Zebra Retreat.

No, it is not a new safari resort in Africa. It is not a ride at Disney. Not a new game rivaling Angry Birds. And it is not a Starbucks Frappuccino flavor (although I would imagine it with hints of banana and coconut).

Zebra Retreat occurs when a rare diagnosis, or zebra, figures prominently, but the physician retreats for various reasons – perceived inertia in the system, barriers to obtaining special or costly tests, self-consciousness, or even under-confidence about entertaining a remote and unusual diagnosis (Source: Pat Croskerry, Dalhousie University).

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Well, my first round of IVIG is finished. Initially, I was due for 6 treatments over the course of 3 weeks. Each dose of 1 gram/kg. After getting aseptic meningitis after the first treatment, my infusions were spread out over 6 weeks.

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Susannah Cahalan, a journalist for the New York Post, was afflicted with a very rare autoimmune disease called anti-NMDA-receptor autoimmune encephalitis. Where my type of autoimmune disease affects the nerve roots and autonomic nerves, this type of autoimmune disease affects the brain. Susannah ended up writing a novel documenting her experience called “Brain on Fire, My Month of Madness”. She writes on a few statistics that I thought were shocking:

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I remember reaching downtown just as the sun began to set. San Francisco at dusk is a beautiful, bustling place. Brakes squeaking, fluorescent lights illuminating bars and restaurants. Riding road bikes through the streets sounds fantastic, but in the dusk, reality proves dangerous. Obstacles abound: trolley tracks that attempt to catch your thin wheels, taxi drivers whose patience is thin, not to mention the steep hills that define the city. As the orange light breaks through the small crevice between the grey cement sky scrapers, I give up. I get off my bike yelling to my companions, “I don’t have health insurance!” I thought I was cutting it close when we were descending the steep hill into Sausalito after the Golden Gate bridge. One patch of sand or small rock and us novice bikers could have met our Maker. After riding the ferry back to the city and attempting to ride fast to make it home to Nob Hill by dark, I had enough.

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I promised myself I wouldn’t be Debbie Downer (wah, waaaah). I have neglected to write because I have nothing good and hopeful to say. But today, I changed my mind. I read:

 

“Maybe your [experience] was grim and horrible, but grim and horrible is okay if it is well done.” -Anne Lamott “Bird by Bird” (4).

 

My experience is real. And I will document it accordingly.

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Radiculopathy: refers to a set of conditions in which one or more nerves are affected and do not work properly (a neuropathy). The emphasis is on the nerve root (radix = “root”). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.” (Wikipedia)

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