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Dreams at Stake: Finding Presence Despite Absence
http://www.dreamsatstake.com/2015/06/finding-presence-despite-absence.html
Tuesday, June 23, 2015. Finding Presence Despite Absence. I recently listened to the audio version of Elisabeth Tova Bailey's The Sound of a Wild Snail Eating. A beautiful, poignant and reflective book about surviving a debilitating illness while finding beauty and wonder in an object of nature and in quiet observation. The snail became a source of wonder and fascination to Bailey, and as her illness forced her deeper into a secluded confinement, she found comfort in this unusual bedside companion. This ...
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Dreams at Stake: 18 Years and 18 Wishes
http://www.dreamsatstake.com/2014/12/18-years-and-18-wishes.html
Tuesday, December 30, 2014. 18 Years and 18 Wishes. It was December 31st of 1996 when I first fell suddenly ill with mononucleosis. I never recovered, and was later diagnosed with the neuro-immune disease myalgic encephalomyelitis (ME). R to cope with such a degree of loss, I've had to learn to shift my thinking. Focus on what things I. Living in the moment i. S the only way to maintain a sense of normalcy, and to find joy in what gifts still remain. Recently, I stumbled upon a blog. She wanted her reade...
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Dreams at Stake: TREATMENTS
http://www.dreamsatstake.com/p/treatments.html
I get a lot of questions about what treatments I've tried in order to treat my condition. Below is a post I wrote back in 2010 that looks at some of the many things I've attempted over the years in my hopes of recovery. Please note that this is a partial list only and has not been updated in recent years. Treatments - A Long List. If at first you don't succeed, try, try again. Then quit. There's no point in being a damn fool about it. - W.C. Fields. The pathology of ME/CFS is complicated and every patien...
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Dreams at Stake: Treatments - A Long List
http://www.dreamsatstake.com/2010/02/treatments.html
Saturday, February 27, 2010. Treatments - A Long List. If at first you don't succeed, try, try again. Then quit. There's no point in being a damn fool about it. - W.C. Fields. I had to laugh a bit when I first heard this quote. Thinking back on all the hundreds of treatments I have tried and often continuously repeated despite their ineffectiveness (and, at times, counter-effectiveness), I sometimes have to wonder about myself. What was I thinking? The pathology of ME/CFS is complicated and every patient...
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Dreams at Stake: VIDEOS
http://www.dreamsatstake.com/p/video.html
This is my video testimony which was presented at the October 2009 CFS Advisory Committee meeting in Washington D.C. Below is an informational video I created to raise awareness about ME/CFS. Due to my health, it took me months to complete. Here is a Primetime Live episode about two large outbreaks of CFS in the U.S. and the CDC's failure to respond. It aired in 1996. Subscribe to: Posts (Atom). View my complete profile. Click Below to Follow my Blog. Find some of my photos for sale on RedBubble! I’...
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Dreams at Stake: August 2013
http://www.dreamsatstake.com/2013_08_01_archive.html
Thursday, August 8, 2013. Awareness Video (Revised): What is ME/CFS? A few years ago, I created a short, informational video. In the hopes of increasing awareness about ME - the extremely serious and debilitating disease from which I suffer. Due to my health, it had taken me over four months to complete. Thank you for watching, and much thanks to all those who kindly allowed me to use their photos and to briefly share their story. In using the term ME/CFS for the purposes of this video, CFS refers to the...
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Dreams at Stake: Testimony: A Glimpse into Severe ME/CFS
http://www.dreamsatstake.com/2011/09/testimony-glimpse-into-severe-mecfs.html
Wednesday, October 19, 2011. Testimony: A Glimpse into Severe ME/CFS. The upcoming CFS Advisory Committee. CFSAC) meeting will be held in Washington on November 8th and 9th. For those who may not be aware, the CFSAC exists to provide recommendations to the Secretary of Health on what directions to take in terms of research, science, care and broader health issues related to ME/CFS. I had hoped to make another video testimony. Dear ME/CFS Advisory Committee,. Myalgic Encephalomyelitis (ME), often inapprop...
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Dreams at Stake: MY STORY
http://www.dreamsatstake.com/p/my-story.html
I remember the exact moment I first became ill. It was December 31st, 1996 around three o'clock in the afternoon. I was walking down the hallway of my cheerful, two-bedroom apartment, about to shower and get ready to go out with friends so we could celebrate the new year. As I got about halfway down the hall, I quite literally and suddenly felt like I had been hit with a ton of bricks. I remember stopping in my tracks as I leaned my hand against the wall to hold myself up. "What is happening? The next mo...
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Dreams at Stake: FAQ
http://www.dreamsatstake.com/p/faq.html
ME stands for myalgic encephalomyelitis - a very serious, complex, multi-systemic disease. Studies have shown it affects the immune, endocrine, cardiovascular, autonomic and central nervous systems. in the U.S., it is often referred to as CFS or ME/CFS. For more info, please check out my " What is ME/CFS". How and when did you come down with ME? Have you been tested for other illnesses that can mimic ME, such as MS, lupus and Lyme disease? What treatments have you tried? In your 2009 ME/CFS testimony.
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Dreams at Stake: May 2015
http://www.dreamsatstake.com/2015_05_01_archive.html
Monday, May 11, 2015. Help Fund Research for Awareness Day. May 12th is myalgic encephalomyellitis (ME). ME is a very serious and complex neuro-immune disease which afflicts as many as 17 million people world-wide. One way to raise awareness is to help fund research that could lead to a definitive biomarker and a better understanding of the disease, as well as to potential treatments or even a cure. If you are able, please consider donating to the Open Medicine Foundation's End ME/CFS Project. In additio...
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