Days Like These: Fatigue Failure.

So this is what my day is like today: I wake up and I know that no matter what I do today—no matter what I accomplish, or how grand my goals are—I have to do one thing. I need to buy dog food. And maybe some bread. And after a good deep-breathing session, definitely some…

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The Experts: Dr. Santa Maria on Saline Therapy for POTS Patients

Dysautonomia is the kind of illness that comes unique to every patient. When the autonomic nervous system misfires and dysfunctions, it can leave a patient with a host of perplexing symptoms that affect nearly every major organ system in the body. From heart-pounding Postural Orthostatic Tachycardia to painful gastroparesis and disorienting migraines—this is an illness…

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Tilt Tables, Terrorists and Too Damn Hot

  Are you a patient with chronic illness or a rare disease? Well, I’m pretty sure your legs weren’t obliterated in a terrorist attack, imploded by an exploding fertilizer plant, or shaken and stirred during a 11.47 magnitude earthquake. So this may be a good time to quit bitching. Boy. There’s really nothing like a 24/7 streaming…

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And the Winner Is….

Oh my god, Florida is a hot mess right now. The whole country is a hot mess right now actually. But more specifically, Florida is literally a HOT mess. As in 9,000 degrees of motherfucking sunshine in my face. Get out of here with that UV.  I don’t need that. Nobody needs that. Urgh. Okay…

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Getting Personal at Global Genes

One of the main goals when I signed on board with Global Genes was to give a platform to the many voices of knowledgeable and weathered patients, parents and advocates in the rare and  genetic disease community. I wanted to be able to have writers share real stories, tips, and advice. I’m so happy to say that…

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I’ve Been Busy, Just Not Here!

Remember that whole me-being-a-freelance-writer-thing? Yeah. About that….   The Floor Vanity: Because You Can’t Afford A Fancy Piece Of Furniture To Apply Your $5 Concealer How to trick out that little space on the ground where you do your makeup. Read it at xoVain.com!   Teaching a Child with Rare Disease to Cope: Tips for…

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