Chronic Invisible Awareness Week

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Chronic Invisible Awareness Week

Postby Faith » Sun Sep 09, 2012 6:15 pm

Since PN is an invisible illness, I wanted to make sure everyone knew that this week September 10-16 is Chronic Invisible Awareness Week (which was started 10 years ago by author Lisa Copen to provide awareness and support for those with chronic illness). This year there is going to be a virtual conference with great topics ranging from marriage, relationships, parenting, working from home, how to keep it together when everything is falling apart, how to live successfully when no one understands your illness, etc. Here is the schedule for the virtual conference All times are listed in pacific time, but all the presentations will be availabe to listen to at a later time if you are unable to catch them live. In addtion to the conference there are also a lot of great articles and resources that can be found at http://www.invisibleillnessweek.comJust thought I would share since this might be beneficial for a lot of us!!
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
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Re: Chronic Invisible Awareness Week

Postby helenlegs 11 » Mon Sep 10, 2012 12:07 am

Didn't know such a thing existed, fantastic. Thanks Faith.
Obviously (British)I have watched the paralympics with awe. Well! Awesome would be an understatement ;) There were a couple of girls in the swimming events that did have nerve damage. One British girl had been a competitive open water swimmer and had been kicked on the shoulder during an event, resulting in nerve damage. She looked absolutely fine, until she swam and one arm didn't match the other through the stroke. (I think she only achieved ONE gold medal :shock: :D )
It's probably a stupid comparison but nerve damage IS an affliction (obviously) This girl may suffer pain, then again she may not. . . . . I know that sometimes we may get annoyed that it is an unseen, 'hidden' affliction, although I, for one, wouldn't want to wear a badge.
However, I am quietly pleased that something like this does exist. It makes me feel . . . . . connected.
I have nothing apart from a slight limp to show, (and the odd grimace or unavoidable squeak, catch of breath) and I have no wish to tell my problems to all and sundry, but it is nice to know that there is an invisible illness awareness week. It makes me ( NO! my pain problems, which ARE NOT me!) feel more understood??
It's good to know, some are aware and are making others aware too.
Take care,
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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