Coping with Chronic Illness: Ehlers-Danlos Syndrome » Pain

Susan and the Snakes

Susan S. — Wed, 21 Dec 2011 00:29:00 +0000

I haven’t posted in quite a while. Life is difficult, but good! I made this video for ya’ll. Happy holidays to all, with a new year chock full of joy!!! Susan S.

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When The Answer is Clear: Stage I

Susan S. — Sat, 04 Jul 2009 15:10:00 +0000

The quest for an accurate diagnosis when riddled with atypical symptoms is emotionally painful and can test the emotional fortitude of even the most devout optimist. So many of us with mysterious ailments have blogged about desperate needs for an ICD-9-CM code, and the validity that comes along with it. Instead of finding explanations for [...]

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Celebrate the Day

Susan S. — Tue, 05 May 2009 14:35:00 +0000

I recently attended a local, outdoor event which included terrific community performers. The day was beautiful and the mercury peaked at about 90 degrees. My body’s inflammation level was low, so I was able to cycle from my home to the event and enjoy the performers in the comfort of my recumbent trike’s seat. Ahhhhhh. [...]

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How I Cope When All Is Bleak

Susan S. — Wed, 01 Apr 2009 20:37:00 +0000

I don’t always have the perfect attitude, but I try to keep in mind that things tend to get better when everything is really bad. Statisticians refer to this as the floor effect. This video shows what I look and sound like now that everything seems really lousy. Please ignore the fact that I’m overdue [...]

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Lots to Think About Now

Susan S. — Thu, 31 Jan 2008 01:29:00 +0000

It’s been a long road so far, but alas it appears that there might be a resort full of lively activities just over the horizon, waiting for me to check in. Unfortunately, the road between here and there is partially ‘unpaved’, but with the support of my family, we’ll make sure our wheels are ready [...]

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Autumn’s Chainsaw

Susan S. — Wed, 17 Oct 2007 04:54:00 +0000

I’m not sure who painted this mornings picture, but who ever did it, she is a very gifted artist!. It appears that autumn is finally here as the strong light of the early morning sun pointed all attention to emerging colors of orange and red amongst the rolling hills of green trees. This is the [...]

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Stepfather Part I

Susan S. — Mon, 17 Sep 2007 04:43:00 +0000

I know that the term “stepfather” has a negative connotation to it and we’re supposed to use better sounding words such as “bonus father”, but my mother’s husband has truly stepped in as my father. I have no problem referring to him as my stepfather because that is exactly who he is to me. I [...]

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Visiting Dr. Chainsaw Part II

Susan S. — Tue, 14 Aug 2007 20:12:00 +0000

I’m in LaGuardia airport waiting for my very delayed plane for home. I’m in pain and feel extremely sick. I lay down on the floor to try and sleep and eventually had to settle for a seizure instead. Hmmmm. Imagine having a seizure on the airport floor? Well, no one seemed to notice and from [...]

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Visiting Dr. Chainsaw Part I

Susan S. — Sun, 12 Aug 2007 20:08:00 +0000

I’m in New York and despite Dr. Chainsaw’s handy work at oral surgery on me today, I had a lot of fun on Time Square tonight with my companion. We ate at the Hard Rock cafe and the break from stresses of medical meltdowns and preparations for moving when I get back made me feel [...]

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Moving with Vitamin D

Susan S. — Wed, 08 Aug 2007 19:56:00 +0000

I’m exhausted! I would say our house is about 78.6% packed up in preparation for our move to Raleigh. I have to go to NY in a couple days for some ‘maintenance’ work on my facial bones, and then its back home just in time for the drive to our new home. Oy. Scared and [...]

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