Where Are My Pillows

For some encephalitis patients, finding good medical care is half the battle (or more) towards getting on the road to healing. Many doctors simply lack adequate knowledge or expertise to effectively diagnose and manage this condition. In today’s episode, we cover some of my thoughts on learning how to advocate for yourself in a medical setting.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

From cutting-edge research shared by encephalitis experts, to inspiring stories from patients and caregivers, #WEDConf2021 was a day to remember! Shoutout to the Encephalitis Society, the AE Alliance, the Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, and the Hashimoto’s Encephalopathy/SREAT Alliance for orchestrating a superb day of programming (not to mention their work year-round to improve the lives of patients and caregivers!).

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Most likely, recovery will NOT be linear, pretty, or fast. From one encephalitis survivor to another: don't disregard your mental health, and allow yourself time and patience to recover physically AND psychologically from surviving encephalitis.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

World Encephalitis Day: what’s it about? In today’s episode we reminisce about last year’s conference and discuss what’s going down this year for 2021.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Schooling, career trajectory, social life, family ties—encephalitis can radically throw all of these things upside down. Despite the disruptive impact it's had on my life, I'm also incredibly thankful to have overcome the worst of it and to have a renewed sense of optimism for what's to come!

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

What does medical trauma and medical system-induced anxiety feel like? Let me tell you a story…

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Striking gold… with neurologists?!! Yup! In today's holiday podcast edition, we explore some of the wonderful healthcare providers I've encountered during my encephalitis journey.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

The unfortunate reality is that the majority of doctors have inadequate skill and expertise in diagnosing autoimmune encephalitis. Making things worse, few providers will readily admit to this.  If there’s one thing to take away from this episode, advocate for proper testing and imaging investigations early on.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Anyone with an invisible, chronic illness will relate with the struggle of not being able to do the same things they were once capable of. For me, I would wonder: how much of my limits were due to being lazy vs. being sick? Now that I’m in recovery, the answer is clear.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Autoimmune encephalitis therapy: what does that look like? Listen in on what it's like to receive an IVIG infusion, a common ongoing medication used to treat this rare illness.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

In this birthday podcast, we talk about my career, autoimmune encephalitis relapse, and gratitude for the best gift of all: healing.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Fresh out of a hospital stay, I discuss the treatments I was given for my autoimmune encephalitis relapse and how the course of recovery is going.

If you’re still searching around for the right medical care or are very early into recovery, please don’t lose hope. More and more docs are steadily cluing into the nuances of autoimmune encephalitis diagnosis and treatment, and the brain takes time to recovery. Also note that everyone’s journey is different—some taking years to slowly gain back the capabilities they had before.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Caregivers play such a critical role for us patients. They also go through more than they should have to endure, sometimes without proper appreciation or thanks. In this episode I share some of what my mom and I went through when I recovered from autoimmune encephalitis the first time.

Caregivers, PLEASE take the time to take care of yourselves—and know that you are our heroes along with us on this journey!

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Listen to your gut. If your doctor is using the label of "depression" or "anxiety" as a catch-all diagnosis to explain away various other symptoms, keep advocating for further investigations (or find a better doc, if the option is available to you).

Too many people with complex illnesses are misdiagnosed with a primary mental health issue before they discover the real root of their symptoms. It took me 5 years before I was accurately diagnosed with autoimmune encephalitis.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Sometimes your mind gets stuck, but it revs back up again moments later. Other times, your entire existence becomes a trudge through a haze of utter confusion, and all you want is a piece of comfort to hold on to.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

As an encephalitis patient, neurologists can be your best friend or your worst enemy—it’s a mixed bag. Most, unfortunately, do not understand this illness well enough to appropriately address the needs of this unique patient population, and there are plenty of stories out there of medical trauma resulting from their generally dismissive nature.

If you have anxiety visiting a specialist in this field (or any new doc when it comes to chronic illness), you are not alone. I’ve now gone through over 10 neurologists and here’s what I have to say about them…

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Hear me strugglebus to explain how my quality of life has been impacted by autoimmune encephalitis. Note – this episode (as well as several others) was recorded prior to my recent treatments and subsequent healing. I’m pleased to say there have been radical changes in my health since then! Still, I wanted to upload this to provide a glimpse into my mind whilst struggling with brain fog. This is hardly during the worst of it, but I do exhibit some slower processing and minor lapses here. 

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Your brain is not left the same post-encephalitis, unfortunately. Today we talk about some cognitive struggles, and how they impact the way you interact with the world while in recovery.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Don't let this rare illness isolate you from others. Becoming part of some autoimmune encephalitis support groups has not only done wonders for my mental health—it's equipped me with the info I've needed to advocate against dismissive doctors for diagnosis and treatment.

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This segment is part of the World Encephalitis Day countdown series, which culminates on February 22, 2021!

Get ready for daily, bite-size podcast episodes delivered straight to you by an autoimmune encephalitis survivor. World Encephalitis Day is February 22, 2021 - let the countdown begin!

Wondering what life might look like 1 year after autoimmune encephalitis? Have a listen to the thoughts that come to my mind on the anniversary of my discharge last summer 🏥 .  

Please note that I made this impromptu recording—in 1 take, with no cuts, "umms" and "ahhs" left in—on purpose. Verbal fluency is something this illness has taken from me; but I hope to be able to look back in time and see the progress that I've made towards speaking with the level of fluidity and organization that used to come naturally to me. 

Today has been a good energy day, and this actually turned out a bit better than I was expecting—though still far from where I hope to be.  To clarify a few points:  

-I've been sick since 2014.

-my cognitive symptoms waxed and waned over the years until I was hospitalized at my lowest point, last year in Canada.

-the ultrasound suggested I might have a teratoma, a common finding in anti-NMDA encephalitis. By the time I had the PET scan a week later, the mass could not be found again. 

-I feel blessed to have finally gotten a diagnosis of seronegative autoimmune encephalitis in summer 2019.

-I relapsed in spring 2020, and went through another ordeal just to get Rituximab treatment in the US. The pandemic did not help.