Coping with Chronic Illness: Ehlers-Danlos Syndrome

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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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 do you cope?

Susan S. — Fri, 17 Apr 2009 00:46:00 +0000

Many people ask me how I am able to cope with my illness. The answer is simple: THERE IS NO ONE MAGICAL ANSWER. In general, I use whatever works, whenever it works. And when all else fails, I simply cry. Then I pick myself up and carry on with the next challenge. *** This video blog shares [...]

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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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Cycling Seasons

Susan S. — Mon, 23 Mar 2009 20:39:00 +0000

It has been suggested by more than one physician that I might not be alive today if I hadn’t grasped the sport of cycling into my life. Certainly, the quality of my life is greatly enhanced by this luxury. I offer a prayer of thanks every time I begin a new ride. Although I cycle [...]

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Silver Ring Splints

Susan S. — Sat, 07 Mar 2009 23:18:00 +0000

*** It’s been a while since I’ve posted, but I’m getting back into the groove. *** Over the past year, I have discovered which orthotic devices are helpful for me. By far the biggest winner is my Silver Ring Splints http://www.silverringsplint.com/ . These very attractive rings have reduced the pain in my hands by about 70%. [...]

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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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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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