Nothing, nothing, nothing… then BOOM! | Monthly Resilience Report: January 2021

Time for liftoff!

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:

How did this month go?

I can hardly fathom what a difference a month can make.

The cognitively debilitated, anxious girl who wrote December’s monthly resilience report is closing January feeling like a markedly different person. Thanks to some milestone moments that included receiving plasmapheresis, IV steroids (Solu-Medrol), and tocilizumab (Actemra), I’m feeling more hopeful and optimistic about my future than I’ve felt in ten plus months. TEN! I guess that’s not THAT long in the AE world (and for me, having first fallen ill in 2014), but it feels like a lifetime. I’m still weary from having only been discharged from the hospital mere hours ago (lol), but will undoubtedly write in further detail in an upcoming post.

For now, let’s just say that my mood, energy, and cognition have surpassed the high of 67.5-72.5% of my baseline levels that I peaked at last August (after my spring 2020 relapse). Regardless of how things progress from here (I still have a ways to go to get back to “normal”), I can’t express how overjoyed I am to have glimpses of my healthy, functioning self again.

I’ve met so many people on this crazy AE journey that deserve to feel the way that I do now; once I have a chance to breathe, I’ll be throwing myself even harder into AE advocacy in an attempt to prevent others from needlessly suffering from misdiagnosis and mistreatment the way I have since 2014.

Cue the voices cautioning me to take things one step at a time, lol. Seeing as February is Autoimmune Encephalitis Awareness Month, I figure I’ll hijack this post and end it by highlighting some exciting events next month:

Autoimmune Encephalitis Awareness Month, February 2021 Activities

The World Encephalitis Day Conference – Saturday, February 20, 2021

I attended last year’s inaugural conference in Dallas, TX—looking back, it was one of the highlights of my 2020. First time meeting other AE survivors in person; fulfilling experience that opened my eyes to how AE is being treated globally. This year’s has moved online and includes a great lineup of panellists.

Details here: https://wedconf.org/

World Encephalitis Day – Monday, February 22, 2021

The Encephalitis Society, based out of the UK, is spearheading efforts to raise awareness of encephalitis via social media, media outreach, and lighting up landmarks worldwide. Lots of lovely folks at this non-profit, which has been kicking around since 1994 and aims to have 50% of the general population in 10 countries aware of encephalitis by 2027.

See how you can be involved here: https://www.encephalitis.info/pages/category/wed

The International Autoimmune Encephalitis Society’s speaker series – multiple dates in February 2021

The IAES has cued up five top experts to deliver webinars throughout the month, discussing topics ranging from acute treatment, to long-term disease management, to the various manifestations of the illness, to care specific to the pediatric population.

Details here: https://autoimmune-encephalitis.org/2021-speakers/

I get that when you or a loved one are suffering from AE, you hardly have the bandwidth to dig into the research and wrap your head around the complexities of the illness. You figure that’s your doctor’s job. However, seeking out the latest word—straight from the mouth of cutting-edge clinicians—has been a critical part of my AE healing. It has enabled me to hold my ground when I’ve talked to dismissive doctors, who will tend to use sweeping neurological/psychiatric generalities and ignorance as a scapegoat for not diagnosing/treating promptly or aggressively (why so feisty, you ask? Find my rant here).

So if you’re struggling on the AE journey right now, I’d strongly encourage you to take part in the myriad of advocacy and educational opportunities this month. It can get dry, it can get confusing—but equipping yourself with AE knowledge is one of the best weapons you can wield against a medical system that is largely unequipped to handle the needs of AE patients.

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:

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