Friday, October 28, 2016

You Know You Have Ehlers Danlos Syndrome When...

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Thank you for helping me keep this blog going!

You know you have Ehlers Danlos Syndrome when...

You Know You Have Ehlers Danlos Syndrome When...

---your joints go out more than you do.

---you snap, crackle, and pop just like your favorite breakfast cereal.

Monday, October 24, 2016

Meet Simeon - Spina Bifida Awareness

In honor of October being Spina Bifida Awareness month, I interviewed Mary Evelyn from What Do You Do, Dear? about her son, Simeon who was born with Spina Bifida.

I've followed Mary Evelyn's blog for several years now and love her honest, humorous style of writing.  She doesn't candy coat what it's like to have a child with special needs but somehow manages to bring out the beauty of it as well. 

In addition to raising her two awesome and completely adorable kids, Simeon and Franny, Mary Evelyn is a school librarian which sealed the deal as far as me being a devoted follower of her blog.  Librarians unite!  Sorry, I'm just keeping it non-fiction over here.

Without further ado (and my sincere apologies for rambling), here's Mary Evelyn!   


What condition does your child have?
  • Myelomeningocele, commonly known as Spina Bifida.

Thursday, October 20, 2016

The Versatility of Cereal Just Got Better



I'm a serial killer.

Wait a minute...spell-check, please!

I'm a cereal killer!

Yup, I LOVE cereal.  I could eat it for breakfast, lunch, supper, and snacks.  Actually, sometimes I do.

Wednesday, October 19, 2016

Meet AJ - Epidermolysis Bullosa

October is Epidermolysis Bullosa Awareness month!  In honor of that, I interviewed Barb, whose 8 year old son, AJ, was born with the disease.

What condition does your child have?
Recessive Dystrophic Epidermolysis Bullosa

What is Epidermolysis Bullosa?

How does it affect your child? How does it affect daily life?
It's a genetic condition that impacts the production of collagen. It causes his skin and internal membranes to be very fragile. He develops blisters and wounds very easily. Each day he soaks in a tub, and his bandages are removed. We lance the blisters, treat the open wounds and wrap with specialty bandages. A lot of time is spent treating his wounds. He is unable to eat much due to GI issues related to EB and is fed through a GJ tube. He vomits multiple times a day and this past year has been very hard on his eyes as well. He often has blisters in them. He is in a lot of pain and uses a power wheelchair to reduce damage to his body.

Monday, October 17, 2016

Introducing...


If you follow me on Facebook or Instagram, you may have seen my big announcement about my new shop.


And if I sounded very calm and nonchalant in that last sentence, I'm not.

Friday, October 7, 2016

10 Benefits of Having Ehlers Danlos Syndrome

10 Benefits of Having Ehlers Danlos Syndrome


I'm going to be honest.  Having Ehlers Danlos Syndrome stinks.  It's painful, it makes you sick, and it's just not fun.  But there are a few benefits to it if you look hard enough...

You just have to look really hard.  Really, really hard.

Disclaimer: Just because we can do the "party tricks" shown in the pictures does not mean that we should.  Katie and I only did them for a few seconds for the pictures.  If you have EDS, please don't try any of the following! 





Tuesday, October 4, 2016

What It's Like To Be In a Coma


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The last thing I remember is going to bed that night.

I was six years old and had been having an asthma flareup for the last week or so.  But what happened after I went to sleep was completely unexpected.

What It's Like To Be In a Coma

This next part is what I've been told.  I don't remember it at all even though I was conscious for part of it.  I found out later that young children sometimes block traumatic memories out which is what happened to me.

Saturday, October 1, 2016

Must Read Blog Roundup #2

Not only do I write a blog, but I love reading other blogs.  Sometimes I come across something that I really want to share with you guys so I decided to put together a round up of posts that I think you'll love too.  Enjoy!