The Early Years- “When EDS Was Still Fun”

Picture for blogHi!  I am a married Zebra mom with two (diagnosed) Zebra teen girls and one teenage son.

Why do I refer to us as zebras?   You can find those details here.

The accessories at our house tend to come from a brace catalog, more than Glamour magazine, but the good news is… we match!  I am currently involved with two blogs, spreading EDS (Ehlers Danlos Syndrome) Awareness, making crafts, homeschooling my youngest daughter and various volunteer activities in my town.  I had not planned on sharing my story when I began this blog, but after multiple requests for my story, I felt I should share it here and make it accessible to everyone.  To me, my story is boring and uninspiring, so I keep sliding it to the bottom of my stack, but here goes….for all those who have asked.

My Story:

Part 1 –The early years with undiagnosed EDS; when being bendy was fun.

I had a fairly normal childhood, with accidents and illnesses.  I was sick more than any kid I knew, and it seemed to always be due to allergies or sore throats.  I was constantly on an antibiotic or home sick.  I was accused of being anorexic, anemic, bulimic and anything else that had been thought of in the 70’s and 80’s, but every test was negative.

I can actually remember my age or where we lived based on the illnesses and injuries I experienced.   Who, besides an EDS patient, does that?

As a preschooler I managed to catch the Chickenpox immediately prior to Christmas and was allowed out of quarantine, just in time to catch Strep-Throat/Scarlet fever immediately after Christmas.  My poor Momma.

In First grade I temporarily lost the  hearing in one ear, which they blamed on repeat trauma to the head.  They still are not certain how I lost it, or why it returned but it still can give me issues when I crack my head.

Somewhere in here, I also had a nasty bike accident that left rocks in my head.  Yep, they’re still there 40+ years later.  I mangled my bike pretty good and still walked away with only nasty abrasions.  And  of course, rocks in my head.  Yes, it is an ongoing joke.  I believe my EDS kept me from further damage since I simply twisted and turned my joints, in all kinds of strange ways instead of snapping and breaking.   Let’s put it this way, the accident was nasty enough that the first thing a neighbor said when we reconnected 5 years ago on Facebook was…”I will never forget the bike wreck you had on our corner.”

In Second grade, I fractured a growth plate in my ankle, not to mention suffered a serious concussion when a “train” of roller skating teenagers lost control and landed on top of me.  I also ate a banana, swelled up all over, and quit breathing due to a sudden allergic reaction while in one of those old fashioned heavy leg casts.   Embarrassing picture below.

Life with EDS - The Early Years

Aren’t I adorable with my little Donald Duck?

Third Grade, my head was stopped by a brick wall while while playing tag.  My legs and hips stopped, but my upper body kept going.  Thanks EDS!  Now, every time I hit my nose or the front of my face with force I am assaulted by the smell of bricks.

In Fourth grade, I just had to go “ice sliding” with the boys and busted my chin open on the asphalt and ice.  Once again, bones should have been broken but weren’t.  Just stitches were required to stop the bleeding a repair the skin.

For Fifth grade, I managed to damage my left arm, shoulder and wrist with no specific trigger.  It was that year a learned to be more ambidextrous which has proven to be useful over the years.

Sixth grade was rather uneventful.   Thank goodness, my poor momma deserved a break.

7th grade, was the first real sign something else might be wrong.  I woke up one school morning, completely paralyzed in the neck and shoulder area.  I could not turn my head in any direction, due to “overstrained” muscles.  Thankfully that paralysis did pass, and I was able to function after treatment and time but my momma made me give up school slow-pitch softball because our daily practices seemed to trigger pain and issues.   I could throw the ball a good distance but then my arm didn’t work quite right afterwards and simply ached and ached for days.  Of course, NO-ONE had a clue what the problem was at that time.

That summer began my experience with an overly sensitive stomach, which caused a few visits to the ER for unexplainable pain.  Pain so intense, I doubled over and tried to collapse on the summer softball field.  Mom let me stay in summer ball- even if I had to stay in the outfield.  I was forced to give up ALL soda, and even now a tiny sip of the wrong kind and my stomach swells up like I am 5 months pregnant, in a matter of minutes.  Great for a quick Halloween costume, not so great for the pain it causes, or trying to finish a meal.

Rather than overwhelm you with details I will send you here to read the events and problems of my teens and early twenties.















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  1. The Zippy Zebra Rantings of an EDS Mom - The Zippy Zebra — May 3, 2016 @ 2:44 pm

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