With hospital systems and insurance companies requiring increased quantity of patient appointments rather than encouraging better quality interactions, no wonder I have encountered many frustrating doctors in the course of my disease. Don’t get me wrong, I have met my fair share of great doctors who provide me with the incredible care I have received over the past 2 and a half years. But most physicians are booked at 15 minute intervals–and it literally takes me 15 minutes to list the diseases I have and the medications I take.

This is a system wide problem, not a physician one (mostly).

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An NIH study points to autoimmunity as the underlying cause of more than a hundred life-altering, chronic illnesses and that 75% of those with autoimmune disorders are women.  I’m one of them.

I launched this blog shortly before January 2011, when I started a new job on the advanced heart failure unit of Sentara Heart Hospital in my home town of Norfolk, Virginia.  Having recently returned to Norfolk after four years at the University of Virginia, two years working for a hospital in the Washington D.C. metropolitan area, and six months exploring San Francisco, I was excited about taking care of patients in the very hospital where I was born. Excited about moving into a condo in the trendy Ghent neighborhood.  About my life as a 26 year old with a dream job, financial independence, and great friends who shared a passion for world travel.

Then BAM!

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Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow treatment protocols? Take better care of themselves? Especially now that payment for my services may be negatively affected by bad outcomes and poor patient satisfaction?

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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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