Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome

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 »

The Story of Me (In verse).

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 »

Get The Word Out Wednesday-Week 2-2014

Welcome to our second Get The Word Out Wednesday Link-up.

Thank you to all those who linked up last week.

If you missed that post feel free to check it out here.

We will be hosting a “Get the Word Out Wednesday” Link-up EVERY  Wednesday for blogs featuring articles that will help those with chronic illness.

This linkup is not only for zebras but ANYONE with a chronic illness that has a personal story, help (allergen-free recipes, ideas), adaptation ideas, testimonial or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out”   link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, etc… and support each other during this sometimes lonely journey. Read more »

Living With A Chronic Illness- My Current Struggle

Living With A Chronic Illness- My Current Struggle

For you regular readers, you know this post is supposed to be about easy, low-cost handmade gifts.

I promise that post is coming (tomorrow) I hope.  I know that many of you with a chronic illness or physical challenges understand that what you want to do and what you can accomplish are two entirely different things.

For those of you who do not struggle just to accomplish a task as simple as combing your hair, I pray you never have to.

Since writing is what I seem to do all the time now, I have decided the best way to deal with my current battle is to get it out there, and posting it on my Facebook page just stirs a whole pot I don’t want to mess with.

This post is a vent.

If you want “perfume and roses” I suggest you skip this post. Read more »

Get The Word Out Wednesday-Week 1

Welcome to our first Get The Word Out Wednesday Link-up.

We will be hosting a “Get the Word Out Wednesday” Link-up EVERY  Wednesday for blogs featuring articles that will help those with chronic illness.

This linkup is not only for zebras but ANYONE with a chronic illness that has a personal story, help (allergen-free recipes, ideas), adaptation ideas, testimoniasl or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out”   link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, etc… and support each other during this sometimes lonely journey.

Read more »

How To Help Your EDS Child At Home (Part-6)

How To Help Your EDS Child (Part 6)

These are just a few ideas to help make schoolwork a little less painful at home.

If you have any other ideas or suggestions please leave them in the comment section below or e-mail them to TheZippyZebra@outlook.com. Read more »

My Top 10 “SpoonSavers” from The Pampered Chef

My Top Ten Spoonsavers From The Pampered Chef

Read more »