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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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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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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April is Autism Month
I would like to introduce you my son:
Nate, Our Blessing
Nate has Autism.
He was 10yrs old when we found out.
Yes, it changed our lives but it also made me look at the way I was parenting him and why sometimes he could not do some of the things I asked him to do.
There are still some things that I continue to work on but with our help he is now helping out around the house. He is taking trash out and helping with laundry. I know it is nothing big, but to us it is big. I ask him to please take out the trash and he does it. He might grumble but he does it.
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April is Autism Awareness Month
In honor of this we are sharing “Real Life Stories of Daily Life and People with Autism”
Jerik, “The Alphabet Soup Kid”
as written by his mother.
We call Jerik our “Alphabet Soup Kid”.
Aspergers (HFA) ADHD OCD SPD EFD
These are all letters that when strung together describe what his brain goes through on a daily basis. They are a part of him. He is incredibly funny and has a very quirky sense of humor.
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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
Note: This was written during a small breakdown tonight when I should have been doing other things so it may have been a bit rambly.
We are currently taking applications for a clone (of me).
Applicants must:
Be willing to stay up until ALL hours with teenage children while they are struggling with various health issues AND still function the following day to assist and drive other children where needed (personal health issues or not).
Be able to schedule and remember the details of a minimum of 5 phone calls to specialists, therapists, and doctors per week. WHILE scheduling appointments 6 months out and remembering when your spouse will be on nights or out of town for a week at a time AND what school schedules are so that a minimum number of days can be missed.
Be able to drop everything at a moment’s notice when doctors call to reschedule for an immediate visit.
Be able to rush to the ER at a moment’s notice AND have everything said child will need already in a bag (braces, meds, appropriate drinks and snacks, neck supports, electronics, phone numbers, chargers, etc…) AND everything prepared for other children to take care of themselves during said ER visit.
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