This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:
- Just meandering through the marathon of chronic illness life | Monthly Resilience Report: July 2020
- Spinning my wheels in the Texas heat | Monthly Resilience Report: August 2020
- Hello hurricane season: Flying pillows edition | Monthly Resilience Report: September 2020
How did this month go?
It… went. *cue unenthused sigh*
Eat, make some calls, attend appointments, peruse medical journals, sleep, repeat.
Most days were an exhausting barrage of monotony, all in the name of attempting to move my medical recovery forward. It’s mind-boggling how much time can be consumed just coordinating medical logistics, not to mention the cognitive fatigue that arises from keeping tabs on multiple moving parts.
All I can say is: I hope my persistence and legwork this month starts to bear more fruit in the weeks ahead.
Given my various health-related task items, I didn’t write as much as I had hoped I would this month—but did eke out some time to finish writing my thoughts for the first post in my brain fog series.
What did I do?
Neuropsychological Evaluation
I had a follow-up appointment with my neuropsychologist to go over the results of last month’s neuropsychological testing. It was more worthwhile and informative than I expected it to be, with a couple key recommendations coming out of it.
On one hand, the results weren’t too surprising given the various cognitive symptoms I’ve complained about for months. On the other hand, it was still emotional to be confronted with objective evidence to confirm my drop in functioning. Overall, it confirmed the generalities of what I already knew, while painting detailed insights that explain some of the daily challenges I deal with.
Of note, my encephalitis has resulted in deficits that fall on the spectrum of ADD (attention deficit disorder). Speech/cognitive therapy, counselling, and medication was recommended to deal with these symptoms.
Speech/Cognitive Therapy
I’m now seeing a speech language pathologist, weekly, to discuss and practice compensatory strategies to cope with my cognitive issues. I never realized this sort of rehabilitation support exists; I had always assumed SLP’s only dealt with issues relating to the mechanical production of speech.
How wrong I was!
It seems to me that, at least in the US, this sort of therapy is highly recommended for those recovering from all sorts of brain injuries. There was no mention of this when I was diagnosed with AE last year in Canada.
So far, I’ve appreciated having a venue in which to focus on granular cognitive exercises and receive feedback on how I’m attempting to implement the strategies we discuss. My therapist admits that many of her suggestions are things I’ve already figured out on my own, which is validating but also slightly disappointing. This sort of therapy would have been more useful to me had I received it earlier on in the recovery process. Still, our sessions have led to some personal insights that have resulted in tweaks and improvements to my routines and coping mechanisms.
Psychotherapy
Sometimes you just need to let off some steam, and don’t feel comfortable burdening loved ones with all the little neurotic intricacies of your concerns. That’s where I find myself these days. And I’m not alone – apparently there’s been a sharp rise in therapy demands this year, spurred on by the pandemic.
I already reflect and journal a lot; but something different happens when you hear yourself speak things aloud to a neutral party that’s professionally trained to listen. As I found out, many healthcare plans now offer relatively easy ways to book telehealth counselling sessions from the comfort of your home. Between dealing with the uncertainty of chronic illness and some other “typical “life stressors, it’s been nice to have someone to disentangle my feelings with.
Second Neurologist Opinion
By some dumb luck, a few days ago, I got in pretty quickly for a telehealth consultation with a top autoimmune encephalitis neurologist who serves on the AE Alliance Medical Advisory Board. My current Texas neurologist is wonderful; but given my fluctuating symptoms the past few months and stall in my recovery, we wanted to get another opinion on where to go from here.
I’ve dealt with a lot of dismissive and arrogant doctors in the past, so I’m always anxious when it comes to talking with a new one. However, there was no need for that for this appointment. Hallelujah! This neurologist was knowledgeable, well-reasoned, compassionate, and willing to take the time to thoroughly answer my questions.
As this appointment reaffirmed to me, there remains a lack of consensus amongst various treatment centres regarding how to treat autoimmune encephalitis (AE) patients beyond the early acute stages. Many patients, including myself, don’t have biomarkers or treatment responses that fall neatly into the parameters and standard protocols currently published.
Until we have more research and clinical trials, addressing the complexities of AE remains part art, part science.
She supports my ongoing Rituximab treatment, but her and my current doc have some differing opinions regarding protocol specifics (e.g. dose and ongoing timeframe). Also, she is big on addressing symptoms in conjunction with the underlying immune issues—which means she strongly urges me to try a stimulant to deal with my ADD-type issues.
Both neurologists have arrived roughly on the same page, at least for now; but their backend thought process/approach to arrive at the chosen treatment protocol is somewhat different. I can see where both are coming from though. I’m a little worried about what happens in the new year if I am still stuck at standstill in the same part in my recovery (or worse); but right now, we have a clear (ish) plan for the short-term. It’s nice to have greater peace of mind; hopefully something will start to click.
In any case, I am glad to have both of them on my team, that they’re collaborative, and that they are open to bouncing ideas off of one another.
What did I think about?
Barriers to Medical Access
All the little things—all relating to medical chores—can really add up.
- Doctor’s offices that don’t return phone calls.
- Health insurance agents who send you on a wild goose chase just to find basic information.
- Waiting for faxes to go through.
- Finding out medical records did not arrive at their intended destination.
- Having to reschedule appointments.
- Being left on hold. Calls dropping.
- Phoning countless offices to find a healthcare provider that meets your needs.
- Acting as the middle man between healthcare providers.
- Getting people to sign off on the right forms.
I had the persistence and time to chip away at it, bit by bit—but it sure took a lot out of me. There were many times I felt done for the day, but knew that if I just pushed myself a little more, I’d be doing myself a favour in the long-run.
But what about people who don’t have the energy or mental resources? People who desperately need but lack an advocate? Children without assertive parents? Those unfamiliar with the healthcare system and medical language?
Though my health remains frustratingly problematic, I try to remind myself that I’m lucky to have even made it this far. Without my mom to fight for me in the hospital last year and back me up along my 5 year journey to get diagnosis and treatment, I’m not sure I would be here today. It’s felt like barrier, after barrier, after barrier for too long—but I miraculously made it back to baseline last year. That buoys my current determination to find my way back from this year’s relapse and into remission today. But as I see in many support groups, it’s easy for chronic and autoimmune patients to slip through the cracks.
It’s been a nightmare to deal with AE for most of my 20s—yet here I am, well enough to at least have the cognitive capacity and wherewithal to complain about it all. Lol. It’s admittedly easy for me to get bitter about; but at the same time, that motivates me to contribute to building a future where AE and rare disease patients receive better recognition and treatment. I don’t want anyone to go through the same crap I’ve dealt with. Many of the medical barriers I’ve faced are ones that simply should not exist.
This time last year, in the midst of my miraculous post-Rituximab and IVIG recovery, I had higher aspirations for where my AE advocacy would take me in 2020—alas, with my lacklustre recovery from my spring relapse this year, those aspirations have had to be reined in. In the meantime, I remain thankful for those that have paved the path ahead of me, including the AE Alliance whose virtual support groups this month have provided me with hope and invaluable information. I’m humbled to have the opportunity to contribute to and shape the direction of some of their patient support material, currently in development…. more to come on that once it’s published on their site!
Where am I now?
I’d say in the past week I’ve hovered between 62.5%-67.5% of my baseline levels of cognition. Note that’s not some careful calculation, but based on a subjective self-rating I give myself in my daily tracker/bullet journal each day. To be honest, I’ve become less confident in my self-assessments and whether I should be trying to keep close track at all. Maybe I’m over-sensitive to perceived changes, and focusing too closely on day-to-day fluctuations and subjective narratives in my head.
Unless there are stark changes between months, I’m thinking this will be the last Resilience Report where I will include this measure. I’m on the fence though—we’ll see how I feel when it comes time to publish the next report.
More importantly, however, is the fact that I have some peace of mind after getting the 2nd opinion from the AE neurologist. Speech therapy should help. Working through emotional stressors with my counsellor should help. Stimulant medication may help. Time should help. Having faith in my doctors and not spending all my time down the PubMed rabbit hole should also help.
I’m looking forward to a less health- and medical chore-focused month of November ahead.
Keep in touch with me on Facebook, Instagram or Twitter.
This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:
- Just meandering through the marathon of chronic illness life | Monthly Resilience Report: July 2020
- Spinning my wheels in the Texas heat | Monthly Resilience Report: August 2020
- Hello hurricane season: Flying pillows edition | Monthly Resilience Report: September 2020
