wherearemypillows

I could use a good nap.
  • World Encephalitis Day: Where are we in 2023?
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  • Are we trying to reinvent the wheel in autoimmune neurological …
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  • Who ACTUALLY treats autoimmune encephalitis? Part 2: My experience with interdisciplinary …
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  • Who ACTUALLY treats autoimmune encephalitis? | Part 1: My experience with doctor …
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  • The 7 Stages of Receiving Medical Treatment, as Told by a …
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    • Mental Health Awareness Month and the RARE Compassion Program | Monthly Resilience Report: May 2021
    Resilience Reports

    Mental Health Awareness Month and the RARE Compassion Program | Monthly Resilience Report: May 2021

    “If you don’t already have trauma from living with this illness, well—we’re certainly giving you reason to have it now.”

    This was said in jest by a hilarious cardiologist that attended to me during my hospital stay in January, in an attempt to add levity to the generally uncomfortable situation I was in. Some of this was due to the innate challenges of being hospitalized with autoimmune encephalitis (AE), while…

    May 31, 2021
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    Wobble here, wobble there | Monthly Resilience Report: April 2021
    Resilience Reports

    Wobble here, wobble there | Monthly Resilience Report: April 2021

    Each month usually has a general direction or theme that I can speak to; not so much April, however. It’s been a month of everything: healing, setback, haze, peace, struggle, stress, and growth. I’m not making a beeline from A to B, that’s for sure.

    Despite the detours and the weird place I find myself today, I do have faith that I’m slowly making it through to where I want to be.

    April 30, 2021
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    This is what it took to lift me out of an autoimmune encephalitis relapse
    Autoimmune Encephalitis

    This is what it took to lift me out of an autoimmune encephalitis relapse

    The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.

    Is it safe to fly? Will I regret this later?

    April 23, 2021
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    Bumps in the Road | Monthly Resilience Report: March 2021
    Resilience Reports

    Bumps in the Road | Monthly Resilience Report: March 2021

    All things considered, I reaaaaaally don’t have much to complain about.

    That’s one major advantage of coming out the other side of a major medical issue as a young adult: recover, and the magnitude of most life issues dramatically diminishes compared to how you might have perceived the same life issues had you never gotten sick at all.

    March 31, 2021
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    Every day I’m celebratin’ 🎵 | Monthly Resilience Report: February 2021
    Resilience Reports

    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 😅

    February 28, 2021
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    Nothing, nothing, nothing… then BOOM! | Monthly Resilience Report: January 2021
    Resilience Reports

    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)…

    January 31, 2021
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