Coping with Chronic Illness: Ehlers-Danlos Syndrome » Chronic Illness

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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God’s Fire

Susan S. — Sun, 08 Nov 2009 04:57:37 +0000

It was this time last year that I had a life transforming experience while riding my recumbent trike. It stimulated my writing the following letter to friends and relatives in honor of the new season of autumn. I have chosen to reproduce it here to share my continuing joy for this new season with hopes [...]

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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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Who’s a Turkey?

Susan S. — Wed, 21 Nov 2007 01:25:00 +0000

We found a neurosurgeon and I’m scheduled for LOTS of tests next week. We reconvene with the surgeon the following week when we’ll discuss the results of the tests, which should pinpoint what part of the shunt is malfunctioning, if it is indeed malfunctioning. Hmmm. That will be the pivoting point in determining my hair [...]

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Broken Hardware

Susan S. — Sat, 10 Nov 2007 01:22:00 +0000

My shunt stopped working. We’re looking for a brain surgeon.

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It’s Working!

Susan S. — Mon, 05 Nov 2007 01:19:00 +0000

Well, I’d say its working! I’ve been back and forth the New York a couple of times to see Dr. Chainsaw and this definitely has an impact on my body’s overall inflammation. I guess the jaw bone is connected to the everything bone! So, I fly to New York every two weeks for treatment and [...]

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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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Yom Kippur 2007

Susan S. — Fri, 21 Sep 2007 04:50:00 +0000

Stepdad and I have returned from NY back to his home about four hours away from my home. We are thrilled to all be together, my husband, daughter, mother, stepfather, and grandmother, for the rapidly approaching Yom Kippur holiday. The day and a half driving trip back was difficult in that my healing pain has [...]

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Listen to Everyone!

Susan S. — Fri, 17 Aug 2007 20:15:00 +0000

I survived and I’m home amongst moving boxes and am recovering. The combination of my SOMI brace and Tempurpedic pillow kept my head and neck steady and comfortable throughout the flight home. My companion talked the entire way with a gentleman next to her as I comfortably dozed to their melodic voices, but I still [...]

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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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