10 Things Guaranteed to Cure Whatever Ails You

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As someone with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, asthma, acid reflux disease, eczema, etc, I've heard it all.  On top of that, all four of my kids have Ehlers Danlos Syndrome as well, and three of them also have asthma and eczema.  My youngest son, Davy, had to have a feeding tube until he was 18 months old due to the severity of his issues.

With all that, there's no shortage of unsolicited advice and cures.

"You only have your disease because you've 'claimed' it."

"You'd feel better if you would exercise more and eat better."

"Your *insert condition here* could be cured if you tried this supplement."

"Your EDS was caused by vaccinations."

Thanks to all the helpful advice I've received, I was able to put together a list of things that will cure any problem you have.  You're welcome.

50+ Books for Special Needs Kids: The Ultimate List

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If your child has special needs of any kind, reading them a book about another child with similar issues can make them feel less alone.  

When I got my kids a copy of "Special Like Me" which is a book about a boy with Ehlers Danlos Syndrome just like they have, they were pretty excited.  I even took it to the school and read it to each of my two oldest kids' classes.

For children with special needs of any kind, reading them a book about another child with similar issues can make them feel less alone.  

Books that focus on special needs of any kind are not just a great idea for the kids who have them, but for their peers, family, and anyone else who could benefit from learning more about the condition (hint: that would be everyone).

With that in mind, I spent several days researching and compiling this list of children's books about various special needs and disabilities.  I hope you find a book that works for your family!   

My POTS Story: How an EDS Diagnosis Led to POTS

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I remember sitting in the shade as a kid while my siblings ran around and played in the sunshine.  I had no interest in joining them because the sunlight made me feel "funny."  I didn't know it at the time, but it was the first symptom of Postural Orthostatic Tachycardia Syndrome or POTS.

Since I was a teenager, I've had chest pains.  They're sudden and sharp, and they feel like I'm being stabbed in the heart.  After mentioning it to my doctor, she ordered an echocardiogram and an EKG, both of which came back normal so I wrote it off as me being weird again.

When I was 18, I went to a two day Christian music festival and camped in a tent with some of my friends.  It was hot and sunny the whole time, and I was absolutely miserable.  I ended up sleeping in the tent most of the time, so dizzy and nauseous that I could barely stand.  When I was able to get out and listen to some of the concerts, the sun was so bright that I couldn't see and I got a headache from squinting so hard.  I thought I'd be fine when we got home, but a few weeks later, I was still so fatigued that I couldn't keep my eyes open and not feeling well at all.  I went to the doctor who diagnosed me with a severe chronic magnesium deficiency.    

See the whole "POTS Warrior" collection in the Sunshine and Spoons Shop

I have never fainted, but I've always had issues with being dizzy and lightheaded.  I black out easily and it usually takes me a minute to feel okay again after I stand up.

Special Needs and Chronic Illness Medical Binder Printable

When Davy was in the thick of his medical complexities, I put together a binder full of information and notes that I took with me to every appointment.  I used the binder to track Davy's symptoms, log his meds and hospitalizations, record questions for upcoming appointments, and more.  It was pretty basic...loose notebook paper shoved in plastic sheet protectors and held together in a 3 ring binder.  Nothing fancy, but it helped me stay organized and on top of Davy's care needs, especially when we switched health care providers.

Then, last year, Davy along with two of his siblings and I, were all diagnosed with Ehlers Danlos Syndrome. 

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.

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

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.

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! 

Victory Junction: Where Kids with Medical Needs Can Be Kids

I was compensated for this post.  All opinions formed are mine. I don't recommend products, companies, etc to my readers unless it's something I truly believe in.

I think we can all agree that every child deserves the chance to be a kid and enjoy life.  That's why we have child labor laws, why toy companies flourish, and why so many parenting books have sections or chapters on letting kids play.

But for kids with chronic medical conditions or serious illnesses who spend much of their time at doctors' offices, therapies, and in the hospital, they don't get many opportunities to be a regular kid. They often feel isolated from their peers and lonely. 

That's where Victory Junction comes in.

Victory Junction is a camp located in Randleman, North Carolina and is open to kids between the ages of six and 16 at no cost to the campers or their families.  It provides the chance for chronically or seriously ill children to take a break and just be a kid while in a safe and medically-sound environment.  Their belief statement says it all:

What Is Ehlers Danlos Syndrome?

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You may also like Could I have Ehlers Danlos Syndrome?

Unless you've been diagnosed with it or know someone who has, you probably haven't heard of Ehlers Danlos Syndrome.  Among those who have heard of it, many don't actually know what it is.

Ehlers Danlos Syndrome (pronounced ay-lers dan-lohse) is a collection of genetic connective tissue disorders.  It affects the body's collagen which can lead to symptoms in every part of the body.  Collagen is the glue that holds the body together and when it's faulty, the body can literally fall apart.  Collagen can be found in the skin, eyes, muscles, ligaments, blood vessels, organs, gums, etc. which means that all of those systems can have issues due to EDS.

#BesidesMyDiagnosis

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#BesidesMyDiagnosis is the brainchild of Vanessa from The Girl with Five Lads.  She created it to help those of us with chronic illnesses remember that there's more to us than our disease.  You can find more info on this project here.  You don't have to have a blog to join in-just tweet about yourself outside of your illness using the hashtag #besidesmydiagnosis.

You can see all of the #besidesmydiagnosis blog posts here and check out the hashtag here on Twitter.

1. #besidesmydiagnosis the three things about my appearance that I love in the mirror?

I love my eyes because they're brown just like my dad's.  I've always been a bit of a Daddy's girl :)  I may hate my thick, frizzy, curly, blonde hair somedays, but overall, I like it.  I also love the fact that I recently lost 30+ pounds of baby weight!  I may not be skinny, but I feel good when I look in the mirror. 

The Life I Never Expected

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I've always had a deep respect and interest in special needs parents, but I never thought I would actually be one.  I've followed the stories of children who had to have feeding tubes, but I never thought I would one day be a tubie mama as well.  I've read countless books and blogs about people living with life-altering diseases, but I never thought several of my children and I would be diagnosed with Ehlers Danlos Syndrome, a degenerative, incurable genetic disease.

But here I am, living a life I never expected.

The Best and Worst News of My Life

My whole life, I thought I was the biggest wimp alive.  Until one day, when I was commiserating with my sister about how we have more aches and pains now that we're in our 30s. I explained how much pain  and fatigue I have each day, fully expecting her to say something along of the lines of "Yeah, me too!"

She didn't.  Instead, she looked at me and said, "Wow. I couldn't deal with that everyday."