” happened every single Sunday morning of my infusion weekends for years, before becoming a once in a while thing. It felt so real because of the awareness I had when I was in the middle of it. I could feel the bedsheets draping over my body, cascading downward like a loose shroud. I heard the same household sounds that I would if I were awake. Everything I felt seemed like it was actually occurring. To this day I don’t know if this was a dream or a hallucination, but it was one of the most bizarre experiences of my life.

And this was after getting only 600mg of the stuff. Cancer patients get hell of a lot more, so I can’t even begin to fathom what that must feel like.

After being on the Cytoxan for a while, Saturdays became manageable while Sundays remained a waste of a day. But it still killed one weekend a month, which is primarily why I switched to Ocrevus. It reduced the number of times I’d be infused each year from twelve to two. I don’t get the weird dreams or crushing fatigue like I did with the Cytoxan, and I have a little more energy, but my body still gets hot, my head still feels like mush, and if I overdo it the room starts spinning and into bed I go. It also takes about a day or two longer before the side effects are completely gone.

The curious thing about switching to Ocrevus is the difference in how I feel after receiving the plasma transfers. Perhaps that is because I used to get the plasma transfers and the Cytoxan on the same day every month, and I what I felt was mostly because of the meds. Without those meds, I feel  physically wrung out and mentally fuzzy later that evening. By morning I may feel a little burnt-out, but that fades quickly.

These meds are designed to address physical issues, but there is a host of drugs for mental health issues that focus on brain chemistry. Knowing what my head and body feels like with some of the meds I have mentioned, my heart goes out to anyone who struggles with their mental health and needs psychotropic drugs to survive daily life. I can’t fathom what they must endure, and hope I never learn.

While I am certainly no expert, if you are faced with a chronic illness that requires pharmaceutical intervention, and the only experience you have with drugs are of the recreational variety, understand that the difference between what you know and what are about to receive, particularly if it is done intravenously, is like the difference between night and day. And if you don’t have that experience to fall back on, be prepared for a potentially wild ride.

Make sure you ask your physician what some of the side effects might be, and how you can expect to feel. I personally don’t recommend reading the literature that comes with the meds because it will scare the shit out of you. All it does is tell you all the bad things that could occur, including death.  Who needs that anxiety?  Besides, could and will are two different things, and your MD should be able to explain what the norms are. You need to get the low-down from them, and should find another provider if they won’t or can’t provide the information you need to feel comfortable.

It is better to learn that way than experiencing it without any prior knowledge, and wondering if something dangerous is going on in your body.

You can’t heal if you’re stressing out.

 

 

 

 

 

 

 

The Longest Day

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After three months of procrastinating, I finally I had my Ocrevus infusion today, and I am glad to have made the decision to go forward with it. Having said that, I forgot what a looonnnnnnnggggggg, dreary, boring, day this is.

The day starts with me leaving the house at 8. By 9 I’m in the unit and getting prepped for procedure number one, the plasma transfer. This usually takes about fifteen to twenty minutes, as the nurse has to get all the gear ready, scour each arm and hand to find a plump vein to plunder, insert the needles and get them secured, then start the centrifuge. I’ve been doing this for years, but I still get apprehensive when it is time for the needles. I don’t mind it if they stick me, then have to withdraw because the vein was playing hard to get, and try find another one. But what makes me cringe is when they have the needle in and haven’t found pay dirt, but think they are close. When that occurs they usually move the needle around while it is still in the arm. They are very careful, of course, but it is uncomfortable and I’ve been zinged a few times when they moved it a little too far or deep. When we are ready to rock and roll, the set-up it looks like this.

The procedure takes an hour and a half, but can go as long as two hours if there are complications with the blood flow. About a gallon of blood is filtered through the centrifuge, and the plasma is removed and replaced with six bottles of albumin, which is a blood product. The process is boring as hell because there is nothing to do but wait for it to be over.

My inclination is to fall asleep, but that isn’t possible because I have to periodically squeeze a rubber ball in the hand that is on the picture on the left. That is where the blood leaves the body to enter the centrifuge, and periodic pumping helps with the flow and makes the procedure go more quickly.

The thing is I can’t move the arm on the left because if that needle budges a millimeter the machine starts beeping and the nurse has to play with the needle until the beeping stops. And if I adjust my body too much the same thing can happen, so I have to be as still as possible. That means no book reading, perusing my I-Pad (impossible with one arm and limited movement) and morning television absolutely sucks.

I need to hydrate in the morning to help fatten the veins, but have to time it right so my bladder is empty by the time I am hooked up. Having to go pee with a needle in each arm and limited ability to use them makes that process very tedious and potentially messy. Fortunately, I got it right this morning. No urge to pee, and the nurse found a vein on the first try in each limb. This is not uncommon, but I didn’t feel so much as a pinch when they hit their target, which is rare. I can always tell how easy or difficult a time the nurse had by the amount of bruising that occurs the next couple of days. There will be none this time, but there have been others where the puncture wounds are surrounded an impressive display of red, blue and purple before turning brown, green and yellow until it disappears in about a week. 

When the transfer is done, the needle and tubing from the arm on the left is removed, the tubes are disconnected from the needle in the arm on the right, and I can finally get up to empty my bladder. Then the bag with the saline solution and Ocrevus is hung from an IV pole, tubes are run from the bag and into the port that protrudes from the needle, and the slow drip starts.

How slow? Between three and three and a half hours. But at least I can have lunch, nap, which I usually do (but not for the entire afternoon), and can read the paper and other sites I frequent on the I-Pad. All the while my blood pressure and other vitals are periodically taken. Still, there are periods of time within the afternoon where there is nothing to do but watch the clock tick.

By three thirty, the meds have been dispensed, all the needles are removed, and the gauze and ace bandages are affixed. But now comes the worst part: being placed on observation for an hour to make sure there are no immediate reactions. That hour is the longest of the day, and by then a unit that was bustling with patients and had every chair filled is practically empty, as you can see from the picture that leads this post.

My ability to leave got a little complicated today when my final temperature read 100.5 and a few folks became alarmed. But then the thermometer was placed under my armpit instead of under my tongue. That temperature was normal, and I was allowed to leave at around 4:45. I didn’t get home until 5:30.

I literally opened and closed the place, which is typical. If you start from the time I left home to the time I returned, it took nine and a half hours out of my day. Thankfully I only have to do this twice a year. I can’t imagine what it must be like for dialysis patients who have to go through something similar three or four times a week. I think I’d lose my mind.

I’m glad it’s over, and I don’t have to think about it again until late December. Now all I have to do is get through these next two days when the med’s side effects kick in. It’s later in the evening and I’m already starting to feel the warmth and fatigue.

I have a feeling the side effects are going to be worse than what I remember because it has been over nine months since my last infusion instead of the normal six. The doc on staff agreed with that assessment, explaining that the extra three months allowed more B cells to replenish. This means more will die off once the Ocrevus does its thing, which will lead to more pronounced symptoms like crushing fatigue and disorientation. My neurologist said I will be most vulnerable to the COVID virus over the next eight weeks. That’s a long time to be reclusive, and pretty much kills my summer.

The things we do to try to stay healthy. 

 

 

The Next Great American Novel

As most of you who follow this blog know, I have written a novel. It has received a number of looks and received many kind words, but like Superman’s relationship pursuit, nobody wants to tango. The agent keeps beating the bushes, but I am not holding my breath. It’s safer that way.

This blog has scratched my writing itch since then, but I have had this idea formulating in my head for a couple of months. It all started in the spring of 2019 when I wrote three short pieces that had a common thread, but no beginning or end. After finishing the third piece I thought “this could be the nucleus of something,” but nothing ever came of it.

Recently however, that once forgotten thought has been germinating. I have a rough theme and concept in mind and I can weave some of the stuff that is going on in today’s world into it. I am intrigued by what the finished project could look like, and believe the story would be engrossing and something everyone could relate to. The problem is that one issue has been a roadblock: the amount of work and time that is involved.

If it was just a matter of writing it, proofing it, then sending it on its way, I would do it in a heartbeat. That isn’t the way it works though.

After I finished the final draft of my novel, I wound up rewriting it so many times during the editing process that I lost count. All I remember is that it was at least dozen times, and perhaps more. Each time I re-read the manuscript was more tedious and annoying than the previous one. I felt like Sisyphus rolling that huge boulder up the hill, thinking this would be the time I got to the top, only to have it roll back down to the bottom for me to start all over again. In retrospect I can’t complain because the final product was superior to anything that preceded it, but have any of you ever read the same book over and over again in a year? I am pretty sure you would hate the story if you did. That is how it was for me.

It killed any desire I may have had to write another one, so my attention turned to this space, where I can pontificate on whatever I want and not take a lot of time doing it.

I can’t deny the itch was there however, and it’s getting more pronounced. The blog is getting a little stale and is beginning to feel like work. I enjoy telling stories, developing characters and plot lines, and am enthralled with the idea that for at least a few hours, someone would devote a sliver of their free time to enjoy the fruits of my imagination.

Plus I am bored! Bored, bored, bored, bored, bored! I work from home, don’t get out a lot, and have a lot of time on my hands. I had my Ocrevus infusion last week  and will have to spend the next eight weeks being extra careful while the immune system recuperates, and will have even more disposable time. I need to find something to occupy it.

All I need to do is take that first step, because once that occurs the rest will take care of itself. And like my agent said after I shared the thought with her, once you get one book published it is a lot easier to get subsequent stories done. So maybe story number two could be the best thing for story number one.

Writing the next great American novel is what I fantasize about. But the reality is this is nothing more than pure fantasy. Realistically, I probably have a better chance of hitting the lottery than that happening. Then again, there is zero chance of it happening if you don’t try.

All it would take is for me to open the laptop and write that first paragraph. You never know.

 

 

 

Resilience

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One of the most underappreciated aspects of human nature is our ability to adapt. While some folks have an easier time with this than others, the truth is we find our own way through challenges and roadblocks, eventually adjusting to them in a way that feels right for us. How would we otherwise cope with the world we live in now?

Seriously, does the life we once had seem real to you anymore? I certainly remember what that life used to be like, but it feels like such a long time ago that it happened in a different lifetime to another person. What I remember more than anything else is the process I went through to get to the place I am at right now.

I vividly remember the fear that existed when this was all new. I was a news junkie, watching the virus track from China to the Middle East and Italy before it invaded our shores. I never bought the supposition that this was all a fabrication of the media or a hoax. The apprehension about what would happen was the great unknown, and was in some ways worse than the reality of it being here.

When New York City became the new Wuhan, I followed the daily briefings and looked at the maps. It was if a bomb hit that region of the country and with each passing day the maps showed its blast radius expanding, inching its way into our state from the southwest to the northeast. Every day, I watched with dread as the number of confirmed infections and deaths grew, especially once the totals started accumulating in our town.

I started changing patterns of behavior by going to the grocery stores early in the mornings on Saturdays to avoid crowds. Shortly thereafter I started ordering them on-line and having them delivered. Nobody outside of immediate family was allowed inside the house,  and we stayed put in the oasis we call home.

Three months have since passed, and while the concern is still there, the shock and fear is not. The new reality is entrenched, the cards have been dispersed, and we’re playing the hand we’ve been dealt. I have the utmost respect, and in some cases awe, for the situation we are in, but I am no longer intimidated by it. I am not afraid of going out, and truly believe that as long as I adhere to the three pillars of wellness (wearing a mask, social distancing and hand washing), I’ll be okay.  I’m in charge of my destiny now rather than feeling like a puppet on a string, and I suspect most people feel the same way.

I have are no illusions about the future. We are running a marathon, and we have completed maybe a quarter of the race. This pandemic is going to have its ebbs and flows, and we are going to confront times that are worse than what we have already experienced, but the bloom is off the rose as far as the novelty of it is concerned.

We have all adapted in different ways. We may not agree with how others have adapted (or in some cases ignored), but we’ve all found our sweet spot. It’s the beauty of our nature: observe, adapt, survive, and hopefully thrive. This process will continue to evolve along those lines until this is over.

We’ll never return to the place we were before all this started, and it may take the better part of two years before a vaccine is found. We’ll all be more aware of how germs are passed and how we can protect ourselves. This will be ingrained in our psyches for the rest of our lives, and will come in handy down the road should something similar pop up during our lifetimes.

We should be wiser and better prepared individually and as a country should that day come, so the carnage and emotional angst isn’t as pronounced. We’re usually good about learning from our mistakes, so there is a lot learning we can apply going forward if we have the collective wisdom and will to do so.

It’s all about being resilient, and resiliency is one of the many distinguishing features that make up the mosaic of our species. Its power allows us to navigate the enormity of what has happened and come out the other side intact.  It helped me adjust to living with a chronic illness, which is a good thing because I can’t remember what it was like to have two strong legs, or not feel like I could fall at any moment. And it has certainly helped me get from a place of devastation and fear to peace and acceptance as far as the pandemic is concerned.

And when you think about it, what choice do we really have?

 

 

 

 

 

 

 

The Sports and Entertainment Wasteland

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I’m pathetic.

Since the ten part “Last Dance” series of Jordan’s 1998 Bulls concluded (and I have watched it twice!), there hasn’t been any live sports programming to sustain me. So I been reduced to watching reruns of old baseball games. Thus far I have watched the entire playoff runs for the 2004, 2007 and 2013 Red Sox, and a few games from the “greatest starts of Pedro Martinez” collection, which has been kind of cool. Other than that, it has been slim pickings finding programming that I enjoy watching.

At this time of year I’d orinarily be firmly invested in the start of the baseball season and would have attended a handful of games. I would also be neck deep into the NBA and Stanley Cup playoffs, and have a keen eye turned towards the opening of NFL training camps next month. Instead, I was left with stories of MLB practically destroying itself with their ugly and tone deaf “negotiations” to get the season started before that sordid drama finally ended. They now join the ranks of other leagues that are planning on either completing their unfinished seasons or getting the new one started.

Purists would argue that the integrity of the seasons are compromised because of changes that needed to be made. I could care less. It won’t  bother me one bit if I’m watching the event without fans in the stands because one might actually hear what the athletes are saying on the field/ice/court, which could be both interesting and entertaining. But perhaps it would be less entertaining than I’d like because there could be a five second delay in the transmission to bleep out the naughty words. What a pity!

So yes, it would be wonderful to have sports back to entertain me and provide an outlet to escape. The thing is I have a hard time believing that the plans that have been hatched will actually come to fruition. I don’t doubt that some if not all of the seasons will start or resume. I just can’t see any scenario where all of these sports leagues will complete their seasons as planned.

Let’s face it. Athletes are going test positive at some point, and some will get pretty sick. That is a given. The difficulty is in containing the spread so it doesn’t ravage the team or the league.

Basketball and hockey are contact sports with a lot of sprinting, sweating and heavy breathing, which are not conducive to stopping the spread. So even though they have the fewest remaining games, you can’t convince me their plans won’t become compromised.

The NFL? They have the most athletes and coaches in the locker room and on the field. They pound the shit out of each other, as sweat, snot, blood and God know what else flies around. They huddle in a group to hear the play call. That doesn’t sound very safe to me. Of all the sports, that is the one I question the most in terms of how everyone can be kept safe. Plus the season ends in the winter, when most people think the virus will rebound. I just don’t see how a sixteen game season is viable under those circumstances.

Baseball probably has the best shot of completing a season as they designed it because players are already social distancing when they are on the field. But a bunch of players and staff members have already tested positive before camps have even opened, which does not portend well for a sixty game schedule and playoffs that span a four month period. Plus they are assuming that everyone follows the honor system by stringently following the rules when they are off the field or on the road. Good luck with that! And really, does anyone truly believe that the players will suddenly be able to contain themselves and stop spitting?

I’m anxious to learn which athletes err on the side of caution and opt out of playing altogether because of safety reasons, particularly if a family member is in the high risk category. It would not surprise me to see some big names on that list. And if any of the athletes or their family members actually die from the virus, and you can’t dismiss that possibility, how can all the leagues not shut everything down and wait until next year?

Which leaves me once again trolling the Netflix/Amazon/Hulu/name your platform wasteland for entertainment. We’ve been at this for three months now. K and I have scoured the depths of these places to find something enjoyable to watch at night and have learned a few things. First, there are some hidden gems you never heard of buried in these places that are worth seeing. Second, there are plenty of really good documentaries to watch if you like that sort of thing. Lastly, you have to work hard to find these nuggets because there are sooooooooo many bad movies out there. They outpace the gems by at least a ten to one margin, and some of these movies are so bad that you shake your head and wonder how anyone was able to get the production financed.

So yes, you can find stuff if you look hard and long enough. Our problem is we are at the point where the amount of time it takes to plow through these platforms to find something worthy enough to even watch the trailer, assuming it exists, isn’t worth the effort.

I raise a glass and toast the MLB, NBA, and NHL for giving me something to look forward to (I’ll believe football will be played when I see it). I just don’t think anybody will be able to finish what they start, and perhaps something will occur that prevent any of this from getting off the ground.

So I will be left with the reality that the sports and entertainment menu is barren, that there won’t be any new programming any time soon, and that we will have to continue to troll the depths of the programming that exists to try to find something that is remotely interesting. Otherwise I will probably resort to the sports reruns again. After all, I have at least a dozen games recorded that I haven’t yet watched, but I’m not really enthusiastic about watching any of them.

Of course, I could use this time intelligently and start a second novel that has been percolating in my head for months. I really like the concept, I think it would be a really entertaining read, and I think the subject matter would make it very marketable. That would be the smart thing to do, but I know what went into the first one, and I’ve been feeling pretty lazy lately.

More on that in a future post.

 

Immunosuppressed In a COVID World

decisions

Being immunosuppressed in a COVID world definitely presents complications the average bear doesn’t have to navigate. MS is particularly tricky, because the reason I have the condition is my autoimmune system is on overdrive. In theory that means I should be more protected than most. After all, in order to treat the disease, the goal is to put the immune system to sleep so the body stops cannibalizing itself.

Once I started taking the intravenous meds over ten years ago, I assumed a suppressed immune system would mean I would catch everything known to mankind.  I would have bet everything I owned that I’d be sick with a cold , flu, or some godawful thing from Thanksgiving until Spring, but that never occurred. In fact, I can count the number of times I have been ill during this span on one hand, which I still think is odd, and I have no idea what this all means.

The reason this is becoming an issue is because while last month’s plasma transfer provided immediate relief from the weakness and the falling, the relief only lasted ten to fourteen days. Since then, I have been struggling with my balance and ability to move around. I literally have no strength in my ankle, my leg feels like it has no bone in it from just above the knee down, and the weakness gets worse with each passing week.

So while the plasma transfer helped, it appears my condition has regressed. The only thing I have done differently in terms of treatment (other than going two months without doing anything instead of the normal one)  is that I suspended receiving the Ocrevus infusion that was due in March. It has been over nine months since my last infusion, and the gap between treatments is supposed to be six.

So my dilemma is to whether to bite the bullet and get the damn thing. This is not the first time I have stopped taking something to my ultimate detriment, and while I cannot clinically prove the infusion has been helpful, my not getting it certainly fits a historical pattern. But I know from lab test results that this drug shuts down cells that fight infections, and that doesn’t sound like a smart thing to do.

What is most irritating about being in a high at-risk group is that you have to think about and analyze everything. This is cumbersome because nobody knows if the decision they are about to make is going to be the correct one. I go through a line of thought that asks if the decision I am about to make is balanced and thought out or impulsive. Is it selfish? It is overly conservative? Is it rational or based on fear? Is it what is best for me? Is it what is best for my family? The process can be draining.

For instance, do I avoid any kind of crowd, even if I wear a mask, if I get the infusion? Do I stay home and not visit anybody or have anybody visit me? Do I live like the boy in the bubble? Or do I throw caution to the wind and say fuck it! I was taking a lot more immunosuppressing meds than I am now and rarely got sick. Why should this be any different?

Well, the difference is the potential consequence, which could be tragic for myself and those around me. That is the rub. One bad decision and the dirt nap can become a real possibility.

While I don’t have any plans for the summer, I like to have options. A group of good friends from out of state have talked about getting together this summer, and while I’d really like to do that I’m not sure how smart that would be if I go ahead with this. I’d also like to go back to a restaurant at some point in time, and be able to visit with local friends. Part of me says why worry if the necessary precautions are taking. Then again, there is that nagging little voice that whispers, “what if?”

My gut tells me to get the infusion sooner than later. I would like some assurances, but I know there are no guarantees. I suspect that I will be reduced to a prisoner in my own house for a minimum of three months if I get the stuff, and I really don’t want that.

But what good is having options if you can’t walk more than ten feet without holding onto or grabbing something? What good is freedom if it means a complete loss of mobility and a quicker date with the wheelchair. Is the risk worth the reward? I’m thinking not, but we are heading into the best time of the year, which would make my confinement seem exponentially longer.

Do I risk being completely disabled or risk being completely dead? I obviously don’t like either choice, so the middle ground is to get the drugs then hide from the world. That is the sober reality of the situation.

I’m waiting to hear to see what my neurologist has to say about my quandary. Meanwhile, I’m trying to figure out how I’d cope with the restrictions I know the infusion would place upon me. One option that crossed my mind is to increase my MMJ intake and live in a comfortably numb state, except when I am working or sleeping, until a vaccine is developed and my sentence is over.

Now there is a thought!

 

 

 

 

Essential Services

AlchoholweedjpgGun

When our state came up with their plan to shut things down, it was interesting to see what businesses were deemed essential, and thus allowed to remain open. Some were no-brainers (grocery stores) and others were head-scratchers (golf courses).

It was also interesting so see how these services adapted. Most of the local grocery stores in my area opened early and reserved the 6:00 – 7:30am time slot for customers who were over sixty and/or immunocompromised. Shortly thereafter they placed directional arrows on the floors and the aisles in an attempt to direct traffic a certain way. Most hospitals I know of, including ours, pretty much cancelled all elective procedures, and treated only true emergencies and COVID patients. Telemedicine ruled the day as far as seeing a doctor was concerned, and no dentist offices were opened.

As the novelty of this wore off, it became clear to me what industries and services were more essential than others.  This discovery was not based on scientific analysis or anything like that, but instead was based on my observations of places I have been, and whether they were filled with or had lines of people waiting to get into the establishment.

Other than grocery stores, although the traffic in these buildings aren’t nearly what they were in the beginning due to the proliferation of business that buy and deliver your groceries, the three most essential services I’ve witnessed are gun stores, package stores and the medical marijuana dispensaries.

I don’t own a gun and have no desire to, however during my travels at the beginning of the shut down I was driving along a street in a busy commercial area and noticed a long line of people meandering from the front door into the parking lot. It was the first time I had seen anything like it, and I was naturally curious. Glancing at the name of the business I saw it was a place that sold guns and ammo, and immediately thought, “Uh oh”. I haven’t been by there or any other store of that nature since, but it made an impression.

The smaller package stores I’ve driven by always seem to have a handful of people waiting in line to get inside. The larger one I frequent doesn’t require people to wait in line, or have one person at a time enter the building, but masks are a requirement (they ask you to leave otherwise) and they have those same directional arrows on the floor that the grocers do.

The dispensary had by far the longest line of folks waiting to get in. The first time I experienced this, I figured it was the day of the week (Saturday) and the time of the day (10 in the morning). Since I’m not the most patient guy in the world, I decided the next time I went it would be early on a week day. Anyone purchasing items from the place is required to pre-order and specify a time and date of pick-up, which allows them to have everything prepared ahead of time and get folks in an out of the building ASAP. So the day I selected wound up being early on a Friday morning, about an hour after they opened, and it also happened to be a grey, dreary, drizzly day. So I naturally figured I would be in and out in a heartbeat.

Boy, was I wrong. There were fifteen people already waiting at the door when I arrived, and that line almost doubled in size shortly after I arrived. We were all standing six feet apart, on a dreary, damp and overall nasty day waiting to score our supplies. It took twenty minutes for me to actually enter the building, and five minutes to obtain and pay for the goods. There were no more than three customers in the building at any one time. I haven’t been there in six weeks but will need to make a trip soon. It will be interesting to see if the experience will be different or more of the same.

Guns, booze and weed. What a great combination! Not sure if this means anything, but I have to shake my head at the implications. If I was the cynical sort, I’d conclude that people need to self-medicate to escape reality/boredom, and they also are ready, willing and able to blow anyone away who threatens them.

It makes sense when you consider there are two distinct camps who view the pandemic in a totally different light, that the forces of hate and fear are becoming untethered, that we are more politically polarized than ever, and that stories about excessive police force with tragic consequences are sadly becoming commonplace.

Who could blame anyone who wants to get blasted to escape the madness? Hopefully these same folks have the good sense to keep the guns under lock and key and out of reach while they are escaping.

God help us if they don’t.

 

 

 

 

 

Back In The Treatment Saddle

saddle

With few exceptions, I have received plasma transfers and infusions of various drugs every month since 2008. From time to time, and especially within the last year,  I’ve wondered if I really benefited from these treatments, and pondered the possibility that I have been wasting my time. You’d think I would have learned by now because history has proven that when I have stopped or suspended certain therapies, the symptoms get worse.

I was due for my semi-annual Ocrevus infusion in March, but this was the time when COVID 19 was on the verge of introducing itself to our state, and I didn’t think it was a good idea to take immunosuppressant drugs. So I received the plasma transfer and steroid infusion that month, but deferred the Ocrevus until I spoke with my neurologist.

The gist of that conversation was my logic was sound, and that it might be best to defer any future treatments as long as my symptoms were stable, giving us time to learn more about the virus and what was about to happen in our state.

April rolled around. I was feeling fine, and I planned to skip everything for another two months, but then decided to keep a May appointment I had on the books for the plasma transfer and steroids infusion, just in case.  It’s a good thing I did.

Halfway into April, the bad leg started to feel weaker, and I began to question the treatment moratorium. Then the falls started.

I don’t fall very often, maybe once or twice a year, and almost always when I am careless and not paying attention to something. That has always been a good barometer for how I am doing. During a three week span from mid April into May, I fell four times, and it wasn’t due to carelessness. My leg felt like it was turning into jelly, and walking around the house was more difficult, especially in the evening, as I was grabbing onto and leaning against anything within reach to get from point A to point B. Needless to say, this abstinence wasn’t working, so last Thursday I bit the bullet and headed back to the hospital to resume treatments, desperately hoping that I didn’t wait too long and that what I was experiencing was my new normal.

I was also wondering how different the experience would be compared to the pre-COVID days.

The drive to the hospital wasn’t all that different in terms of the traffic. It wasn’t super busy, but it wasn’t like driving through a ghost town either. I’m not sure what I expected, but what I saw was fairly normal for that time of the day.

Then I arrived at the parking garage. The floor I park on has somewhere between 150 and 250 parking spots, and the handicapped spaces, which are limited, are always full regardless of how early or late I arrive. Not only were those spots readily available, but I counted a total of 10 cars parked on the entire floor (when I left it was down to 6). I knew from my work that volume was down significantly, but looking at numbers on a spreadsheet is one thing. Actually seeing what that means has more impact, and I was honestly shocked at how empty the garage was.

The first order of business when I walked into the building was to make sure I was wearing a mask (the hospital provides them to those who don’t) and confirmed that I had an appointment (no visitors are allowed). Normally I head directly to the elevator and go upstairs to the treatment area. Instead, my temperature was taken, and I was asked a bunch of questions regarding where I have been and who I had been in contact with before I could proceed. The experience walking from where I started to the treatment area was similar to that of that parking garage: there weren’t many people around.  

The treatment area was on a different floor, having moved one floor down. The top two floors were exclusively dedicated for COVID patients, and the floor below those was being used as an ICU for these patients. The floor my treatments were usually on was left open for potential overflow.

The new treatment location was much smaller and felt claustrophobic. I was the only patient there when I arrived, and although one other patient did arrive after me, we could not see one another. In the pre-COVID days, the main treatment area was packed.

I had to keep my mask on the entire time I was at the hospital, and everybody who worked or was being treated at the hospital wore them too. I also learned a new term. When I temporarily removed my mask to drink some water after having it on for an hour and a half, the influx of fresh air was cool and refreshing. I made a comment about it, and my nurse congratulated me for experiencing my first “airgasm.”

The roads were empty during the drive home, which was a little eerie. I had left during what would normally be considered rush-hour, but the cars on the highway and the state routes were few and far in between. There were less vehicles on the road than you’d experience if you ventured out early on a Saturday or Sunday morning. The ghost-town type experience I wondered about had certainly come to fruition. I didn’t see many cars. In fact, I didn’t see much life at all.

The actual treatment experience was the same, which I expected. Finding veins was a piece of cake, presumably because I had gone more than two months without a needle stick. Later on in the evening it felt like I had more steel in my leg, and a week has gone by without any change. So I am cautiously optimistic that I dodged a bullet on the progression front. 

After speaking with my neurologist on Monday and talking about how I was doing, we decided to continue getting monthly plasma transfers and steroid infusions, but the Ocrevus will be deferred indefinitely. It has been nine months since my last dose of the drug, and I had assumed that my B cell level would be back in the low average range by now. I was shocked to learn that was not the case. The low end of average, by whatever units they measure it, is 4. My level was 0.9, so I’m not even close to normal. 

This development has changed my point of view regarding a number of items. I’ve been careful about social distancing, wearing masks and gloves when I am out, and things of that nature. But I have also been stubborn about continuing to do normal things, like shopping for groceries. So we’ll be having most of our shopping done by the online services that provide them for the indefinite future.

Then there is the whole returning to work thing. I miss the office and the people I work with, and presumed I would be returning once the state and the health system started to relax its restrictions. Now that I know my body’s ability to fight off infections is significantly compromised, I can see myself working from home much longer than I ever anticipated or wanted. That will be a different discussion for a different day, but I can’t see placing myself among crowds of people, even with a mask, until a vaccine is developed. Why take that chance?

I’m not afraid, will not become a hermit, and will venture out when necessary, but the definition of necessary has certainly changed. I guess we’ll see how it goes.

As a post-script to this narrative, I must say that the commute to and from the hospital, my employer of the last twelve years, opened my eyes. It was a wonderful experience, one that afterwards felt like I had temporarily busted out of jail. I had forgotten what it was like to feel free.

The commute was liberating. It was great to feel normal again, and to revisit the world beyond my self-imposed three mile radius. We take these mundane experiences for granted until they aren’t mundane anymore, and I didn’t realize the impact of what that really felt like until I was able to spread my wings a little.

I yearn for the day that kind of life can resume.