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VISIT NEW SITE!!!
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
VISIT NEW SITE!!!
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
VISIT NEW SITE!!!
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
VISIT NEW SITE!!!
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
VISIT NEW SITE!!!
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
VISIT NEW SITE!!!
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
VISIT NEW SITE!!!
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
VISIT NEW SITE!
Visit UCOPE.org
The University of Coping with Rare Diseases is a web site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a web site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
Visit Site
Visit UCOPE.org
The University of Coping with Rare Diseases is a web site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
The University of Coping with Rare Diseases is a web site for people coping with rare diseases, such as Ehlers-Danlos Syndrome and Ramsey-Hunt Syndrome. Pro-active coping is promoted through knowledge. Serious topics are addressed in a light-hearted and campy fashion within a virtual environment that mimics a college campus.
Visit UCOPE.org
About the author...
- Susan S.
- NC, United States
- I am a scientist, struck down in 2004 from the effects of Ehlers-Danlos Syndrome. Complications from this disease have affected many of my systems, including my central nervous system. Because the connective tissues between my head and neck have dissolved, I suffer from functional cranial settling with idiopathic intracranial hypertension and a whole mess of transient symptoms including loss of vision, speech, hearing, and temperature regulation under some conditions, such as riding in a car. I still manage to stay active and enjoy life by riding my recumbent tricycle!
Blog Topics
- Animal Assisted Therapy (3)
- Chronic Illness (2)
- Coping (11)
- Ehlers-Danlos Syndrome (4)
- Functional Cranial Settling (1)
- Holidays (2)
- Medical Travel (7)
- Orphan Diseases (1)
- Orthoses (1)
- Osteomyelitis (4)
- Pain (8)
- Recumbent Cycling (3)
- Subluxate (2)
- Tethered Cord Syndrome (1)
- Vitamin D (2)
Blog Archive
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▼
2007
(12)
- ► August 2007 (5)
- ► September 2007 (3)
- ► October 2007 (1)
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►
2008
(1)
- ► January 2008 (1)
-
►
2009
(7)
- ► March 2009 (2)
- ► April 2009 (2)
- ► September 2009 (1)
The Messy Room
Budgeting energy in the face of chronic illness is best described by Christine Miserandina in her essay, The Spoon Theory. Here's a video which shows what my room looks like when I start to run out of spoons! (Don't show my mother please.)
Click to enlarge.
My Blog List
Interesting Lecture Notes!
Click here for a PDF version of a Power Point presentation by Beth Reardon, MS RD LDN, of Duke University, on the topic: Power Eating: Beating the Odds of Chronic Disease through Nutrition. These concepts apply to pain management in that they help to reduce inflammation.
Click here for another PDF Power Point presentation. This time it is by Jeffrey Brantley, MD, Director of the Mindfulness-Based Stress Reduction Program at Duke Integrative Medicine. His talk was on Calming Your Anxious Mind.
Click here for another PDF Power Point presentation. This time it is by Jeffrey Brantley, MD, Director of the Mindfulness-Based Stress Reduction Program at Duke Integrative Medicine. His talk was on Calming Your Anxious Mind.
Posts
To contact Susan S....
...click here.
Diseño de: A. Zambrana, adaptando una plantilla de Finalsense
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