Category: MS

My Hair is Turning White

hair

I’ve done a number of different things since March to address the boredom and monotony of laying low while the virus raged, and one of those things concerned my appearance. When it became obvious that we were in this for the long haul, I vowed that I wouldn’t cut my hair or shave until the ordeal was over.

While I had visions of growing a beard that would have fit right in with those worn by Confederate Generals during the Civil War, I relented  after about two months because K couldn’t stand it, and even I had to admit that it looked gnarly and needed a trim. That’s what happens when one’s facial hair has the texture and feel of steel wool.

That wasn’t the case with my hair, but I ultimately had to get a trim in July because while I enjoyed the curls and the long locks, it not only had become unmanageable, but was growing faster and longer on the sides of my head compared to the top, which gave me a mad-scientist kind of look.

I got the hair trimmed a second time a few weeks ago, but am still trying to figure out a way where I can keep it long without having it look like a mullet. The beard, on the other hand, bit the dust shortly thereafter.

The truth is, I had never intended to make it permanent, and was getting annoyed with the constant trimming and nurturing it took to keep it looking reasonably good, so I made the impulsive decision to get rid of it.  Perhaps it was because K’s mom said I looked like Father Time, or maybe I rationalized by saying the election results served as a symbolic turning point in the virus saga. Regardless of the reason, I marched into the bathroom, retrieved my trusty trimmer, and hacked it off.

The experience was a little traumatic because I have not been completely clean shaven for at least ten years, and for most of my adult life I have had either a mustache or mustache and goatee. So when the deed was done and I didn’t recognize the face looking back at me in the mirror after studying it for a few minutes, I noticed four things.

The first was that the skin on my face was a soft and smooth as the proverbial baby’s bottom.  The second was my face felt like it was in a caught in a cold breeze. The blanket that had covered it for eight months was gone, and it took about three days before my skin adjusted to the external air temperatures.

The third thing and best thing was that I looked ten years younger. Facial hair has a tendency to make you look older (which is why I grew a mustache my junior year in high school to prevent from getting carded), and facial hair that is mostly white, no matter how good it looks, definitely ages you. So looking like a person who was closer to fifty than in his early sixties was a definite bonus.

But the one thing that caught me completely off guard was my hair. I knew I was greying before I started the beard, but sometime within the last eight months it didn’t simply get greyer, it had become very white. The change, quite frankly, was shocking.

I suppose I hadn’t noticed it because every time I brushed my teeth, or shaved the parts of my face where the beard wasn’t growing, I never paid attention to the hair, other than the fact that it was getting unruly. Instead, my eyes always seemed to lock onto the beard. That focus changed when the white from my face disappeared, because now there was only one place where I saw white.  That was on my head, and it wasn’t subtle.

I have no idea when the color changed from salt and pepper to mostly salt, but it doesn’t matter. Whether it be the stress of the past year, genetics or a combination of both, I’m turning into my mother in that regard. That is not a bad thing because while her hair turned completely white in her early sixties, like mine seems to be doing, it was a striking look and she wore it well. Plus she had a full head of luxurious white hair up until the day she passed at the age of 92. I should be so lucky.

It will be interesting to see how long it will take for the last spec of color to disappear from my scalp. I don’t remember when Mom’s stopped coloring her hair and went with the snowy owl look, but I know I do know it was that way when she was 64, because that is how old she was when I was married and the wedding pictures don’t lie.

The day will come in the near future where the color will completely disappear. But I could care less as long as I have something covering my scalp.  You see, I have a large head and very white skin, and combining that with no hair or beard will make my head look like an albino pumpkin. Should that day come, it’s a good bet the beard will make a comeback, and maybe then I won’t care how long it grows.

Note: You may not see any posts from me the rest of 2020. I need to get started on the second novel, and can’t seem to devote time to that and the blog. I’ve been putting it off for weeks now, and am truly unmotivated. But I like the concept in my head and think it will work, but have no idea whether the words will flow or if the experience will feel like I’m swimming in caramel. Time will tell. So assuming this will be my last entry for 2020, may you all have a wonderful, peaceful and healthy holiday season.

A Respite

It’s been a few weeks since my last post. Some of the reasons for this are because work has been busier than usual, and because I’ve been mulling over novel #2. My editor has been encouraging me to start, and I have been slowly putting an outline together, but the time spent on that takes away from this. At some point in time I will have decide to move forward or not bother, but that will be a different story for a different day.

The truth is that I haven’t felt like posting anything because I have been in such a down mood. The campaign and the mean-spiritedness behind it put me in a place that resulted in recent entries I thought were maudlin and depressing, and I didn’t feel like spreading anymore of that around.  And this is from someone who HATES politics and has traditionally avoided talking about it.

But now that the election is over, I’m glad to have a respite from the barrage of lies and negativity. I’m also glad that there will be a new occupant in the White House that will hopefully be able to change the narrative, bring civility to the political process and ultimately begin to heal the divisions that are so deeply imbedded.

Having said that, I am curious about how the 72 days between now and the inauguration unfold. 

I’m not surprised that Trump’s initial reaction is that of a spoiled child who threatens to hold his breath until he gets his way. It is distressing however to see the reality of how this election unfolded being replaced by his insistence that he won the election, only to have it stolen from him. It is shocking how many actually believe that, which makes me wonder if those same people would start believing in Santa Claus if their leader insisted he was real.

This kind of behavior and misinformation is indicative of the man, and while sad it isn’t a surprise. Unless there is proof of election malfeasance however, he should shut up and go away quietly, because that kind of fantasy makes only deepens the divisions, but what are the odds of that actually happening? One can’t help but believe he is more interested in seeding doubt so he can appear like a martyr to his faithful, then following tradition and doing the right thing by bowing out gracefully. It is this selfishness and self-centeredness that is one of the many reasons I am glad he lost.

I don’t care what anyone says, the anger in this country, fostered by the kill or be killed attitude where people with different points of view that are belittled and demonized, are the byproduct of his conduct and rhetoric. It’s one thing to disagree, but it is another to do so in such a way that spawns hate, division and resentment. That is not who we are. Hopefully most people will come around to see it that way.

One of the most ironic things about yesterday is that as I was watching some of the news broadcasts later that evening, and scenes were being shown of the spontaneous celebrations in our city streets, one of the commentators mentioned that these were the kinds of scenes you normally witness when a dictator is overthrown. I had never thought of it in those terms, but I have to admit it does feel that way. At least for me.

Still, there is a lot to be wary about.  Most news reports have indicated that the next 12 to 18 weeks are going among the worst we have experienced as far as the virus is concerned, and most of that time frame is on Trump’s watch. Who knows what the landscape will look like, or how many more will die, between now January 20th?

I think it is safe to say we will see more of the same given how the administration has handled the virus so far. I suspect that most of that time will be spent, other than chasing legal windmills, on settling political scores, whether it be firing Fauci, pardoning Manafort, Lynch, or any of the loyalists who were sent to jail, than trying to help the population navigate what can be a potentially lethal time.

For me, I’m going to try to focus on the positive and ignore whatever the Trump camp is (or isn’t) doing. Everybody is eventually going to have to lick their wounds, and try to come together and listen to one another so we can heal, grow and move on. And job one is the pandemic because nothing, including the economy, changes until we get more control over the spread. We need to break the cycle of tribalism that has come to define our politics, and the only way to do that is to stop treating opponents as enemies, but don’t expect any of that to start until after the inauguration.

These next seventy two days can unfold a number of different ways. The best case scenario is that the White House accepts the results without destroying faith in the process so that we can begin to heal. The worst case is that the Trump camp remains entrenched, burns our traditions of civility and an orderly transition of power to the ground, and some of his most enthusiastic supporters decide to take to the streets and incite violence in an attempt to take back what they believe is theirs.

The reality, as always, will probably be somewhere in between. I’m hoping for the best but understand that’s expecting too much. It’s going to be grim winter, but at least there is hope for a better day.

That hope is all the respite I need despite what may unfold. I don’t expect miracles, and it is naïve to think that the president-elect has a magic wand that he can wave to make this all go away. Our legislative leaders need to find ways to find common ground and act for the betterment of us all. Otherwise we will eventually find ourselves in the same place we have been the last four years. I’d like to think we are smarter than that.

Scary Times

scared-child

My rule of thumb has always been to avoid writing about politics, religion and sex because each are intensely personal. Save for one post I wrote a few months back, I’ve been true to that credo. In fact, when Superman wrote this post last week, I responded off line. But when a sitting governor is the subject of a kidnapping and potential murder plot, I can’t be a quiet bystander any longer.

ENOUGH!!!!!!!!

As you all know I have never been a Trump fan, but I have stayed out of the name calling, political hysteria, and all that crap. I felt and still feel that anyone who openly wished for his death when he caught the virus is just plain wrong. But his behavior since the COVID diagnosis has become even more erratic to the point of being downright frightening.

One of the first things someone told me as I entered the managerial phase of my work career was that the first rule of management is that everything is my fault. Both the good and bad. They explained that the leader sets the tone for his people, that any department head wears the successes and failures that follow, and that if I didn’t have a thick skin I’d better develop one quickly.

In our fearless leader’s mind, that doesn’t apply to him. Everything good is his doing. Anything bad wasn’t his fault, responsibility, or someone else is to blame. And his tribe follows his lead.

How else can you explain the visceral and often primitive reactions between those who believe in the science of COVID and those who think it’s all bullshit? How else can you explain the amount of hate that is so blatantly obvious in this country? How else do you explain why we lead the world in COVID related infections and deaths. How else can you explain that there is no outrage from the White House when a black person is gunned down by law enforcement, yet peaceful protesters are branded as subversive. And now we have the incident in Michigan.

What a fucking mess!

COVID would have been here regardless of who was in the White House, I know that. Not all Trump supporters are blatant racists, but I bet it is safe to say most racists do support him, and he continues to refuse to disavow their actions. And Trump didn’t recruit or organize any of the terrorists, lets call them what they are, to take out the Michigan governor. But I’m sorry. Anyone who insists that he has absolutely nothing to do with the state we now find ourselves in are as much of an enabler as his cronies in the Senate. He is the messenger egging them on. After all, he did say that Michigan (and other states whose governors dare criticize him) should be “liberated”. Well, I guess some of those “good people” were listening and decided to act.

If he wins the election, everything is all hunky-dory, but if he loses, the election was corrupt because of absentee ballots, the Democrats and any other wild shit he can concoct. He encourages people not to let the virus dominate their lives, and that it isn’t any worse than the common flu, without taking into consideration that he’s just plain wrong, that nobody on the planet received the treatment he received, that it demeans those who lost their struggle with COVID, and even if a bona fide treatment becomes available, not everyone will have access to it because he is so hell-bent getting rid of the Affordable Care Act.

Mitch McConnell meanwhile breaks all historical precedent by refusing to have the Senate hold a Supreme Court confirmation hearing more than eight months before the 2016 election, claiming the incoming President should have the right to choose, but wants to ramrod a nominee through less than a month before the election that involves the most unpopular Presdient in our history who lost the popular vote by over three million votes. The hypocrisy of it all makes me want to puke! Putin and our enemies must be laughing their asses off as they toast to their success.

My eighty-five year old mother in law has said on a number of occasions that Trump reminds her so much of Hitler. I’ve never bought into that comparison, and still don’t (mostly), but how can you not see the similarities in the creation of what became the Nazi party in Germany to what is occurring here now. We have a very unpopular President, who was always a loose cannon, who is now spouting off incomprehensible bullshit that I’m actually hoping is a case of rhoid rage from all the steroids he received instead of him losing his mind. Indict Obama? Indict Biden? Indict both of the Clintons, Pelosi and any other enemy he can think of? For what? Does this sound like a sane person? He’s doing everything he can to make it harder for people to vote, either in person or via absentee ballot and his enablers are helping him, like the governor of Texas who mandated there can only be one location per county where people can drop off their ballots. Do you know how big some of those counties are?

Any true leader would care for the welfare of all of his citizens, not just those who support him, and would do everything in their power to make it safer and easier to vote. His actions demonstrate the only thing he cares about is winning, and he does not give two shits how that happens. Does anyone honestly think that all the absentee ballots will be handled appropriately and accurately? I expect to read stories about how bags and bags of these ballots were thrown away or “lost” after Election Day. It’s the only way he wins the election in my opinion.

These next few months really scare me. He’s sewn doubt about the election and in so many words encouraged his people to flood the polling areas to make sure everything is above board. Even the Department of Homeland Security admits that domestic terrorism is the greatest threat we face, and he’s calling in the dogs to…..what? Intervene if they think they see something fishy. How do you think that will turn out?

He and Pence have all but admitted they will not accept the election results should he lose, and he has a lapdog of an Attorney General who asks how high when Trump says jump to help him steal the election. How can anyone not see this is a recipe for disaster? How can anyone not see the potential for carnage in the streets unlike anything we have yet seen? Accuse me of being overly dramatic, of hyperbole, of being full of shit, and of being a far left socialist (I’m not, by the way) if you want to,  but when a republican senator and ally says “democracy is not the objective of the US system,” how can you not think otherwise, regardless of how Senator Tillis tries to explain it away. The only chance we have of the administration accepting the results without much fuss is if he loses BIG. And even that may not be enough.

I’ve never been a political animal, and have proudly straddled the middle for as long as I can remember. I’m fiscally conservative (don’t get me going about the spiraling national debt that will soon overwhelm us), and socially liberal. But this election isn’t about politics for me. It truly isn’t. I’d say the same thing about anybody in that office who is as unhinged as Trump is now.

This is simply about a bad guy who only cares about himself that needs to be fired before this becomes a country we no longer recognize. We’re more than halfway there already. We can argue and worry about 2024 in 2024. The church of what is happening now is what’s important.

Whenever the dust finally settles on this cluster fuck, I sincerely hope we have a new President. We didn’t know what Trump was about in 2016, but have no illusions now.  Shame on us if he doesn’t lose big. We’ll have nobody to blame but ourselves.

And I’ll probably become an alcoholic, drug addict or both. How else can one numb themselves from the reality that is sure to follow?

Managing Boredom

Here is my typical week: Monday through Friday, wake up at 5:15, roll out of bed, make coffee and something to eat, then open the laptop and start working by 5:30. Take an hour lunch between 1 and 2, then work until 4 or so. Then it is time to head downstairs to work out before heading back upstairs to set the table and help get dinner ready. Once dinner is over, any remaining food is put into the fridge, the dishes are placed in the dishwasher, the counters and stoves are cleaned and the garbage taken out.  If there is nothing else to do, which is usually the case, I’ll take a shower then, depending on the time, fiddle with my I-Pad or watch TV until around 9 before brushing my teeth and heading to the bedroom. If there is something interesting on the tube I’ll watch a little while longer before nodding off, otherwise off to dreamland I go, only to wake up the next morning and repeat the same exact thing.

Saturday is pretty much the same, other than the fact I don’t get up as early. The mornings are spent grocery shopping followed by chores, and those are usually done by Noon. The rest of the day and all of Sunday is is spent trying to stay busy or helpful. I do most of my blogging on weekends, which helps, and so does the NFL, particularly if the Sunday games are any good.  Otherwise I’ll fiddle with my I-Pad or hang out with K, trying to find something decent to watch.

How bored have I become? I’m now getting eight hours of sleep at night during the week instead the typical of getting five or six. Dreaming is often more stimulating and entertaining than reality, so perhaps this is a situation where escaping reality is actually heathier because I am getting more rest.

We have been into our new entrenched reality for over six months, and it has become very old. I’ve become a hermit, venturing outside of my cocoon of safety only to get groceries, get my treatments, and drive somewhere for the occasional errand. Personal contact with anyone outside the immediate family is rare, replaced by Skyping or Zooming.  The new normal is a dull, sobering and boring existence. Managing boredom has become an ongoing challenge. 

Fortunately, I was raised during a time where there weren’t a gazillion channels on television, there were no computers or internet, and we had to find creative ways to occupy ourselves or risk being put to work by our parents. I  would therefore venture outside to find a friend to play with or find a discreet place to read to avoid suffering that fate.  This kind of training, if you will, has better prepared me for dealing with the isolation we now face than most kids and young adults, who I really empathize with.

I can only use relatives and colleagues as an example, but I am so glad that I don’t have school-aged children anymore. I would certainly welcome a little boredom in my life if that weren’t the case, but I’d wouldn’t trade my boredom for the insanity parents face today. I can’t imagine what it would be like trying to balance work, being a part-time home school teacher, and managing the emotions of children filled with energy and the need to unleash it in a world where options are limited at best.

Then there are young adults Nidan’s age (22). After he was furloughed from work, he used his love of the outdoors and exploring the woods to his advantage, and made daily treks that lasted hours to help break up the monotony. This solitary adventure keeps him safe, but still only occupies a sliver of the day.  He also made the smart move to continue his college education, so the classwork chews up some more time, but there is still a void that need to be filled. And like anyone his age, there is the desire to have a meaningful relationship, but how can anyone create that in today’s environment? He has the unfortunate burden of living with two immunocompromised people, which he takes seriously. He is trying to be patient, but he’s chafing at the bit, and who can blame him? It wouldn’t be so bad if the end was in site, but we are all fatigued and impatient about having to had to navigate a life where one breath can potentially kill you or those you love, with no end in sight. Maybe now that Trump and some of his inner circle have become infected, the light bulb goes off and we can actually move towards more of a coordinated, national response to the pandemic, but I am afraid that is wishful thinking.

There is a certain psychology necessary to address boredom. Besides needing to convince one’s self that this will eventually pass, we have to figure out ways to enjoy simple things that we perhaps took for granted, or start new hobbies. My physical limitations prevent me from being able to do a lot of things around the house and yard, so I have to search for more cerebral things besides playing card games and Scrabble on the I-Pad. My agent recently asked me about perhaps starting another novel. I actually have almost one hundred pages of written text on something I started a year or two ago in addition to a series of short stories I wrote that can be used as the nucleus of a new novel. I looked at both again after that conversation and got a little excited about resuming either because they both have promise. Continuing one or the other would certainly occupy my time, but the motivation to sustain the effort needed to do it isn’t there yet. Maybe that will change when it starts to freeze outside.

I’ve always been good at drawing and painting too, even though I haven’t done either in decades, so diving back into that could be an option. It’s a solitary endeavor that chews up time, and we all need things like that not only to make the days more tolerable, but to keep ourselves from going stir-crazy.  

Finding and embracing things like that helps prevent us all from scurrying around aimlessly, like a hamster on one of those metal wheels, their little legs pumping furiously while they go nowhere.  This is critical for me because even though a summer where more than 90% of my time was spent mostly isolated at home is over, there was the drama regarding the house sale that overwhelmed everything else and made it seem less onerous. We could also spend time together outside as a family unit, and occasionally have a close friend or relative over provided we kept our distance and wore masks.  But the colder weather is coming and that option will soon close.  

The onset of a colder climate will initiate a period of time that will be long and dreary, not to mention potentially dangerous. The holidays usually offer a respite, but how can this year’s season be anything but comparatively sterile and underwhelming? At least we are fortunate to be able to experience them in whatever fashion we do with all our friends and relatives around. Not everyone can say that.

By the time the weather turns warmer, there will hopefully have been a change in out national approach to the pandemic and we will have managed to control the spread better, not to mention more promising news on the vaccine front. But until then I’m braced for another six months that may feel like six years. Managing the boredom is going to determine how tolerable it is, not to mention maintaining one’s sanity.  It’s going to take some ingenuity to navigate, but what choice is there?

    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

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    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.

     

     

     

    A Final Walk In The Woods

    Woods 5

    Nidan isn’t the materialistic type. Don’t get me wrong, he enjoys nice things like everyone else, but he has never wanted or needed to have the latest toys or gadgets.  What he thrives on is nature and being outdoors. From the youngest age he’d spend hours on his swings, and it didn’t matter what time of day it was, what season it was, or if it was sunny, raining or snowing. He’d also create an obstacle course that covered the perimeter of the back yard and required him to navigate fences and a host of objects without his feet ever touching the ground. During summers, we’d often go to a large field near the high school during and hunt Carolina Grasshoppers. After catching as many as we could find, he’d take the large zippered net we loaded his stash into up to his bedroom and close the door. Taking one grasshopper, he’d toss it in the air, let it fly all over his room, pick it up when it landed, and repeat the process until the poor thing was too tuckered out to fly anymore. Then he’d put the bug back, take out another one and repeat the process.

    When he was older and received his drivers license, he discovered the joys of the woods by hiking on trails in the nearby forest with a friend. It was during this time that he discovered a love for rocks, quartz in particular. This love of the outdoors and nature has served him well during the Covid months because it allows him to do something he loves without having people around.

    Two years ago he persuaded me to join him on one of his explorations, eager to show me his stomping grounds. It was a wonderful experience, primarily because I spent a lot of time in the woods when I was a kid and it brought back memories of a simpler time. At the time I wasn’t sure I could handle the trek physically, but was happy to discover those fears were unfounded. I spent an entire fall afternoon following him around, watching him with fascination as he’d scour the terrain in front of him, exhume a rock of interest and take it to a nearby stream to clean it and determine if the item was worth keeping. It made such an impression I wrote about it in a walk in the woods.

    Nidan had been asking me me to join him on another adventure so he could show me the latest place he discovered. He had shown me pictures of a waterfall he had taken that was at the end of his route. Describing the area in detail, it sounded like a neat place and piqued my curiosity, but my main concern was the terrain. My physical process had certainly diminished in the two years since that first adventure, so I asked him about hills, and protruding roots, among other things. He he said there were a few, but no more than the last place he went to. “You can do this,” he insisted. Who am I to say no?

    So a few weeks ago we drove to a secluded spot on a town road on a hot and humid afternoon and parked off to the side, near a gate that led to a paved walk. At the top of that paved walk was another gate, and beyond that a gravel trail. Each side of the gravel trail had an abundance of wild bushes, and wild raspberry bushes were predominant among them. Nidan took great pleasure in picking the fruit and sharing the tasty treats. berries

    After walking the trail for about ten minutes he veered off to the left into a mass of greenery that had no discernable path. When I asked where he was going, he said the path started once we got through that tangled mess. So using my cane and free arm, I carefully picked my way through the morass of vegetation and came to an opening that led into the woods and saw a clear trail head of us. My initial thought was this wasn’t going to be too difficult because the path was clearer and wider than the one we explored two years prior. Then, after about ten minutes, we got to this hill.

    Woods 1

    This picture doesn’t do the length and steepness of the route justice, but this one, which I took on the return trip, does.

    Hill

    “You’re joking, right?” I said to Nidan, “I thought there weren’t any bad hills. What do you call this thing?”

    “Do you need me to help you?” he asked. I thought about it and decided it would be better if I flew solo, and after shaking my head no he nimbly made his way down the steep and narrow clearing to the gravel path next to a meandering brook that lay below, seemingly unconcerned about my fate. “Don’t get too far ahead of me just in case,” I said. He didn’t listen.

    With my balance, going downhill is harder than going uphill, primarily because the inertia of gravity feels like an invisible force is trying to suck me downwards. Taking a deep breath, I took that first careful step and gingerly made my way down that hill, using my cane for stability, all the while thinking that K was going to kill me if I fell and broke something.

    Once I reached the bottom, my welcoming committee simply said “See?” before walking along the brook and heading down another trail that was mostly flat, but was studded with fallen trees and protruding roots. Path

    Nidan made several stops along the way and veered off the path wherever he found a tree that fell because that supposedly unearthed the crystals he like so much to discover. I wanted to keep going, and asked him where the waterfall was. He pointed straight ahead and said I would run into it towards the end of that path, but couldn’t tell me how long it would take before I got there. I explained would keep going until I found the waterfall then return. He assured me he’d either meet up with me or be off to the side of the trail somewhere if he saw something that interested him.

    It took another twenty minutes of walking before I found what I was looking for, the waterfall that opened this post. I couldn’t get super close to it because the trek to it was littered with obstacles that I didn’t feel like negotiating. My leg was cooked and I could hardly lift it, which would have been necessary had I wanted to get closer. I was content with the view and listened to the sounds of the cascading water.

    It was an idyllic scene. I was under a shaded canopy on a miserably hot day, sitting on a fallen tree, taking in the sounds of and beauty nature. I marveled at how Nidan had a knack for finding these kinds of places, and his fearlessness in venturing alone into the deep woods like this. I could see paw prints of various animals in the dried mud on some parts of the trail, not knowing what they belonged to, and not wanting to find out. He had told me once before that he had heard the screams of Fisher Cats on a couple of occasions, which had scared him. I also knew that sightings of bears and bobcats had been on the rise in our area, and I couldn’t help but think Nidan had some serious stones to venture out to places like this by himself. Of course, when I was 22 years old I never worried about things like that either.

    Nidan was where he said he’d be when I returned, rummaging around the root ball of some large tree that had fallen. He had a couple of crystals in his hand that he brought to a nearby brook to wash off, but discarded them once they were deemed unacceptable. Fortunately, I wasn’t around the following day in that same area because he made this discovery, which he took great joy in showing his Mom via pictures and videos because he knows it freaks her out. He told her he found a rattler, which are common around here, but I know this isn’t one of them. Boys….!

    snake

    He veered in the direction of another root ball to resume his search but by then I was ready to go. I said I would start heading back because it would take me a lot longer to get to the car than it would him, and that he needed to start heading back soon, knowing that for him this could mean five minutes or a half hour. It didn’t matter in the end because he caught up with me before I was half way back to the car.

    When we buckled into our seats, my leg felt like rubber, and I knew I had stretched my abilities to the max on this adventure. Sadly, I also understood that this was probably the last time I’d be able to do something like this with him.

    As hard as it was making that trek, and in hindsight that trail on average wasn’t much different or difficult than the one we were on two years ago, I was glad I made the effort. As he has aged and my condition has regressed, we haven’t done as many things together as we once did. That’s only natural, but it made me a sad nonetheless. Those experiences and memories are priceless.  My darling little boy had grown into a fine young adult, closing one chapter of our lives and  opening another. I am going to miss those times. I already do.

    Here are a few more pics from our adventure.

    Ethan

    Woods 3

    Woods 6

     

    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

    EVV

    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

    Pills macro
    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.

     

     

     

     

     

     

     

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