Welcome to Sharing Sunday #18!
This has been a super busy month at The Zippy with the launch of E.D.S. Awareness month.
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.
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Becca’s Story-A 19 Year Old In an 80 Year Old Body
Hi! 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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Tags: Collagen, EDS, Ehlers Danlos Syndrome, Fibro, Fibromyalgia, Frequent Fractures, GI issues, HEDS, Walking Boots, Walking Casts
My Family's Personal Stories, Real Life Stories | TinaMiller | 
May 16, 2016 10:46 pm | 
Comments (2)
One Woman’s Shares How Faith, Family & Fun Carry Her Through 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
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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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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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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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.
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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In honor of EDS awareness month, I wanted to share my EDS story.
40 Years to Zebra
It actually starts years, well decades, before I even knew I had EDS or what that word even was.
I have been sick since birth.
I was able to find records that show my hips popping out at 6 months and all sorts of notes about checking left arm, right leg, etc.
Around that time I also started having other issues but no one connected that to my hips.
When I was 5, I had my first surgery for a hernia that I either gave myself or it just came up?
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Tags: Awareness, Chiari One, Dysautonomia, EDS, Ehlers Danlos Syndrome, Gastroparesis, Hypermobile Joints, POTS, Scolisosis
Real Life Stories, Uncategorized | TinaMiller | May 5, 2016 10:16 am | Comments (0)
Mel’s FIGHT with E.D.S.
Hi, I’m Mel!
I’m 21 years old…
I’ve always had problems with joints etc..
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Rantings of An EDS Mom
I just finished our company call for my direct sales company and they announced our trip incentives.
It all sounds wonderful and I would love to go.
Who doesn’t want 4 days and 4 nights paid vacation?
No house to clean, no doctors to call, no doors to answer, no meals to cook, no dishes to do.
And then I remember I have E.D.S. (Ehlers Danlos Syndrome)
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