Gallimaufry

(Gallimaufry defined: hodgepodge, jumble, confused medley)

All kinds of important people, events and topics pop up in one’s life, don’t they?  So that’s what we’ll link to here – a gallimaufry of topics that relate to Trisha’s work in patient empowerment and patient advocacy. Stop back frequently, or register at right for updates. You never know what will appear here!

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•  Alzheimers

My mother passed away in 2009, 10+ years after her Alzheimer’s Disease was diagnosed.  Over the years a number of Alzheimer’s issues that are empowerment issues too have popped up. Learn more here.

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•  SPTCL

The genesis for my work was my misdiagnosis of SPTCL – Subcutaneous Panniculitis-Like T-Cell Lymphoma in 2004.  I didn’t really have it, but that diagnosis will be seared in my brain for eternity.

Get more information about the diagnosis of SPTCL.

Learn more about my misdiagnosis.

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•  Guest Posts

From time to time, someone asks about posting to my blog to share their story.  I accept all stories of proactive survivors, and those who have suffered at the hands of, then moved to improve the healthcare system in any fashion they think is important. Find here links to posts from others.

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•  About Being Terminated by About.com

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SPTCL

Update October 2013: It’s been nine years since I was misdiagnosed with SPTCL, and during these years progress has been made in research and treatment of the disease. I’m so busy helping patients empower themselves in the other aspects of my professional life (see at right) that it’s extremely difficult for me to keep up!  …

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Alzheimer’s

Some background: My mother suffered from Alzheimer’s Disease (see an update), first noticed in 1998, and for many years lived in a memory/assisted living center. I’ve studied the disease, interviewed professionals, and blog about her on occasion, in hopes of helping myself, and others, learn about this horrible “long good-bye” disease. From the heartbreak of …

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Guest Posts

Would you like to publish a guest post at Every Patient’s Advocate? These stories all relate to Proactive Survivorship – moving past difficult circumstances to improve the system for others. See invitation below. ……………………………………………………. Physicians Can Be Vulnerable, Too When Dr. Ed Pullen’s wife Kay was diagnosed with Stage 3 Ovarian Cancer, he realized that …

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How About.com Kicked Top Experts to the Curb

…………………………………. (Update July 8: the carnage continues as we hear of even more About.com experts (guides) being terminated, some of whom have been sharing their expertise for 15+ years. The fear among still-employed writers is palpable.) …………………………………. About.com is on a campaign, disposing of experts (formerly called “guides”) with no explanation, abruptly cutting them off, …

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