When Pigs Take Flight Blog

Anti NMDA Receptor Encephalitis: How I Learned to Love the Name

I used to HATE the words Anti-NMDA Receptor Encephalitis (ANMDAre)! The name, similar to the disease it represents, is complicated and mysterious. It offers no insight to what the disease entails, unless you are a physician and, even then, you may not have ever heard of this illness, only recently identified in 2007, by Dr. J. Dalmau.

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The Missing Pieces

Three years ago, in the year 2013, I “misplaced” approximately 175 days of my life. I suppose my body decided that all of my life’s energy during that time was better spent on battling the monsters in my mind than retaining cognitive memory. My recollection of that time period disappears (quite conveniently) nearly the exact same time I was rushed to the emergency room — almost to the hour, in fact. It vanished rather abruptly, like a power outage; all of a sudden there was just blackness. And, in stark contrast, when conscious awareness finally returned, it was more akin to the dawning of a new day in winter; it came back slowly, a little at a time and never to its full strength.

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The Perception of Pain

For just a moment, imagine three young friends on the school playground having an in-depth conversation about the color purple. One of the adolescents was born blind and the other two are trying to describe what the color looks like to an individual who has never seen a flower, an eggplant, a crayon, or even a sunset. Imagine that of the two friends with sight, one sees the color purple and is reminded of a big silly dinosaur they grew up watching on TV and the other simply recalls the fresh grapes they ate last summer on a relative’s vineyard. Both are picturing the color purple and both are correct, but they have two very different perceptions of what purple appears to be, based on the input of their other senses. How can these friends describe a sensation or feeling to their blind friend? What does purple feel like or taste like?

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Autoimmune Disease: Lessons from the Inside

Living with an autoimmune disease means living with many uncertainties. But there are many things you come to realize in time, that – had you known before – may have provided some small comfort along the way. And, let’s be honest, upon initial diagnosis when the whole world seems to have shifted and the life you had planned has been forever changed, we’ll take all the comfort we can get.

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On the Soundtrack to Sanity

I’ve always been able to escape through music. music. No matter what I was struggling with, I could always find a song to help me cope or relate. I firmly believe that music has saved me from myself on more than one occasion. And even as I found myself drowning in the sea of encephalitis, I relied on the sweet escape of melody and lyrics to bring me through. I fell asleep listening to it, found comfort in it and even used it to communicate when my own words failed me

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The Real Test of Time

We, as humans, have contemplated, deliberated and sought to understand the concept of time, since, well… the beginning of time. The inevitability of its passing and the ensuing impact of its very existence on human lives has been a source of constant wonder in our ever-increasingly hectic lives. Each and every moment seems to be dictated (directly or indirectly) by the omnipresent ticking away of seconds, minutes, and hours.

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Sleeping with the Enemy

I have an ongoing love-hate relationship with sleep. I used to have a t-shirt that read “I’ll sleep when I’m dead.” That was, of course, back when my daily stamina seemed limitless and I couldn’t stand the thought of missing out on a single moment (a chaotic and, fortunately brief, side effect of young adulthood, to be sure). But I have always loved to sleep- and frankly, I was good at it!

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What Encephalitis “Looks” Like

Ever tried to explain what if feels like to have encephalitis? Sometimes mere words just won't do. This is my interpretation of what the disease "looks like." You may think to yourself that this image is chaotic and overwhelming and disturbing. And anyone who has had...

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Battle Wounds

My body is marked from head to toe with physical evidence of my various medical battles. First and foremost, there is proof of the gift of life bestowed upon me by my mother nine years ago, an approximately 3-inch-long scar that runs along my lower abdomen. Then there are smaller scars on my neck and upper chest, where various tubes have been inserted, connecting my body to machines for life-saving dialysis and plasmapheresis treatments. My arms host a few more, even smaller, nicks accumulated from bad needle pokes, the dreaded arterial blood gas (ABG) draws, and even one or two resulting from an encephalitis fit where I yanked out my own IV. Just below the surface, the veins in my arms are so scarred that these days my blood draws often must be extracted from other, more sensitive areas such as my hands or even feet. And, more often than not, bruises and small scrapes of unknown origin can be found along my legs and arms, a result of chronic anemia and post-encephalitis balance stability challenges.

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We shall draw from the heart of suffering itself the means of inspiration and survival.
[Winston Churchill]

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