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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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 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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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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The Bird Family’s Journey With E.D.S.
My name is Carrie, I am a 32 year old single mom to 2 beautiful special needs children, who have a few genetic medical conditions I passed down to them.
I started having major pain in my body around age 10, then began having copious amounts of charley horses in my teen years.
I tore ligaments, and broken many bones then started passing out when I was 14 or 15 years old.
I was told nothing was wrong with me and “to keep pushing on”, so I did. I still played sports, even through all the excruciating pain, passing out and joint dislocations.
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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 | 
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I must apologize for disappearing again but my daughter had another of her episodes and then life got in the way again so I have let the posts here slide for a bit but we are back and ready to help you get psyched up for EDS Awareness Month in May!
Our last awareness post suggested keeping a jar and collecting change with the motto “Change For EDS” on a yearly, daily, weekly or monthly basis. You can learn more about that here.
Today we want to suggest something that reaches a MUCH wider group of people.
Tips on Creating Awareness Windows
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Guest post by Mysti Reutlinger
I Love God: A Devotional for Tweens and Teens
by Jaden Laster
contributions by Simon Gabriel
edited by Mysti Reutlinger
As I sat at the computer checking email one early December morning, Jaden walked up behind me and said, “Mom, I think I need to do something.” Panic set in as a parent living with and raising two children with Ehlers-Danlos Syndrome. I turned as my heart raced and said, “What do you need to do, son?” It was in that moment when his brown eyes sparkled with excitement not of this world. He explained he felt called to write a book with stories and Bible verses… it had to be Proverbs! As he spoke, my soul was filled with insatiable desire to help him bring this vision pressed upon his heart to reality.
I helped Jaden with a basic outline for his experiences, verses, reading, and questions. As he wrote out stories, I read through them and asked many questions of him to guide him in elaborating with more detail; together we refined each word he meticulously typed until his heart was overflowed with joy. After he finished every story, I set out to bring it all together as an active book; one where tweens and teens could write their responses to heart-provoking questions and journal each day. At the end of the process, all we could do was thank God for the opportunity to serve him today – and going forward.
I Love God Devotional is written for tweens and teens by Jaden Laster, age 11, of Scottsbluff, Nebraska. Instilled with a passion and purpose for living a God-focused life, Jaden openly admits to his own mistakes, the lessons learned with poor choices, and how to celebrate a God-filled joy by listening to the spirit within him. He’s candid, lighthearted, and serious about all the things that God makes beautiful.
We would love to hear your thoughts about the devotional and how you’ve followed (or not) God’s call in your own life and the results. We love to pray for others and welcome you to share your needs on the Facebook page (https://www.facebook.com/I-Love-God-Devotional-639931566150014/?fref=ts), follow us at http://ilovegoddevotional.com, or pick up a copy of the book at Amazon (or autographed copies via the website).
Purchase on amazon
Printed book – Kindle ebook
How people look at you if you are using a wheelchair without being paralyzed.
A personal story by Karina Sturm
With a chronic condition like Ehlers-Danlos Syndrome I am used to aids like bandages for all my joints and neck braces but usually I try to hide them as much as I can. I do not want to look sick.
But there are situations when you need to accept extra help, like at the airport after a 10 hour flight.
All my joints hurt and I had the worst brain fog ever. I had to book airport assistance and a wheelchair and I needed help with my luggage.
Last year it was the first time I had to use the wheelchair and I had no idea what this would mean to me. I am a very stubborn and proud person and had a hard time to accept that I am chronically ill with a huge possibility of getting worse.
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Hi! 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?
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Tags: Chronic Illness, Chronic Pain, Clumsiness, Dislocations, EDS, EDS Personal Story, Ehlers Danlos Syndrome, Hypermobility, My EDS Story, Positive Things About EDS, Subluxations
My Family's Personal Stories, Real Life Stories | TinaMiller | March 24, 2015 5:11 pm | Comments (1)
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