One and a half years ago, I started taking Ocrevus (ocrelizumab) to control my MS, which had breakthrough activity on my previous drug, Plegridy. Keep in mind that these are drugs that slow disease progress; there is no cure or known cause for our disease. But even in my seven years of illness, we’ve come a long way; I have hope!

Ocrevus is an infusion I get in a clinic/hospital every 6 months. It initially killed off all of my B cells, and the follow-ups are just like “booster shots” to make sure any re-proliferating B cells are also destroyed. If you aren’t a physiologist, these are the cells that make antibodies against foreign invaders when we get sick. So, I technically have no antibody-making capability… (yet, my bloodwork always shows some antibodies; there must be some redundancy in the immune system, which is good!)

Ocrevus was found to be highly effective at preventing MS relapses beyond the 1-year point (after first dose), hence its appeal, despite reduced immune system. However, I’m doing something that I’d otherwise never do: I’m taking a drug that hasn’t been around for that long. Sure, it went through years of clinical trials; but I’d love to see 10-year or 20-year data (I studied too much of this stuff in graduate school…)

But, when you have an aggressive form of a possibly-debilitating disease, you take calculated risks. And Ocrevus is one of mine.

So far, so good…


A mouthful of a word, for sure. But for those of us with brain and spinal cord damage, it’s mighty important.

Imagine that you need to drive from Seattle to Portland regularly for work. There is one major interstate that gets there. One day, a major storm (or, insert other disaster) destroys a bridge on said highway linking the two cities. So, you have a choice: either give up the job (and, ever visiting Portland again, it seems), or find a new route.

Initially, your new route would be slow. You’d be taking small, local roads, trying to find the new optimal path. Speed limits would be slower. But you’d eventually get to Portland. Plus, with more practice, your route would become a quicker drive, and get you from Point A to Point B more quickly.

That, in a nutshell, is neuroplasticity. Sure, I might have significant damage to parts of my brain and spinal cord, and messages might not be able to travel from one part to another like they used to. The good news? There are almost always alternative paths to send that information. They just have to be trained. And not just once, or even twice. But my dedication to seemingly small exercises has gotten me walking and functioning almost like a “normal” person… whatever that means. 😉

And it’s all because of neuroplasticity.

No, of course not. The husband and I are still very happily married, thankyouverymuch!

Many of you who know me personally are aware of my obsession with traveling. Even when I was a child, I would look through travel agency brochures and dream of places like London and Paris (both of which I’ve been to… and my appetite now skews toward the more exotic! Can’t stop me…). Growing up, I road-tripped with my family so many times that they honestly only fueled the fire. Perhaps my curiosity about other parts of he world goes hand-in-hand with my inquisitiveness as a scientist?

But I digress.

As the years have progressed, and finances and time have allowed, we have accumulated several destinations. When MS entered my life, there was even more inspiration to see things while I can — especially anything requiring activity.

Then, Ocrevus entered my life… significantly compromising my immune system. I can no longer receive some of the vaccines necessary to enter parts of South America and Africa (namely, the yellow fever vaccine). If only I’d thought about that before starting this drug almost 2 years ago… Supposedly, one can use a physician’s note stating that they cannot receive the vaccine, and still enter the countries in question; but, do I want to risk getting yellow fever? (Or, do I just travel during low mosquito season?)

Yes, I understand that this is a “first world problem” and that I am very lucky to be able to travel at all — but not being able to completely fulfill my passion is frustrating.

I am going to be scheduling a consultation with a travel nurse, to discuss this further. Meanwhile, I am focusing on scheduling trips to places that I can still visit, which may be less accessible if my disease progresses…

Almost nine weeks ago, I had surgery to repair a ruptured ligament in my left (non-dominant, luckily) wrist.

You may recall that I also receive infusions (Ocrevus) which deplete my immune system, to ward off future MS attacks.

And, my students have been sick in droves the past few weeks.

What do all of the above have in common? My immune system and healing processes have really been taking a beating recently.

Over the past month or so, I’ve been routinely been fighting a mild, yet annoying, sore throat. (Minor upper respiratory symptoms are common for me these days, given my Ocrevus therapy and my job working with the public.) Also, the timeline for my wrist’s healing has been slightly slower than expected. Well… put it all together, also considering that I’ve needed more sleep recently: maybe my body’s just crying out for more support.

It’s times like this that it’s difficult to figure out how to balance life. I understand that, as an MS patient, I occasionally have to let things slide; but it’s so hard. Common sense would say to take it easy, to rest until my body feels well again. But, as someone with significant MS damage, I can’t rest too long. Resting and inactivity may as well be my death sentence.

The end of the quarter is in two weeks, and one of my jobs shuts down for a while… just gotta hold on.

If you have a chronic illness, between flareups, fatigue, appointments, and just managing the little things, working a regular job is a challenge.

Yet… somehow, I manage to maintain 115% workload between two schools during the academic year (during the summer, I’m at just under 50% with one). And I maintain my health? How?

Online education — that’s where I do about half my work. (Twenty years ago, I wouldn’t have been able to write this post!) I am very lucky, being able to work only a few hours on site each day for a face-to-face school, and do the rest of my work at home. The work at home, between the two jobs, adds up, and I especially have to be disciplined with time during the weeks that I have multiple doctor’s appointments also eating into my schedule. But those mornings when my body is slower to get going? Yes, I still wake up early and start work early, but it’s nice to do it from my couch, and not have to sit in traffic to get to an uncomfortable desk.

Jealous? Well… the school I work for is growing by leaps and bounds, and hiring not only educators, but all sorts of people. (Some positions are not remote.) Check out Western Governors University (WGU) to see if you can find a new online workspace! And, you, too, can be blessed with a convenient schedule to work around the oddities of chronic health problems!

So, I have “relapsing remitting MS”. Or… is it “relapsing MS”? This one’ll take a while before the community will accept the semantics difference. Let’s explain.

The majority of MS patients (including me) have a variety called RRMS (as I mention above), where relapses of disease activity occasionally pop up. Sometimes things return to baseline, but sometimes some damage and symptoms remain. Obviously, then, the fewer relapses we have, the better off we are, so many of us are on medications which will slow our relapse rate.

Now, consider how “remission” is defined for most diseases: it is a period of 5 years when the disease has been quiet/asymptomatic in the absence of treatment.

While some of us have had a five-year asymptomatic period (I came close, one month shy!!), I was on a disease-modifying medication at the time…

Thus, I, and a few other clinicians, prefer the term “relapsing MS”.

(In contrast — yes, there is a more scary progressive form, where one is in steady decline, called progressive MS.)

How do we all feel about the semantics here?

I’m sure that, by now, you’ve heard about probiotics. They’re everywhere! (Almost literally, in fact…) They’re found in pills, in fortified food and drink… sometimes they’re naturally there (looking at you, yogurt and sauerkraut).

These little bugs help to fortify the bacteria which live in our gut — otherwise known as our large intestine. As recently as 10-15 years ago, our gut bacteria were believed to have a fairly limited role, though still a beneficial one. Now, gut bacteria are implicated in all sorts of diseases and disorders — even mental health and obesity!

In fact, recent scientific studies have shown that those of us with MS have a different composition of gut bacteria than everyone else — we all have a variety of species. We still don’t know what that means, but it would be great to, someday, treat our MS through our gut rather than killing off immune cells, don’tcha think?

With all of the brands of probiotics one can buy, it can be quite confusing when we’re trying to figure out what to take! Especially with the wide price ranges, I’m often left wondering if the more expensive ones are any better. One of my specialists, who has looked into this, told me to make sure the brand that you use contains at least three species of bacteria, especially for MS patients. (Probably not a bad idea for the rest of us, either.)

Lastly, I have shared several research papers with my nutrition students over the past few years which have stated a correlation between greater variety of gut bacterial species and overall health. A good, whole-foods diet will help keep this in check. Things that are bad for our gut microbial health? A lot of the same of what’s bad for us: the Standard American high-sugar, high-processed, excessive alcohol diet. Treat your little bugs well!