This post is part of my Monthly Resilience Report series. You can find last month’s here.
This illness, man 😕 .
Just when you think you’ve landed on stable ground, you find your feet giving way to quicksand. At least, that’s been my journey with autoimmune encephalitis (AE).
Did I enjoy smooth waters on the heels of the improvements I mentioned last month? Nope! As recent blog posts have signaled, the course of my recovery after relapsing this spring is unfolding much differently from the first time I recovered from AE.
How did this month go?
Despite the tepid blog introduction, this month was decent—probably the best since May, when I received Rituximab to wipe out the B cells presumed to be causing my cognitive difficulties. I’m content with the way I’ve been handling the things within my control, and there are so many things for me to be grateful for. My husband and I continue to enjoy quarantine life away from the frontlines of the pandemic and social unrest—him working from home, me focused on recovery. I don’t take these luxuries for granted.
However, this is a health blog. No surprise that these Resilience Reports have a heavy emphasis on how I’m doing health-wise, in the context of recovering from encephalitis. Through that lens, the end-of-month assessment is less rosy—not the best, but not the worst either.
My frame of reference is how I’ve responded to Rituximab in the past. Last year it worked wonders: between weeks 7 to 10 after my first infusion, I recovered ~100% back to my baseline levels of functioning. I made a graded return back to work, excelled in my marketing career, negotiated a sizable raise, and finally made my long-awaited move to the US to marry my fiance.
Fast forward to spring 2020, and I found myself in a mad scramble to figure out a new healthcare system in the midst of a relapse. Things came together in the end, but not without my world turning sideways.
By the time this post hits publication, 15 weeks will have past since my last Rituximab infusion.
There’s been no sudden improvement.
There’s been no “Aha!” milestone moment.
What there HAS been is a “2 step forward, 1 step back” progression. Which is to say: there’s been a gentle slope of improvement, but not without some darker days too.
And with that, let’s dive into what I’ve been up to.
What did I do?
Returned to the drawing board
“How soon does it take for Rituximab to work?” This question comes with a different answer depending on whom you ask.
The middle-of-the-range response I’ve received from my own doctors is 6-8 weeks. And my first Rituximab experience checks out with this. So when I perceived some cognitive regression early this month after having a positive week 10 at the end of July, I went into a slight panic mode.
Rituximab is extremely effective in many AE cases, but not 100%. Sometimes, other parts of the immune system need to be addressed.
Wondering about other treatment protocols and whether mine might require alteration, I scoured patient groups and research papers to find out what else is out there. I found out that some have success with oral medications, as well as other infused biologics.
Ultimately I decided to get a second opinion from an AE specialist in my state. I love my current doctor—but given that he’s a neuro-oncologist with more natural interests in cancer, I wanted to see what another set of eyes might add to the discussion.
The effort turned out to be a huge disappointment. At the least, I thought I could get answers to my questions relating to the latest treatment protocols—but instead, my curiosity was met by variations of “let’s do more testing and get an updated MRI before we consider anything else.” It didn’t help that the doctor was running late and had her resident handle the majority of the appointment. Still, that’s no excuse for deflecting questions and making assumptions about my case history.
I usually try to give people the benefit of the doubt—maybe the doctor had an off day? Maybe she has had trouble with seronegative (no known autoantibody detected) patients before? I’ve heard great things about her from seropositive patients. In any case, I felt like I was left spinning my wheels, with past medical trauma stirred up to boot. The experience spawned this blog post: how to bounce back from a bad doctor’s appointment.
Thankfully, that experience was followed up by a positive appointment with my primary doctor. After talking out the options he’s aware of, we decided to give Rituximab some more time to (hopefully) work its magic. More on that at the conclusion of this post.
I’ve dabbled off and on with meditation in the past, but I’m not great at keeping up a regular practice. I end up forgetting about it and becoming absorbed in other mindless things instead. However, I know meditation does many people a world of good. And with the freed up time on my hands, I’m trying to incorporate as many activities into my life that promote wellbeing as possible.
Two things have prompted me to revisit meditation: it’s a recurring topic of discussion in the health and neuroplasticity circles I’ve been paying attention to, and a dear friend with AE told me about live daily morning meditations held on Instagram. In addition, I’ve had success with incorporating yoga into my daily morning routine—I figure I’ll try to see meditation as a natural extension.
I recently picked up the book Full Catastrophe Living by Jon Kabat-Zinn. He’s known for creating a program called mindfulness-based stress reduction (MBSR), which was developed at the University of Massachussetts Medical Center in the 1970s and is rooted in meditative principles. Reading it has played a big part in convincing me of the healing benefits of meditation.
But how do you go from knowledge to implementation? Well, that’s where group meditation comes into play. If you’re struggling to make time for something or to stay motivated, finding like-minded people engaging in the same activity can be a useful strategy to employ.
In this case, I’ve been tuning in to Roger Gabriel’s 10:30 CST meditation on the @chopra Instagram feed. My mind naturally tends to resist meditation, so it’s helpful to have this set time everyday where I know I should take a pause and tune inward. At this point my attendance is hit-or-miss, but I am hopeful that meditation will start to become a more ingrained habit in the months ahead.
Survived my first Texas summer
Being a Canadian girl 🇨🇦 , I was warned of the Texas heat and the highs it can reach (100+ °F?! I hail from a town that has snow 6 months of the year….). All I can say is: thank goodness for air conditioning! That is not a standard feature of life back home where I’m from.
What I DIDN’T consider was all the creepy crawlies that come along with heading south, towards the equator.
….! I’m a classic wimp in this department.
Imagine me collapsing in horror (and my husband ‘s amused laughter) when I spotted a worm cruising along like a mini snake on our kitchen floor. A similar scenario occurred less than a week later, when a dark long centipede entered my field of view during yoga—inching vertically up the wall, making its way higher than my head.
Then you have the fat cockroaches you might step on in the night, when it’s dark and your glasses are off.
Or the furry tarantulas waiting to greet you when you open your apartment door.
Sometimes it’s refreshing to realize power struggles in the animal kingdom might get you before you succumb to your health challenges, y’know?
What did I think about?
Autoimmune encephalitis, one year later
I was discharged from hospital 1 year ago this month. That anniversary has cast an additional layer of reflection upon August, with ponderings of how summer 2019’s developments (i.e. diagnosis) fit into my overall life scheme, and what the past year signals about my life ahead.
I thought post-diagnosis life would prove easier than the preceding 5 years of mystery illness—and indeed it has, in many ways. But it turns out that the full hardware upgrade I thought I had by November 2019 still had some latent bugs. Only four months after feeling like I arrived on top of the world, I didn’t expect to be relapsing again with cognitive dysfunction.
Most days I’m fine—I’ve figured out how to maintain a positive headspace despite all the uncertainty AE has embedded into my life. For the most part, at least. There’s still the occasions where AE’s unique emotional challenges knock me around a bit (see this recent post), but they’re generally manageable. Drastic peaks and troughs in functioning ability are just one of many familiar elements that make up my life.
Maybe it won’t always be this way; in fact, I’m optimistic that the field of AE will continue to evolve and result in an improved quality of life for those afflicted with the condition.
But in the meantime, I’ve developed an acceptance of the fact that my illness really is chronic. Maybe that’s a bit morbid—no one wants to imagine that AE has marred their body for life. If you’re dismayed by my words right now, please realize that many people go on to live carefree, healthy lives and never re-experience AE symptoms again. I sincerely hope that’s you. Remember, AE impacts everyone differently; all of our bodies deal with autoimmunity in different ways.
In my specific case, there’s a strange sense of freedom in accepting the delicate nature of my body. I’m no longer in the limbo of thinking “one day, everything will be back to normal.” I’ve had too many relapses and remissions over 6 years—including the recent one after being diagnosed and receiving heavy treatments—for me to still thirst after and expect a normal life.
That doesn’t mean I’ve lost all hope— just that I’ve let go of the attachment to attaining a sustained, stable body equilibrium. And that I am determined to have a life well-lived, independent of how functional my mind or body may be.
Maybe I’ll be eating my words a few months from now, swimming in misery—oh well, so be it. I like to think I’m not too mercurial; but I also don’t see the point in worrying about coming off that way in the future. For the time being, I’m at peace with having arrived at these conclusions. And I’ve decided it’s more than enough for me to feel content right now.
Do I want Rituximab to restore me back to full health? Of course! But I don’t want to live my life dependent on that one possibility.
If I’ve already reached the height of my capabilities, and things don’t improve much from here—well, that sucks; but I don’t want to spend the next 6 years of my life hyper-preoccupied with whatever the outcome of my latest treatments are. I want to spend the remainder of my life as if the levels of my functioning just don’t matter, happy with how I’ve taken charge of aspects of my existence within my control
While easier said than done, I think I’m on my way towards making solid steps in that direction. For one thing, I’m working on creating more enriched social connections, without being as self-conscious about what’s going on in my brain. For another, I’m learning how to take things day-by-day without letting the emotional residue of the past spill into the present moment.
I imagine this will remain a work in progress for a long time to come; but right now, I’m happy to notice growth in this direction at all.
Where am I now?
Looking back at what I’ve written for this month’s report, it seems that I’m all over the map—moreso than I first realized.
Am I doing well? Yes. Am I doing not so well? Also yes.
I guess there’s space for both realities; but to come full circle, we’re going to end this post on how the ol’ Rituximab train is going.
My doc and I decided to go ahead with another Rituximab infusion at the start of September. I’ll be receiving it just shy of 4 months past my previous treatment, at about half the usual dose (~500mg instead of 1g). Most AE patients seem to be put on a 6-month Rituximab schedule at 1g, but I’ve noticed some centres are finding more success with putting people on a 3-4 month interval instead.
We decided this would be best in my case, since my spring relapse came about 4 months after my November 2019 dose. I also don’t want to lose any of the gains I’ve made in the past few months; should I backslide even on the 4 month interval, then we’ll know I need to try another medication with a different effect on the immune system.
All in all, there’s been slight improvement this August vs. July. This past week I’ve been experiencing days at about 67.5-72.5% of my baseline level of cognitive functioning, versus the 65-70% I mentioned last month.
That’s not quite the leap I was looking for, but I’m happy to report some level of healing nonetheless. Fingers crossed the next Rituximab treatment will bring more 🤞 .
This post is part of my Monthly Resilience Report series. You can find last month’s here.