Coronavirus and Multiple Sclerosis

Yesterday, I had an appointment with my neurologist and we talked about my school re-opening and the concerns this poses.

Normally, I keep my profession out of my writings; however, I am a high school teacher that switched careers after being a news reporter so maybe it is my current profession, maybe it is my previous one, maybe it is simply my personality, and maybe it is my health, but my patience on these health and safety matters — and where public education fits amongst these — is wearing thin and so I found myself thinking back to the beginning when this virus started and when my school was still open . . . .

“I hope there’s no one with a compromised immune system because we are still here!”  This is what one of my high school students jokingly shouted in my classroom as thoughts on COVID-19 spread in everyone’s mind.  The virus had spread literally, too, traveling from country to country until school divisions closed their doors to the 2019-2020 school year.  Yet, at some schools — my school — teachers and students were still here.

Little did we know at that time, but Virginia’s governor would intervene to force schools (that chose to stay opened) to close, and so on this March afternoon a sudden faculty meeting was called after-school to announce the news.  With those words, a goodbye was said and — despite preparation that should have been done in advance — teachers and students were thrust into a virtual world of working from home.  There were hang-ups on both ends, there were frustrations on both ends, there was finger-pointing on both ends, but the bottom line was passing students and this is essentially what was done everywhere.

At the same time, months have passed and the approaching 2020-2021 school year is now on our doorstep.  Many area schools have voted to be virtual but mine has opted for the doors to (once again) open.  Here is a brief answer as to why: I’m told it is primarily a funding issue.  Public schools everywhere are now competing with the decision for private schooling, homeschooling, and more, which equates to children leaving public schools.  The more children who leave, the less funds public schools receive, and that translates into cuts — cuts when already there is nothing left to cut.

I’m told there is also much pushback from parents and guardians to go virtual, at least where I work.  Understand, in today’s society, parents and guardians are gods.  They set the rules.  They dictate how the rules will be enforced, and — in some magical, unbeknownst way — they are simply listened to, which is why I want to talk about the “they” for a minute — the “they” who speak, the “they” who set rules, the “they” who are leading.  The parents.

I’ve been told directly — and I quote — “Teachers are expendable babysitters” and “Teachers are all whiners” (both courtesy Jack Graham from Keokuk, Iowa on Facebook who I feel should have the privilege of hearing your thoughts on this matter).  I’ve seen supposed-friends post confusion as to why teachers are ‘complaining’ at going back to school when shop (translation for Americans: grocery) store employees have had to work since the start of COVID — which insinuates that schools are 100% similar to grocery stores and teachers, 100% similar to grocery store employees.

These are just two super quick examples.

Can we blame these people though?  Truthfully.  These are people in America and in other countries.  These are people that are raising children.  These are people that no doubt will see their children raise children.  These are people we gave power.  These are people that have — and will continue to have power, so these are people pushing this slow and vicious cycle on in a way that there is and will continue to be a decline in the education system.

So yeah, things have been tense.  And I’ve been a bit terse because of it.

Because these people aren’t necessarily wrong.

This is how teachers are treated and this is how teachers are expected to be treated.

And that is where the massive tragedy lies.

Therefore, while this post is a health update, I somehow find my remarks not off tangent and yet interwoven with my topic because at the start of this quarantine, I found myself striving for a peaceful mentality.  In fact, I remember even writing this:

In more ways than I can list, I am incredibly grateful for this quarantine…
I can feel and see nature take back and forgive and rebuild, and that alone is beautiful.
I am positive a higher power — not one in religion, but one that is natural in life and nature — is telling everyone to slow down.
I, therefore, have been given the ability to breathe without society dictating the inflation and deflation of my lungs.
Instead of one blink equating one day, I have been filled with sleep and awaken feeling alive.
I have had time to think, to read, to write, to create.
I am becoming a better person — stronger in mind and soul.
I have been able to recenter and determine only what is important: our babies, our families, our friends, all of our health.
I am reminded that my job does not define me. It is a career I chose and I am more than a career.
I am also reminded that I am the only one in control of my emotions, and that is empowering.
I have been able to refuel my passion for completing our Cortez motorhome and our desire to seek a nomadic life in it.
I can see again that routine and schedule are not always beneficial, that change is grand, and not knowing is okay.
I am reminded that even the smallest encounters, coincidences, and events can teach lessons — Lessons that educate, lessons that can even shift reality. The hard part is to pause enough to take this in, to learn and to move forward for the better so for me, this time is allowing that.

I do still believe every word I typed but because of all that is happening, it has taken much effort from me to rebuild this once-peaceful state of mind — on my mentality of safety at work, on my thoughts on giving respect without receiving respect, on my views of protection and duty, on my desire to strive to be a great teacher when the entire education system is fundamentally broken, on how we — as people — treat one another and raise each other . . . again, I’m working on rebuilding my current state of mind.

But all of this has gotten me thinking — about the education system, about the treatment of teachers, about the virus, about my health, and about the future.

So back to what I wrote at the beginning: My appointment with my neurologist and our discussion on my school re-opening, along with the concerns this poses . . . .

At the start of this virus, I did research on how COVID would affect those with multiple sclerosis. Here is what I discovered: According to the Multiple Sclerosis Association of America, those at the greatest risk of serious illness include the following:

• People with suppressed immune systems, such as those who take disease-modifying therapies to treat multiple sclerosis 
• Seniors sixty years old and older
• Those with certain health conditions, such as heart disease, lung disease and/or respiratory illness, and diabetes

This information continued, stating, “Another consideration for individuals with MS is the fact that an illness, infection, or particularly a fever, can cause a temporary flare-up of symptoms . . . . “  This causes MS symptoms to temporary worsen, even though nerve damage has not actually happened.

My neurologist essentially said the same: Those with multiple sclerosis have compromised immune systems.  Combining that with disease-modifying treatments — mainly strong ones (such as infusions such as Ocrevus that I am on), immune systems are further suppressed.  Because COVID is new to everyone though, no one knows specifically how the virus will affect those with MS — Does this mean that people with MS could catch COVID more easily?  Does this mean they would have a harder time fighting the virus?  Does this mean their COVID symptoms would be more severe?  “We don’t know,” he said and this is why there should be an effort to decrease risk.

Because of this, he and I have completed a form for me to be considered as a virtual teacher in the coming school year so fingers crossed this is approved and — more importantly — virtual positions are not held in public buildings (which is desired at the moment).

Meanwhile, my doctor and I also discussed my beginning-of-July infusion, which went better than any infusion I have had before.  I talked to the nurse about how past infusions with the IV Benadryl made me dizzy, nauseous, and slur my words.  Because I have proven not to have reactions to Ocrevus in the past, she felt comfortable trying me on the pill form of Benadryl instead.  The result was amazing — I felt myself . . . and in control of myself the entire time.

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I’ve seen questions from those with multiple sclerosis about procedures for infusions due to the virus and so I wanted to air clarity on what my hospital’s infusion center did.  Before that though, realize others may be different so a simple call to the center before going is beneficial.
First, my infusion was not rescheduled due to the virus.  However, if infusions are rescheduled — for whatever reason — trust the experts.  They are not rescheduling to make your day and life miserable.  They are rescheduling for valid reasons (and if anything, rescheduling creates more of a hassle to them so appreciate the fact that they are taking time to work with you on this).
Second, masks were worn the entire time.  I know there is a huge debate on rights and comfort and whatever else but my stance is that I happily wore a mask knowing I was reducing the risk of giving someone a virus, and I happily appreciated strangers wearing their masks knowing they were reducing the risk of giving me a virus.
Third, I requested no family come with me, which meant I took naps and filled my six-hour time quite contently writing instead of being concerned about how my loved one is filling time.

Overall, for me, Ocrevus does seem to be as touted — a miracle drug.  I have not had a relapse or attack or any type of symptom since starting Ocrevus a year ago.  I also feel my energy returning and no longer need stop-in-the-middle-of-a-dinner naps at the table.

I should make note that it is true, however, that I have not had an MRI yet to prove what I feel.  At the start of the virus (and still now), I took (and take) the quarantine very seriously.  Andrew and I essentially only left our home to go to the grocery store and the Cortez.  Because of this, I was highly anxious about going somewhere new — such as a hospital for an MRI.  Not only this but with the virus, Andrew was not allowed to go into the MRI with me, making my three-hour claustrophobia-panic an incident I had to handle solo; and between all happening in the world at the time, I did not feel I could do it.  This meant I delayed the MRI . . . and then the wide-board machine (which is better for claustrophobia) broke . . . then it was repaired but still down . . . and now it is back up but without someone to run it.  My appointment that was set for March kept getting delayed so much so that I have now taken brave pills and scheduled my MRI solo at a different hospital.  That will be in the coming days so I’ll update you in another post on the results.

In the end though, the only concern I have is that Ocrevus has affected my hair in two very different ways.  The first, admittedly, is one I like.  Ocrevus has made my hair curly.

I’m talkin’ between full ringlets and beach-waves-that-women-spend-hours-creating curls.  To give you an idea of how crazy this is — My hair has been stick straight since birth so much so that even professional curls fall out the moment I walk out the salon door.  This is such a dramatic hair-change that I have no idea how to handle new curly hair.  In fact, I wrote a curly-haired friend for advice: “It is super curly one day then I sleep on it and wake up and the damn thing is straight.  There is no logic.  Curly hair has a mind of its own.”  Strangely enough, he is friends with another woman that is going through chemotherapy for cancer, and her once-straight hair turned curly too — so, I suppose, this means the common factor is chemotherapy, which makes this curly-hair change not so much an Ocrevus symptom but an infusion-treatment symptom as a whole.
The other hair change is more unfortunate: Unlike the MS pill Aubagio where my hair fell out in clumps, Ocrevus seems to make my hair more brittle, which causes it to break easily.  Because of this, my overall hair amount is less and my hairline in particular seems more susceptible as I’ve noticed it receding.  This loss has been small and slow though, and I have to remind myself that this is a skin-deep concern.  My ability to talk, to walk, to function as the person I have always been speaks more than any breaking hair.  Some days (like today) this is easy to see but admittedly, other days it is more difficult.  We are people after all, and everyone wants to feel confident and feel good.

Still, I try to focus on the positives — see the good — and has lead me further than I ever planned in life.  Therefore, if I could give one piece of advice to others on a medical journey, it would be to maintain this mentality — no matter how hard, no matter what comes at you, just try.  Focus on those positives — however small, however insignificant to others, focus on them.  Here are mine . . .

This summer, I got to work on a flower, herb, and seed farm so to say I am fulfilling a dream since a small girl is definitely an understatement.

Andrew and I are also moving along with our Cortez overhaul so much so that we recently finished our hardest (and dirtiest) job yet, which was removing the underseal from inside our steel beast.  Now that this is complete, this one job — which took many days — has now made the thought of creating and building our home inside the Cortez so real that sometimes the mere idea seems tangible. (If you were interested in our entire underseal process, watch our latest YouTube video!)

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In super heartwarming news, Andrew wanted to rescue a cat he fell in love with and so we welcomed new member Peach to our family.  This makes now those set to travel in our Cortez five: Andrew and me and now our pup-kit-cat.

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As pictures prove, this super fuzzy girl loves to sleep, which is perfectly fine with us because she had an incredibly sad and neglected life before so now little Peach is encouraged to do, well, exactly what little Peach wants. (PS — We do hope to share her story and all of our babies’ stories, including tips on introducing new loves to homes, on both this blog and YouTube so be sure to follow and subscribe!)

Now the best for last — In the most exciting news, Andrew and I got married!This too will be a post all its own, but if you were interested in why we decided spontaneously to take the official love-plunge and plan our wedding in one month during a global pandemic, our talks on this can be seen, along with a quick glance at our actual wedding — which admittedly we recorded for his family because we know being apart from your son and living in a different country (They live in England) is hard so this was a small way to share our day with them.

So to say there is a virus, that decisions are made that do not make the most sense, that the world at times seems to be crumbling around us, and that life is hard — Sure, we are all experiencing this.  However, if we pause — even just a moment — to focus on the positives, there are also parts of life that are super rewarding, incredibly beautiful and these are the parts I’m holding onto.  These are the parts that make my heart beat.  These are the parts that fuel me on.

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