A 26 Year Old Spoonie Shares Her Story (Part 1)

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A 26 Yr Old SPoonie Shares Her StoryA 26 Year Old Spoonie Shares Her Story (Part 1)

My name is Nicole.

I am 26 years old, and a Spoonie.

Ever since I was a baby there was always something underlyingly wrong with me that held me back in life and kept me from being “normal”.

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Becca’s Story- A 19 Year Old In an 80 Year Old Body

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Becca’s Story-A 19 Year Old In an 80 Year Old Body

Becca's Story A 19 yr old in an 80 Year Old BodyHi!  I am Rebecca V.

I am 19 years old but I feel like I have an 80 year old body. 

I have been diagnosed with HEDS and Fibromyalgia.

My fibromyalgia diagnosis came after the EDS diagnosis.

What does this mean?

It means that my collagen is faulty and my joints are constantly popping, slipping, sliding, and dislocating.   It means that if I do a task for too long (like knitting) my shoulders, arms, and hands will not work properly and hurt for days.  Sounds like fun right???   My body literally falls apart with everyday activities.

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One Woman’s Shares How Faith, Family & Fun Carry Her Through Her Days of Pain

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One Woman’s Shares How Faith, Family & Fun Carry  Her Through Her Days of Pain

One Woman Shares How Her Faith, Family and Fun Carries HerThrough Her Days of Pain.

This is a story.  It‘s about me.  A woman of faith with E.D.S. #3

This means that I am “bendy” and very seldom break.  But I do often wonder “Just how much more can I take?”

I go to bed sore and wake up in pain.  It doesn’t seem to matter in what position I have lain.

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Hannah’s Story and Diagnosis

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Hannah's Story

 

Hannah’s Story

My whole life, I thought I was the biggest wimp alive.  Until one day, when I was commiserating with my sister about how we have more aches and pains now that we’re in our 30s. I explained how much pain and fatigue I have each day, fully expecting her to say something along of the lines of “Yeah, me too!”

She didn’t.  Instead, she looked at me and said, “Wow. I couldn’t deal with that everyday.”

It was at that point I realized that maybe not everyone felt as bad as me all the time, and maybe I wasn’t just being weak and pathetic. I started asking other friends and family members about their pain levels each day and discovered that I had been wrong my entire life.

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Winning the Race, Despite EDS, James’ Story of Success

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Winning The Race Despite EDS James'Story Of Success

When my son, James, was five and just started kindergarten, he was quiet and didn’t talk unless spoken to.  He was a great student, followed directions, didn’t misbehave, and I was always told he was the epitome of the imaginary “perfect student.”   Eight weeks into the school year he fell from the monkey bars breaking his arm into 9 pieces.  He never cried.  He went and sat by the classroom door and waited for recess to be over.  For the next three hours the teacher knew something was wrong but James would only respond “I’m fine.”   When they had him take his sweatshirt off because it was getting warm they realized his arm looked like a snake.

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Winner

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winner2We are pleased to announce we received 8 personal stories from our zebra friends and family by midnight last night.

We are still accepting to complete the month of May and share throughout the year but those early bird entries received the opportunity to win one our “Ask ME About E.D.S.”  awareness t-shirts.

And that winner is…….

Hannah Wingert

Hannah’s story can be found on Thursday May 12th as well as on her blog at Sunshine and Spoons.


If you would like to send your story to The Zippy Zebra simply follow the directions located on our submissions page.





One Woman’s Rise Above E.D.S.

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One Woman's Rise Above E.D.S.

One Woman’s Rise Above E.D.S.

Ehlers Danlos Syndrome.  Three ugly little words that changed my life, took everything from me, erased years of work and struggle, took away my identity.  Three words that gave me a new life, new purpose, a new appreciation for every day.

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One Family’s Journey To An E.D.S. Diagnosis

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One Family's Journey to an E.D.S. Diagnosis M's Zebra

One Family’s Journey to An E.D.S. Diagnosis

EDS is known to cause frequent dislocations of the joints. I remember hearing that my first dislocation had happened when I was three, but the stories about how it happened vary.  I found this slip of paper from a hospital showing that something had happened to my elbow when I was only 1.5 years old that warranted an X-ray.  So, it seems I may have dislocated that elbow twice.  I became a fairly careful child and haven’t had any documented dislocations since then.

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Sharing Sunday #16

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Sharing Sunday Link Up #16

This has been a super busy week at The Zippy with the launch of E.D.S. Awareness month.

33 Ways to Spread Awareness

The T-shirts we created to spread awareness are ready, are affordable and can be shipped straight to you.  NO waiting for a minimum.

You can find the link here.

We have also been sharing one E.D.S. Story a Day in our “Real Life Stories” Series.

We would love to have you share YOUR story as well.   Details on how and what we are looking for are found on our submissions page. 

Anyone submitting their story by midnight CST May 10th will be entered in the drawing for an “Ask Me About E.D.S.” T-shirt.   All stories will be printed but the T-shirt winner will be announced May 11th.

Our goal is to continue sharing at least one E.D.S. story daily as we do our part to spread awareness and how it truly affects each and every on of us.


“Sharing Sunday” Link-up is available EVERY Sunday for blogs featuring articles that will help those with a chronic illness.

This linkup is not only for the chronically ill but for everyone that has a personal story, that offers help (allergen-free recipes and ideas), adaptation ideas, testimonials or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out” link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, recipes, income earning ideas, etc… and to support each other during this sometimes, lonely journey.

Bloggers struggling with pain and challenges can visit other sites, while non-bloggers can find others like them and follow along in addition to finding recipes, tips and adaptations that may help.

I LOVE fun, crafty, anything goes linkups but the “Sharing Sunday” Link-up is not one of those.

We will have a few guidelines to keep the links useful and uplifting to our readers.

Bloggers before linking up please follow our guidelines found here.

 

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Laura’s Journey With E.D.S.

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My name is Laura, and I’m 32 years old.  I’ve had chronic pain since I was 14. I’m an artist, and I love to make stuff… but sometimes I struggle because of my hands.  This is my story.

Laura's Journey With EDS Photo

I have I a connective tissue disorder called Ehlers Danlos Syndrome.

It affects how my body produces collagen, which is basically the glue that holds our body together.

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