Monthly Archives: July 2009

Postural Tachycardia Syndrome Documentary

Looks like the Dysautonomia Information Network (DINET) folks are making a documentary about Postural Tachycardia Syndrome — Changes: Living with Postural Orthostatic Tachycardia Syndrome:


Looks like they’ve done a good job.


Ehlers Danlos Syndrome On Mystery Diagnosis – Full Episode

The full episode of Mystery Diagnosis featuring Ehlers Danlos syndrome is available to watch online thanks to Lynn Sanders. It originally aired on the Discovery Health TV channel.

Also there is an audio podcast: Marfan Syndrome and Cardiac Complications by S. Chris Malaisrie, M.D., Co-Director of the Marfan Syndrome and Related Disorders Clinic, Northwestern Memorial Hospital. It discusses aortic root dilation, heart valve issues, and aortic aneurysms.

A no frills basic info video on EDS!

Ehlers Danlos Syndrome video

Someone made a good video.

Some leeenks

Researchers from Keele University’s School of Psychology have determined that swearing can have a ‘pain-lessening effect’, according to new study published in the journal NeuroReport: Swearing Can Actually Increase Pain Tolerance

Transition in Chronic Illness Booklets: Several booklets, including Grief and Loss

Lord Shiva Kicks Ass: The Liberating Power of Loss

I’ve come to the conclusion I’ve been grieving these past couple weeks about becoming disabled. (I know, I’m kind of dense.) I have a therapy appointment at the end of the month; I’ll talk about it then. I don’t necessarily think it is a bad thing. My heart feels very open & I’m getting a good lesson in “tender heart” as Trungpa calls it in his Shambhala tradition.

(I’m lucky – my therapist knows all about Shambhala training, etc so I can talk about this stuff without her thinking I’m a kook.)

I’m sad for the things I can’t do anymore yet my newly downgraded capabilities haven’t completely sunk in yet.

I can appreciate a bigger picture so I’m not completely wallowing/drowning. But it still feels like grief and loss. ouch.