Every day I’m celebratin’ 🎵 | Monthly Resilience Report: February 2021

Have you ever tried to compress ~10 months of life into a single month’s worth of time?

Things uh, get a little chaotic 😅

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

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, and tocilizumab (Actemra)…

End of year reflections | Monthly Resilience Report: December 2020

I started these reports thinking that they’d be a low pressure, fun way to document progress. That by the end of 2020, they’d help me warmly reflect on how far I’ve come from my spring AE relapse.

But the scary thing is that we’ve now arrived at the last day of the year, and the so-called “recovery” remains an elusive, faraway dream. I’m well aware that there are no guarantees when it comes to how well one recovers from AE; still, I had one promising, personal data point to draw from.  I weighted that one highest.

Different highs, different lows | Monthly Resilience Report: November 2020

Good news! Bad news! Good news!

…and repeat!

Every week brought some different health surprises, the details of which matter much less than how I’m closing out this month (more on that later). Let’s just say that when there are multiple professionals on your healthcare team, the strain in coordinating communications and getting them on the same page becomes bloated.

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis (A Rant)

The world that doctors live in…

The classic story arc of autoimmune encephalitis goes something like this: a patient presents to the hospital emergency room with an abrupt onset of psychotic features that include hallucinations, paranoia, anxiety, and strange behavioural changes.

Medical Chores Galore | Monthly Resilience Report: October 2020

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.

The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with chronic illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

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