Month: September 2020

Hiccups – A Rant

hiccups

Hiccups are one of the rarer and lesser-known side effects caused by steroids. I found that out the hard way many years ago after my first three day course of treatment at home. One liquid gram of the stuff infused on three consecutive days did remarkable things for my symptoms (I wasn’t nearly as bad then as I am now), but twenty four hours later these bastards arrived and literally did not stop for seventy two hours. Each day was worse than the previous one, and they lasted all day long. I had to try to sleep with a stack of pillows to keep my head and body upright, but they did little to help, and I doubt I got much more than four hours of combined sleep at night during that time.

I tried everything to get rid of them, but to no avail. The worst thing I tried involved food. After dinner on the first night, they seemed to subside, so I naturally attributed that to putting food in my stomach. As a result when they returned I stuffed my face with comfort food. Of course, it turned out that eating food didn’t impact them at all, so all I achieved was making myself feel like I swallowed a basketball while my body convulsed with one hiccup after another. You can imagine how that felt. We aren’t talking one or two of them either. They were repeated and countless, delivered in machine-gun like fashion, lasting for an hour or so before I’d get a brief respite before starting again.

I’ve never had to endure that torture on such a large scale since then. I get steroids infused every time I have my plasma transfers and other infusions, but those only happen over a single day. As a result, when they reappear the following day, it’s annoying, but one day is a comparative piece of cake, so I don’t mind.  Besides, if they get really bad a healthy dose of THC laden MMJ temporarily puts them to sleep.

I received my last plasma transfer a couple of weeks ago, but because of a glitch in the ordering system the steroids were not infused. I did not get the same benefit from the treatment as I typically do, so I asked my neurologist if it would be worth considering taking them orally for a few days. Yesterday, I received a script of 20 pills, with orders to take 4 a day over a 5 day period. I started taking them as soon as they were received, and just finished swallowing down my fourth pill in twenty four hours. I have to admit I think they are doing a world of good, which put me in a really good mood, but something has just developed that I perhaps naively never anticipated or expected: the hiccups have started again.

I’ve reached out to my neurologist to see if tapering down to three or two pills a day would provide the same kind of effectiveness, but I doubt they will. So the quandary I find myself in is choosing between decreased mobility, strength and balance, or five days of hell.

I swore I would never put myself through this again, but the mobility and balance issues are as bad as they have ever been, particularly at night. I would like to keep them at bay so that those symptoms begin to emerge just before my next treatment, but the memories of that first experience are so vivid.

Remember, we aren’t talking an occasional burst of a few hiccups. They occur every five seconds or so. The first bout lasted close to an hour, left, then reappeared within the next hour. They aren’t bad now in the sense they are relatively mild, but as the day progresses they will become more frequent and violent in nature. They will escalate to where these five second intervals involve two or three and sometime more spasms, one right after the other.  Trying to take a breath in the midst of these things is difficult, which can be unnerving. They are as exhausting as they are infuriating, and the prospects of dealing with them for several days doesn’t thrill me. And it isn’t as if I can just stay stoned all day and night. There is a thing called work.

Knowing me I’ll put up with it, but the shit we have to do to keep ourselves afloat with this miserable condition. And I’m one of the fortunate ones.

September Blues

Summer has come and passed. The innocent can never last. Wake me up when September ends.       Billie Joe Armstrong

I’m generally a pretty even-keeled guy. I don’t get too giddy when something great happens, and won’t wallow when things don’t. After what we went through waiting almost ten months to sell our house, and enduring some family drama I haven’t written about, you’d think I would be in a good place. Instead I’ve been in a rut, and I suspect it is going to take much longer than September to dig out. I have given some thought how this has happened, and what I have come up with is ranked from least to most relevant.

Mental fatigue: After enduring the strain I mentioned in the opening paragraph, I’m tapped out, with no appetite for anything that isn’t kumbya. And we all know that isn’t the reality in this country (more on that in a bit).

Sports: Yeah, I know. This is trivial and superficial, but sports is an escape from reality, and we can all use a diversion. Unfortunately, my beloved Red Sox are only adding more angst to the equation because they suck. Not only do they suck, but they aren’t even remotely watchable. They have gone from being historically good to historically bad in a span of two years, which is mind- boggling. I therefore latched onto the Bruins (hockey) and Celtics (basketball) to fill that void, but the Bruins spit the bit, and the Celtics lost a golden opportunity to put their current opponent away. They are now in a dogfight for their playoff lives, have lost all the momentum they had, and it appears they are headed for a disheartening crash. Swell. Maybe the Packers can give me something latch onto when the season starts next week.

Word Press: They changed the format so everything is foreign and different when it comes to this platform. When I preview this on a different medium (laptop, I-pad, phone) it looks different, so it has taken me twice as long to compose, and I have no idea how fucked up it will look when it’s published. It’s an aggravation I don’t need, and it is really pissing me off!

The Endless Virus: We are into our sixth month of this pandemic and there is no end in sight. Summer was supposed to provide a respite from its spread and we know how that turned out. The cold weather months are looming, flu season is coming, and anyone who thinks this isn’t going to take a turn for the worse is delusional. I am tired of the isolation. I am tired of the struggle. I am tired of thinking about everything I do in the context of staying healthy. I am tired about having all this time on my hands which provides ample opportunity to dwell on how fucked up our current situation is. We have at least another six months of this and probably more, and I am just plain tired of it all. The only light I see at the end of this tunnel is not a ray of hope but that of an oncoming speeding locomotive that will flatten anything that gets in its way.

The campaign: We are only 58 days away from Election Day, and those 58 days are going to feel like an eternity. It’s already ugly and it will get uglier and uglier the closer we get to that fateful day. As you know, I have never been a Trump fan. I distinctly remember waking up the day after the election in 2016 absolutely terrified about the next four years, but hopeful that I was wrong about the guy. I wasn’t. Then I made the mistake of reading Mary Trump’s book which not not only validated everything I suspected about the guy, but put me in even more of a panic about our future if he gets re-elected, which I thought wasn’t possible.

It also has me questioning the sanity of our electorate because I don’t understand how anyone can make excuses for this guy anymore. He has botched the handling of the virus. He takes no responsibility for anything, lies constantly, is lazy, uninformed, blames everyone else for his failings, and only cares about himself. The law and rules of government have no meaning for him if they get in the way of a desired outcome. I am a firm believer that the President sets the tone for the people in this country, and what we have right now is a society that is racially divided, politically polarized, intolerant, and mean-spirited. We demonize anyone who doesn’t share a similar point of view, and have become a joke in world’s eyes. You may argue that Trump didn’t create the situation, which I can acknowledge. But he has made it infinitely worse.

It is disheartening to ponder how this narcissistic, egomaniacal, sociopath has continued to get away with what he has. I hope and pray that he loses by a large margin because I doubt he will leave voluntarily if he doesn’t. He’ll insist the election was rigged, was fraudulent, or anything but fair. This from a guy who has encouraged his supporters to vote twice, and done everything in his power to plant that seed of doubt. One can only wonder if the violence in this country will escalate if he refuses to leave. Maybe the futuristic piece I wrote a few months back isn’t that far from reality.

My bottom line is this: I have disliked a number of our Presidents in my adult lifetime, both Republican and Democrat, but I have never questioned their loyalty to the country, it’s people, and our democracy until now. I honestly fear for every one of those things if we are stuck with King Donald for another 4 years.

The Disease: In the twelve years I have had to endure MS, I have never thought of myself as disabled or anything less than whole. I’ve pushed the physical envelope at every opportunity and never though twice about it. I haven’t asked for or expected any accommodations, have never thrown in the towel about performing any required task, and have lived in a state of ignorant bliss in regards to what the future holds. Unfortunately I’ve reached a point where reality has punctured that comfortable cocoon of denial.

Everything has become hard. Walking is hard. Standing is hard. Taking showers is hard. Getting into and out of bed is hard. Turning in bed is very hard. Getting into and out of my vehicle is hard. Getting dressed is hard. Stairs are really hard, and so is putting socks on my feet. The risk of falling used to be remote. Now it is ever-present.

A few days ago, I gave into this reality because I almost dropped a huge stone I was trying to lift out of the back of our SUV onto my foot when I temporarily lost my balance pivoting around so I could place the stone on a nearby hand-truck. The fact that didn’t happen and I didn’t mess my back up in the process is a minor miracle. For the first time ever, I had to wave the white flag and beg off taking the one remaining item out of the vehicle. K had to call a friend to finish the job because what was left was too heavy for Nidan to do himself, which was humiliating from a male ego perspective.

The truth is my leg is toast. My legs have always been the strongest part of my body and have provided a firm foundation that allowed me to do anything I chose, albeit much more deliberately. As much as I hate to admit it, that foundation has crumbled, and this reality is as sobering as it is depressing.

I can’t do anything about the MS other than come to terms with the reality I always knew was there. Knowing me, that will happen sooner than later. As far as all the other stuff is concerned, it is completely out of my control. All I can do is pray that the arrival of 2021 will provide ample reasons to be more optimistic and hopeful about the future than I am now.

If not, being placed in a medically induced coma doesn’t sound like a bad option.

Working From Home

View

It’s hard to believe that I have been, with the exception of two days when I had no internet compliments of Tropical Storm Isasis, working exclusively from home for almost six months. I was never an advocate of working from home full time, primarily because I thought it would be boring as hell, but I have to admit that I’ve changed my tune. It hasn’t been all peaches and cream, but there are definitely more pros than cons with this arrangement.

PROS

No Commute:  I live more than thirty five miles from the office, and my one-way commute lasts between thirty five and forty-five minutes depending on the time of day I leave or return. If there is an accident along the way, add another thirty minutes to an hour to the drive depending on the severity of the wreck. Now all I have to do is get up, roll out of bed, brush my teeth, get dressed, grab a cup of coffee and fire up the laptop. All of that takes a whopping fifteen minutes.

More Sleep: In order to accommodate my early bird tendencies and desire to miss the morning and afternoon rush hours, I’d wake up at an insanely early hour. Now that this is no longer an issue, I get an hour’s extra sleep. That makes a big difference, although K still insists I’m still not getting enough rest.

More Productive: Not having to listen to the office politics and drama has both its good and bad points. The good part of it is there are less distractions, and I can work with less interruptions. It also reduces the annoyance factor because the office at times feels like a glorified Kindergarten class for adults, and I have no patience for that kind of shit.

Weight: The most shocking thing about this experience has been that I’ve actually lost close to fifteen pounds. Part of the reason for this loss must from the stress related to the anxiety related to selling out house, but a lot of it also has to do with less access to food. There are always a number of candy jars laying around the office that I would avail myself to at various times of the day, and there was often an event going on that involved food of some kind. There is none of that here, so my day time snacking has disappeared.

The View: As you can see from the photo that leads this post, I have an nice view outside the window next to the table I work from. It’s very soothing and Zen-like. All I have to do if I get stressed is take a deep breath, stare out the window and let my mind wander for a few minutes.  Back at the office, I didn’t have any view at all, and what was available whenever I’d venture away from my desk was a parking lot. No comparison there.

Every Day is Dress Down Day: My typical work attire was a suit and tie, which I never minded because that has been the routine for over thirty years. I have traded in the suit and tie for shorts and a t-shirt of some kind. On most days I don’t even wear socks. Even with the beard I would have to shave every day to get rid of the stubble on my neck and parts of my face if I were reporting to the office. Now I shave whenever I think of it, which isn’t very often.

It’s Cost Effective: My monthly gas and dry cleaning expenses averaged close to $300 pre-Covid. I haven’t spent a dime on dry cleaning since I’ve been home and at most I will fill my car’s gas tank twice a month. These two items alone have saved me over $230 a month. That adds up over time.

More Flexibility at Home:  If I need to run a quick errand I can. If I need to take a minute to help K with something I can. More can get accomplished that way which means there are less items to catch up on during the weekends.

THE CONS

It’s Isolating: Our worlds have shrunk and this arrangement shrinks them more.  I’ve never been a social butterfly, but I do miss being around the people I work with.

Not Being In the Loop: While not having to deal with the office politics and drama is a welcome respite, the other side of that coin is that you can learn a lot about what is going on in the organization and with some people in particular just by being around and paying attention. That is no longer possible, and while virtual staff meetings can fill some of that gap, it isn’t the same as being a fly on the wall and listening when other folks aren’t aware you’re around.

Longer Hours: Even though I sleep more, the time that would be spent commuting is now spent working. There’s nothing wrong with that as there is plenty of work to fill the time, but is interesting how I have added five work hours on average to my week since I’ve been home.

A “Longer” Day: There is no way around this one. The day seems to pass by more quickly when I am in the office compared to when I am home. It doesn’t drag, but it doesn’t fly by either.

Family Politics: If something happened at home I’d be insulated from it at the office. That is obviously no longer the case, and even though you try not to pay attention to anything that comes up during the course of a day, it’s hard to ignore. And sometimes it is hard to put it out of your mind.

 

I suspect this arrangement will be the norm for at least another six months, as I don’t envision a vaccine, or at least one that works compared to one that is politically expedient,  being available any sooner than that. As an immunocompromised person, there are no expectations to consider returning to the office until that day comes.

Be that as it may, I suspect that certain organizations and industries will have learned they can be as productive with people working from home. Not only that, not having to rent or lease office space will improve their bottom lines, so these alternative work arrangements are here to stay in my opinion.

Regardless, I’m converted. I don’t ever see myself returning to the office full time whenever it is safe to venture outside without restrictions. Twice a week is more than enough.

 

 

 

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