The End Game

End Game

Throughout my MS journey, I’ve never dwelled on the ultimate outcome of my progression, what I refer to as the end game. I mean, what’s the point? The end game has been the proverbial crazy relative locked in the attic. You know they’re there, and you know at some point in time there could be a reckoning, but you don’t pay much attention to it because all it does is get you cranked up. Meanwhile, you do what is necessary to keep the progression at bay and prevent that day of reckoning from occurring.

The only concession I have made to my condition, besides diet, apheresis and infusions, is this house we just built, figuring it would be better to be proactive, and create a new space that can accommodate my needs should the worst occur on my terms. In other words move when I can, leaving the emotion out of it, instead of when I have to. That decision may prove fortuitous because my symptoms have definitely progressed to the point where the end game feels closer than ever.

The symptom that first appeared twelve years ago was a subtle foot drop. Slowly but surely, the weakness progressed beyond my foot, consumed my ankle, and slowly made its way up the leg to just below the knee. Walking became increasingly difficult and annoying, but it was manageable, and even though I used a cane liberally, I didn’t need it to get around. For the longest time, the weakness and lack of control hovered in that area, and even though it made maneuvering and doing stuff harder, I didn’t think twice about any physical limitations, and never thought of myself as disabled.

Well, things have changed. Perhaps it was all the work and activity I did to help get this house ready. Maybe it was the move itself. Maybe it was the stress of this entire process, which was significant. Maybe it was a combination everything or perhaps none of this mattered, and it was simply inevitable. Regardless, the symptoms have now consumed the knee, and my foundation is crumbling.

My knee feels like a broken kickstand that is on the verge of falling off. The pin that holds it to the frame is still there, and keeps the bike upright, but barely. It is loose as hell and is constantly on the verge of popping out. My knee literally feels like it is hanging by a thread, and as a result the leg feels like it can snap in half at any time. I wear a knee brace now in addition to the AFO brace, which helps, but all it does is provide a little extra support to prevent the leg from torqueing sideways.

If I don’t plant my foot a certain way every time I step forward, all my body weight lands on the bad leg as the other leg swings through, and the results aren’t good. The knee forcefully snaps back and the leg suddenly becomes inflexible and ramrod straight, which hurts, and my body wants to lurch forward. I literally have to place my hand behind the knee and push to unlock it and get the leg working again. This can happen several times a day if I’m not careful.

Needless to say my balance is worse than ever. I am in danger of falling with each step I take, which is a first for me.

So the nagging thoughts have begun. Is this the beginning of a steady, downward slide? Is my body going to allow me to continue working full time until I planned to retire? How much longer do I have before a walker or the dreaded wheelchair become necessary? What is all this going to do to from a financial perspective? I was supposed to see my neurologist again in January, but moved the appointment up to a week from Monday. I’ve never done that before, but I need to hear what he thinks.

Of course, I know there are no definitive answers. This could be my status quo for years, or I could be in a wheelchair by summer. I have always known what the deal is, but it never became a conscious thought until now. That crazy relative has broken loose from their prison and is rampaging through the house.

I’m resilient and stubborn though. We’ll wrestle for a while, and I have no doubt I will subdue them, stuff them back into the attic, replace the door and padlocks, and focus on more important things that I can control.

At least until the next obvious progression comes along.

 

Hell Week

Van

I forgot what a pain in the ass moving actually is.

The process started on Friday the 18th, when I took the day off from work to help with a few last-minute details. The following day a host of friends helped move all the boxes and some of the larger items we had in the garage of the old place into the garage and basement of the new place, which took about five hours. Then the moving van showed up at 9 on Monday the 21st, and by six or seven that night they were gone, and we were in.

The seven day period I took off was hell physically. Up at 6, work until it was dark, sometimes long after it was dark, then grab a few hours of relaxation before collapsing into bed and waking up early the next day to do it all over again. Going back to work felt like going on vacation.

The part I forgot about was not how tedious and cumbersome the packing and moving part is, it was how much the unpacking part sucks. About how spent you become just getting from point A to Point B, only to be faced with taking out and moving everything you packed into their new location in the new home, particularly when one is downsizing and there is more stuff than there is space.

Every day since the 21st, the laborious process of opening the boxes and placing the items in the areas we think we want them has been in full roar. We’ve cleaned out about half of the garage and could probably fit one car in there if we wanted, but the basement still remains a disaster. I lost count of the number of trips to the dump we have made with the SUV filled with broken down cardboard moving boxes.

Slowly but surely we are getting there, but it has been a physical and mental grind because for the last few months we have been either packing, unpacking, cleaning or moving. It has been relentless.

I have pushed myself harder than I can remember since MS raised its ugly head, and I am feeling it. Imagine carrying and moving boxes and other assorted things on one good leg for hours, day after day after day. Often it felt like I was walking on a balance beam, especially near the end of the day. At the risk of sounding over-dramatic, the term Dead Man Walking kept coming up in my mind because at times it felt like that.

My leg feels like it is hanging by a thread. My knee aches most of the time because it doesn’t bend the way it should, and walking is more cumbersome than ever. I persevere, but am hoping I didn’t overdo it, and that with a period of rest (whenever that might happen) I will be able to walk with a profound limp compared to whatever it looks like now. I can’t really describe what that is, but what I can tell you is it probably looks like one leg is a lot shorter than the other. My body noticeably dips lower and to the right with every step I take. I try to keep my knee bent because if I don’t, I hear a lot of grinding bone, and the leg feels like it will bend backwards before snapping in half at the knee. Instead it kind of buckles to one side. Swell.

I’d be lying if I didn’t admit I’m a bit concerned, but I made this bed. There really wasn’t a choice.

We are thrilled with the new place. It is wonderful to be on one floor, the shower is massive, with two shower heads, plenty of grab bars, and a place where I can easily sit. There are wood floors throughout so it is easy to slide my feet as long as I am wearing socks. It is clean, comfortable, could easily handle a wheelchair, and represents the culmination of a lot of sweat and gnashing teeth. K did herself proud with this one.

She still spends a lot of her days picking through the garage and culling stuff, and I lend a hand when I get home from work in whatever way I can, but that is when I notice how bad the leg is because I feel like I am on the verge of falling all the time if I’m not careful.

The stress of worrying about moving and all that goes with it is over, thankfully, but one little nagging issue remains unresolved and is becoming more worrisome with each passing day: we still have to sell the old place, and the holiday season is rapidly approaching.

Nonetheless we plod forward, and continue to place or dispose of the rest of the stuff that is in the garage and basement before the first snow flies. Slowly but surely, we’ll get there.

The inside isn’t ready for prime-time exposure, but here are some views from the outside. If it appears there are two stories when I said I love one-floor living, that is because in addition to the basement, the downstairs has a fully furnished apartment for Nidan and K’s Mom, who lives with us.

Once everything is in place I’ll share some pics of the inside, but have no idea when that will  be.

House1

House2

House3

House4

House5

House6

The Day is Finally Here

closed

You may not see another post from me until November, and the reason for that is moving day is FINALLY here. After a little more than a year from the day we broke ground, the house is move-in ready, and the fun starts on Saturday.

That is the day we will be unloading all the boxes that currently fill my garage (remember this picture?)  packing2and fill the garage in the new place. On Sunday we will begin to unload those boxes, and the movers come on Monday to move all the furniture and heavy stuff.  From there the slow and methodical process of getting completely unpacked and settled begins. Hopefully nothing important breaks during the process

It would be nice if we are done and everything is in place by the end of next week, but I doubt it. I am sure it will take longer than seven days to get everything done without any clutter. Then I’ll need to figure out to do with all of those boxes. We aren’t going to keep them all, but it makes sense to save a few for some future use.

Regardless, it will be an evolving process that will take some time, which means there will be little time for this. Don’t be surprised if the next post shows you a little of the new place and the tale of how all this unfolded.

Wish me luck!

My Mistress

Baseball on the Chalk Line of the Infield

Last Sunday I watched the last game of the 2019 season for my beloved Red Sox. It was a meaningless game, and represented the end of a colossally frustrating and  disappointing season. After last year’s historical romp, I knew repeating as champs was a tall order. No team had accomplished the feat since 2000, but the Sox were so overpowering last year, steamrolling all competition that lay in its path, I honestly thought that if any team could break that sting of futility, they could. After all, the team that started the year was virtually the same team that ended last season. Alas, it wasn’t mean to be, and reinforced something that I had learned a long time ago but foolishly assumed wouldn’t apply: one season has nothing to do with the next.

I had disgustedly reached the conclusion that they weren’t going to even make the playoffs back in late July. They had been playing out the string since then, but I still watched and attended their games anyway. Game 162 was no exception because E-Rod had the chance to win his 20th game, something no Red Sox lefty had done since back in the 1950’s, and they were playing Baltimore, one of the worst teams in baseball.

Like the rest of the season, he didn’t accomplish the goal as the team squandered a lead late in the game after he was no longer pitching, but they still won in satisfying fashion in their last at bat. As I turned off the television, I felt the sadness and void that typically occurs when a season ends with unfulfilled expectations. This year was worst than most because the reality didn’t even come close to what was anticipated, and I began to wonder why I take this game and this team to heart so much. It didn’t take long to figure it out.

While K is the love of my life, my soulmate, confidant and partner, baseball, and the Red Sox in particular, is my mistress.

This makes me a dinosaur, a card carrying relic of the last generation that remains passionate about the game. I’m a misfit in today’s world of short attention spans and instant gratification. This epiphany got me wondering what it is about the game that has me as hooked on it as an addict is to their drug of choice.

Perhaps it is because it harkens back to a simpler time. I started following and playing the game when I was 8. Back then nobody worried about their kids coming or going. In fact, it was better to be gone from the house because if you hung around too much our parents would find work for us to do. We’d ride our bikes anywhere and everywhere, sometimes for miles, to find a field to play on. We’d be gone most of the day during the summers, all afternoon during the spring and fall when school was in session, and nobody thought twice or worried about our safety.

Baseball was the king of sports back then, and when the Little League season wasn’t in session we’d play anywhere the was an open field. We’d pace the distance between the bases and from the pitchers mound to home plate, amend the ground rules based on how many players we had, and lose ourselves in the game and the camaraderie of being among one’s buddies.

My passion never wavered through high school, American Legion, and college, where I continued to play, or afterwards when my playing days were over. That was an accomplishment, because my mistress was a cruel bitch. Today’s generation of Red Sox fans are spoiled by their success during this century, because for the first four decades  of my baseball fanaticism, the Red Sox perfected the art of crushing one’s soul in the most heartbreaking and macabre fashion.

For years and years I had to suffer from the verbal abuse that Yankee fans liberally, gleefully and sadistically heaped upon us. They were indisputably the historical baseball kings, and often dominated the sport between 1976 and 2003, often at our expense. Any sane person would have said “fuck this,” and either found another team to root for or focus on the NFL and forget about baseball.

Ah, but she is an enticing minx, a voluptuous beauty who frequently allowed me to reach third base but never let me go all the way. The journey she took me on was wonderfully spellbinding  and pleasurable, but the ending was always the same: a 37 year case of blue balls.

But I kept coming back for more, thinking next year would be the year. My faith and patience was finally rewarded in 2004, and three more times since then. So I can at least cross that off the bucket list.

Baseball is my mistress because I love what most people hate about the sport. Each game is a drama that unfolds over nine innings. No game is the same, and each team has an equal opportunity to win because there isn’t a time clock. It’s a thinking man’s game, and a team sport based on individual accomplishment. The game is also incredibly hard because if you fail only 70% of the time, you’re considered an all-time great.

The regular season is also a mentally and physically grinding six month marathon that has a number of ups and downs. Each game possesses the possibility of seeing something you never saw before virtually every single day. To me, it represents the heartbeat of the best time of the year and has a history unlike any sport in existence, which makes it timeless.

I hate what is happening to the sport, with playoffs games ending around midnight, and the strategy I grew up with giving way to home runs, strikeouts, analytics and interminably long games. I want to scream at the batters to get their ass into the batters box without touching themselves and readjusting every piece of equipment they wear, and for pitcher to throw the damn ball instead of holding it for what seems like forever. But I still think it is the best game mankind has ever conceived.

The end of a season ushers in a bleak time of the year, especially here in New England. The weather turns cold, it’s dark and dreary most of the time, and everything outside shrivels and dies. When pitchers and catchers report to spring training in February, you rejoice in the hope and promise of the possibilities of a new season, and when the season actually starts, it ushers in the best time of the year. What is not to like about that?

I’m staring down the barrel of 174 days (but who’s counting) before the 2020 season starts. I’ll watch the playoffs, and actually enjoy them more because I’m not invested in any team, so who wins or loses isn’t important. Well, that’s not entirely true. I’ll be rooting for anyone who play against the Yankees. As long as they don’t capture the crown, and I don’t believe they will, I will be a very happy guy.

It is going to be a fascinating off season for the Sox, and will probably have more drama than the season that just ended. Tough decisions on who they can afford to keep and who to trade or let go, that will impact not only next season but their future competitiveness, are going to be made, and I will be fully invested in them. I’ll applaud some, hate and curse others, and read every morsel I can find behind the story behind them all. The decision makers will alternate between being inspired geniuses and utter buffoons, and I will be along for every step of this roller coaster ride. I may hate what the end result is, but I will still go to my ten games next year and faithfully follow them, living and dying with the results of each game. Hopefully the outcome will be better than it was this year.

For now, I hope the NFL will give me something to follow through January. There is also UConn basketball, but those are mere appetizers for the sport I truly love. My mistress wormed her way into the fiber of my being a long time ago.  I crave her caress, utterly helpless to resist her spell. Even though she is often fickle, abusive and selfish, I can’t wait to resume our torrid affair come March.

It hurts so good!

 

 

 

 

 

 

 

 

 

Moving Daze

packing 1

I have spent a lot of time in this space over the last year talking about the new house. In fact, when I wrote last week’s post , my intention was that it would be the final one on the subject until the moving trucks had come and gone. But there is another aspect to this ordeal I haven’t spent a lot of time venting about, and it is coming to a head.

If you remember, I mentioned last week how I hate feeling unsettled because I have flags planted in two different locations, but neither of them feel like home. The new place doesn’t feel like home for obvious reasons, we don’t live there yet. My current home of 19 years doesn’t feel like home because….well, all you have to do is look at the above picture to understand.

As you can see, there is shit all over the place. Moving boxes in various stages of completeness are strewn throughout the house. I have no idea how many boxes we (K and her Mom mostly) have actually packed, but I’m guessing it is getting close to one hundred. I  made a Staples trip last weekend to purchase more of them because we were running out, and when K told me we should get at least 30 I rolled my eyes thinking she was nuts. Well, we have maybe ten left less than a week later.

Clutter and disarray generally doesn’t bother me, which is probably a guy thing. K is fond of saying there could be a steaming pile of cow shit in the middle of our living room and I wouldn’t notice it. Not this time, however. First of all, it has been like this for a couple of weeks, so after that long even someone like me can’t not feel it. Secondly,  negotiating the suddenly limited floor space is like navigating a treacherous obstacle course for someone who has no balance, a drooping foot, and leg with no strength.

My role in this endeavor has been to carry the stuff out of the house and into the garage, but, as you can see from this pic, our garage is getting full.

packing2

The cars have been evicted from our garage for a month now, and there isn’t a lot of available space. Negotiating the garage is even more difficult than negotiating the house space, but at least we have a place for everything. Having said that, there isn’t much room left, and we’re at the point were I will soon have to start restacking the boxes to create more space. A number of boxes marked fragile exist, and we don’t store anything on top of those boxes to prevent anything from getting crushed or broken. So in order to create more space to accommodate the additional boxes I know are forthcoming, I’ll need to segregate the fragile stuff from the pack, and start stacking the other boxes higher. But not so high that they will become top-heavy and fall over. That would be a disaster!

Most of the painting is done, so our next step is to start the deep clean, which I love to do more than anything else (NOT!) That endeavor begins next week, primarily with the windows (there are a lot of them), and the floors, which need to be steam cleaned and waxed.

K is of the opinion that we need to get this house spic and span, and that the Home and Garden channel has made it harder to sell houses because buyers expect a lot more from prospective houses they want to buy, assume things should be a certain way, and have become very finicky and entitled. Guess we will find out if all this extra TLC will make a difference. I certainly hope it does. If we can get the price we want, they can be as finicky as they want.

We did this a lot in the late 1990’s (moving four times in five years), but we are far removed from that era. Although I thought I remembered what a tedious grind it was and is, this feels much harder. Perhaps that is because back then we were young, didn’t know any better, hadn’t accumulated nearly the amount of stuff we have now, and I didn’t have MS. As bad as the garage looks, it could be worse, as we have discarded or given away a bunch of stuff we no longer need and didn’t want to pack. That is one slice of wisdom learned from previous experience.

We are preparing to mobilize the troops to help us move the stuff in our garage in advance the movers coming in and taking all the big stuff. Compared to where we started, there is not a lot left to do, but there is still enough. Especially if we want to be out in three to four weeks. Then comes the task of removing everything we packed and placing them their new locations. While it will be wonderful to be in that position, this endeavor is almost as bad as getting the stuff packed. Plus we will have a ton of empty boxes to discard. On and on it goes. Will we be completely settled by Thanksgiving? Christmas?  I’d like to think the former, but who the hell knows?

Like I said last week, it can’t happen soon enough.

 

 

 

Wheezing Towards the Finish Line

Wheezing

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

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

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

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

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

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

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

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

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

But it can’t happen soon enough.

 

 

 

Let It Bleed

Bleed

I’ve been taking MS meds for over eleven years. There was an eight year period, which ended two Septembers ago, where I received a monthly infusion of Cytoxan, a chemo drug. Now I get Ocrevus infused twice a year instead.

I’m not the most observant guy in the world, but there are two things about my body that have changed, and I believe these meds are the root cause.

The first is I have lost all the hair on my legs. Now, I was never Sasquatch when it came to body hair, but I had a pretty decent pelt covering my legs for as long as I can remember. That is no longer the case. I’m sure it has been gone for some time, but I never notice these kinds of things. K made this observation a while ago, and I am sure it had been that way long before she mentioned it.

The odd thing is this hair loss as not occurred anywhere else: not my on my arms, chest, head or the nether regions. All remain the same, except for my head, but that’s more of the routine thinning that comes with age. So if the meds have anything to do with it, why there and not anywhere else? It’s odd, but quite frankly, I really don’t care. I am wondering however if anyone has experienced something similar.

The other change concerns the fact that my skin is about as fragile as rice paper. By that I mean I get bruises, cuts and scrapes which draw blood that never used to happen before. Most of the time I’m not even aware that it’s occurred.

Take last weekend for instance. I was abusing my body on a job where Nidan and I were making a patio outside the back entrance of the new house by laying a couple of hundred paving stones on a prepared surface. He lifted these stones from pallets and carried them to me, where I laid them in a grid that ultimately created a patio that was about twenty-three feet long and four feet wide.

I was on my hands and knees most of the time, but did have to get up on occasion, or lean onto or into something to keep my balance. The only time I knew I cut myself occurred when I got up from my knees near a window, and as I raised myself I felt the fleshy section of the back part of my shoulder blade dig into the corner of the window frame.

Back in the day, nothing would have come of it. At worst, it might have resulted in a small bruise or perhaps a small scratch that didn’t break skin. Instead, I lost a small chunk of skin and it drew enough blood where I could feel begin to trickle down my arm. So K exhumed a small alcohol pad  from the first aid kit, cleaned the wound (which felt wonderful), put a Band-Aid on it and we were good to go. It still looks nasty five days later.

When we returned home after eight hours at the site, Nidan noticed a gouge on the back of my leg near the heel that I didn’t know was there, and have no idea how it got there. I also noticed about a half-dozen zig-zag type scratches that had dried blood on them, in addition to a nickle-sized abrasion on one of my kneecaps, presumably from being on my knees all day long. I could see that happening if I was kneeling on solid stone, but I was kneeling on a cushioned pad instead. Somehow, the constant shifting peeled several layers of skin, and what I wound up with was an angry, seeping abrasion.

As I was finishing up that day I noticed that the nail on my big right toe was sore. When I was on my knees, a lot my weight was placed on tops of my feet, which were pressing into the patio surface most of the day. I inspected the toe and saw nothing unusual, and therefore didn’t give it much additional thought.

My foot often twitches during the course of the day, and when that occurs the big toe usually curls upward into the toe of my shoe. Most of the time I don’t pay attention to it, but yesterday my toe hurt every time it curled up. Upon removing my sock to inspect the cause, I saw that almost half of the area under the nail had filled with blood and was turning blue/black color. If anyone of you have ever banged your fingernail with a hammer or mistakenly kicked a hard, immovable object, you know what I’m talking Toenailabout.

These types of things have been occurring for several years, with more frequency each subsequent year.  Trivial mishaps that might have resulted in a bruise or small scratch that didn’t break the skin’s surface, always create a bruise or draws blood now, and sometimes a lot of it. Nothing that is stitch-worthy, mind you, but enough to use several tissues to stem the tide. Since my balance is so bad, I am frequently bumping into something, and if that something has a sharp corner or edge, I bleed.

My Dad lived until he was 96, and his 96 year old skin was a lot tougher and more durable than mine is now. The only explanation I can come up with is that the meds have done this. What else could it be?

Hopefully it won’t get any worse.