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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Our Change is Making a Difference and Yours Can Too.
A year or so ago I began looking for simple ways to spread awareness and support EDS research without overwhelming myself or my family.
Simple ways that almost anyone could accomplish.
I am happy to say I came up with an entire list. Ideas I am going to begin sharing once a week here at The Zippy Zebra.
I hope to share them over the next few weeks so that when EDS Awareness month arrives we are taking it by force in EVERY community.
I also joined a group of ladies that are working hard to bring it all together on a specific website. Change For EDS.
Our family chose to begin simple.
We started by saving our change for EDS.
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I am so excited to share that I was recently chosen to be a part of the exclusive group to participate in sharing Jill Savage’s and Anne McClane’s New Book“Better Together-Because You Aren’t Meant to Mom Alone”before it is released. I have been asked to review and promote a few books in the past and while I was willing to share the book with others, I couldn’t bring myself to fully promote and share it’s content. THIS book is different. I could spend hours discussing just the three chapters I have read so far.
I must confess I am behind the majority of the team due to my family’s health complications but I absolutely love what I have read so far. I have even found myself re-reading many parts of it. I love it and many of the concepts she shares are spot on for any woman (not just mom’s) and that is why I am sharing it here, with you, on a chronic illness blog.
On page 20 of chapter one she discusses how “friends” can benefit not only your emotional but physical health as well.
Here is an excerpt from the book.
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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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Awaiting Diagnosis
Hi! My name is Rachel.
I am 14 and a freshman in high school.
I enjoy designing clothes, reading books, hanging out with friends and watching movies. I like creating stories and drawing.
I have been diagnosed with severe scoliosis, flat feet, severe vision issues, Ehlers Danlos Syndrome Type 3, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome.
I am currently awaiting gene testing results for Marfan Syndrome. Read more »
For further details on her illnesses, simply click on the highlighted words.
THE STORY OF ME
My name is Rachel.
This is the story of me.
My body is full of surprises, as you will soon see.
I have strange joints, not just elbows and knees
but ALL of my joints are really bendy.
Read more »
Tags: EDS, Ehlers Danlos Syndrome, MCAD, Overcoming, Poem, POTS, Rash, Reynauds, Teen, Teenager
Inspiration, My Family's Personal Stories, Real Life Stories | TinaMiller | 
February 21, 2015 9:21 pm | 
Comments (14)
Thank you for stopping by and please be sure to tell everyone you know (bloggers and readers) about the opportunity to spread the word.
It is has been another fun filled week here at The Zippy Zebra Household. I have been reaching out to more chronic illness communities in hopes to “Get the Word Out” asking them to share their “Real Life Stories” for our Tuesday and Thursday series. If you are interested in sharing your story please do so by emailing it to thezippyzebra@outlook.com or click here for more details on what we are looking for.
I have been speaking to some great women in the EDS community including a paranormal author Rebecca Howard-Patrick whose current series contains a protagonist with EDS. Her first book is available on Amazon at a discount right now Windwood Farm. Mysti Guymon-Reutlinger author of Journey to Health: A Holistic Approach to Ehlers Danlos Syndrome. And a model, still working despite her EDS complications. All have agreed to share their stories in our “Real Life Story” series and I can’t wait to begin sharing. I am not certain when these will be posted due to time constraints and deadlines everyone has but I have been promised they will share. I want to be honest and share in advance I have not had to opportunity to read either of the books above as I just discovered them recently BUT I have ordered both and can’t wait to begin the next time I have a little room to breathe.
If you or someone you know is an author, blogger, video person or has a story to share please send them our email and ask them to share with us. thezippyzebra@outlook.com
I also began a “Closed” facebook group for encouraging those of us who find it difficult to do the everyday things in life (dishes, getting out of bed, laundry, dinner), etc… Check the details out at “Celebrating Each Day, Each Project, Each Accomplishment at a time.” You can request to join here. It is to offer encouragement to each other as we make plans for the day and try to complete them.
We will be hosting a “Get the Word Out Wednesday” Link-up EVERY Wednesday for blogs featuring articles that will help those with a chronic illness. Read more »
Letter From An Overprotective Mom
To all you moms, teachers, nurses, school administrators, strangers, family and not so understanding friends, I write this for you.
YES, I am what society would deem an overprotective mom (and proud of it).
In our family I have to be “overprotective”, my children’s health and well-being depend on it.
You think that sounds overdramatic?
What would you do if your child had the life experience of any one of mine? Read more »
Reader Input Wanted
Yep, that is you!
Whether you are a first time reader or veteran Zippy Zebra friend we want to hear from you.
As I was working on the kitchen posts a discussion began about on-line shopping and delivery services available.
As the discussion spread it was pointed out that availability varies by location.
While, I know that I will not be able list EVERY available service I want to be able to list the main ones. Read more »
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