During the month of May we have been sharing E.D.S. Stories in our “Real Life Stories” Series. I am thrilled to say that we were able to share 13 personal stories with social media.
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.
Our goal is to continue sharing at least one E.D.S. story a month to spread awareness and demonstate how it truly affects each and every one of us.
We are also wrapping up our online fundraiser on May 31st. 25-30% of all sales will be donated to fund EDS Research. You may click here to learn more.
“Sharing Sunday” Link-up is available EVERY Sunday for blogs featuring articles that will help those with a chronic illness.
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I just want to be well for my son. A Mother’s Story
I don’t even know what healthy is!
But my son needs a strong and healthy mom.
I’m a 27 year old disabled mom with a rare syndrome called Ehlers Danlos Syndrome type 3- Hypermobility. It’s a multi-systemic disorder, meaning it effects, in severe cases like mine, almost every single body system. It’s caused by a defect(s) in connective tissue. Collagen is mainly effected, which the body contains about 85% of!
I remember the pain started around the age of 7. It was nerve pain from carpal tunnel and tarsal tunnel syndrome which was the worst! I was told I was being a baby about it and that it was just growing pains (I am quite short, only 4″11.5″.”) It was joint pain daily as well, with some muscle pain.
I also had panic attacks from all the pain, it was so overwhelming, I couldn’t sleep and got gastrointestinal migraines.
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Tags: CCI, CFS, Chiari, Cranial Cervical Instability, Ehlers Danlos Syndrome, Gastroparesis, GERD, Helping Your Unusual Child, Hypermobility, Parenting with Chronic Illness, POTS
Real Life Stories | TinaMiller | 
May 26, 2016 11:46 am | 
Comments (0)
My primary doctor has referred me to a rheumatologist, who I will see in June, because my last blood test revealed a positive ANA panel. This means I likely have an autoimmune disorder, on top of everything else.
I am scared to go see this specialist, as my last rheumatologist I saw outright told me I was crazy (!), was too young to have so many problems, and that I was obviously making it all up, I was being dramatic, and it was all in my head.
It’s a tale too many chronically ill patients hear.
I’m not being dramatic; I’m being honest.
I wouldn’t be paying a medical professional to help me if I wasn’t at breaking point!
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To view the beginning of this Spoonie story click here.
20 years of failed allergy injections are also now behind me; new allergies were diagnosed, but I was able to stop my injections.
I actually feel better OFF the injections than I did when I had them.
Go figure! Despite increased medical costs in this state, moving to Florida was the best decision I have ever made.
As far as my diagnoses go, I have quite a few.
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Tags: cardiologist, Chronic Illness, CLassical Type, Dysautonomia, echocardiogram, EDS, Ehlers Danlos Syndrome, Fibromyalgia, Hypermobility, Marfans Syndrome, Nerve pain, Postural Orthastic Tachycardia Syndrome, POTS, Scoliosis, Spoonie
Real Life Stories | TinaMiller | May 22, 2016 4:26 pm | Comments (1)
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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A 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
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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