One Woman’s Shares How Faith, Family & Fun Carry Her Through Her Days of Pain

This is a story. It‘s about me. A woman of faith with E.D.S. #3

This means that I am “bendy” and very seldom break. But I do often wonder “Just how much more can I take?”

I go to bed sore and wake up in pain. It doesn’t seem to matter in what position I have lain.

I can try pillows, blankets & braces or just do without. But I will still awake with a slipped joint. Of that, there’s NO doubt.

My joints slip and move in the blink of an eye, and sometimes those slips and slides just make me cry.

Because they hurt and I know I can just, “Put it back”, but each time I do, I feel like I crack.

Another piece broken, another part shattered. I stopped going to doctors because slipped joints seldom mattered.

There’s not much they can do once it’s reset, just give a you a new brace for when it happens next.

I am a young 42 with an unusual “disease”, and my daily prayer is to “Find answers. Please”.

Not for myself but for others who fight, who lay in their beds crying a night.

For just one day or a single night for of a bit of relief. To sleep or move painlessly in one day of peace.

Not worried each movement will cause a new pop, snap or crack. Not living in fear they can’t put it back.

I don’t question WHY I have EDS or how I got here. Because with my Savior I don’t live in fear.

I get up each morning and take time to pray “Dear Lord, please show me what I should do today.”

I can’t have a job or commit to most life because I NEVER know when this “disease” will slice, like a knife.

You see this “disease” doesn’t affect just me, it has affected my girls through their “heredity”.

My daughter often jokes, “Why did you share?” and I must admit, we make quite a pair.

Me in my braces and her in her chair. We go into places and people tend to stare.

Not because we are “challenged” but because we press on. DON’T tell us we “can’t do”-Cuz we will and have F-U-N.

We may not tackle a task in the time honored fashion…But we will do it OUR way with our tools and our passion.

Our braces might not be pretty, our wheelchair a drag, but that does NOT mean we have to look like a hag.

With beauty and grace we will wear our “Stripes” and spread awareness to others when they care to ask “Why?”

Because it isn’t my job to question our Lord but to ask Him each day “How best can I serve?”

He blessed me with an active mind, heart and soul and since I can’t use my body His words make me whole.

He knew when he formed me what steps I would take. He knew when he formed me what mistakes I might make.

He also knew what he was doing when he assigned me EDS. I like to think He asked “Who can handle this best?”

He saw me in His eye and said loudly, “Yes! She can handle this! She can take the stress.

She can carry this burden with me by her side. She can reach out to others when they lose their pride.

This “disease” can be tough but she can better. There’s nothing that will happen that WE cannot weather.”

I try not to see it as a punishment or curse. I try to remember it could be 100x worse.

I could be alone in this journey by so many unknown but through HIS grace we have computers and phones.

To reach out to doctors, family and friends, to talk to our “Dazzle” we just need to hit send.

Talking to my Savior is often all I need but spreading awareness is like planting a seed.

You listen to other’s problems, struggles and woes…then share your journey to help fight common foes

Like depression and worry that increase with pain. You share how YOU fight it AGAIN and AGAIN.

For I will not lie some days are truly rough, even for me an old veteran who’s tough.

But I know in the end “His will, will be done.” So I hop on the ride and say “Let’s Have FUN!!!”

So my girls and I giggle and poke fun at each other for bending and popping while bracing one another.

For who else do you know who can dislocate a thumb while closing a sling or opening some gum?

Yes, this “disease” affects every tiny part of our day but we REFUSE to allow it to keep us from play.

It might not be soccer or shopping for hours but we can still do a puzzle, write poems and pick flowers.

When you see us on Facebook being cheerful and kind, please remember you only see a piece of our mind.

The peace that God gives us in this time and place so we can share a kind word with a smile on our face.

The struggle is REAL. It does not have an end. No matter what, we will just always bend

To the left or the right, to the front or the back and until there is a cure we will keep sharing our hacks.

Because HE blessed us with an ability to “adapt” and gave us a sound minds to develop a new “hack”.

I will keep sharing our journey (the bad AND the good). If you will keep “fighting the good fight” (like YOU know YOU should).

Thank you for reading, I hope these word helped in some way to encourage or brighten your a small part of your day.

I am the author and editor of this blog and this IS my story. IF you want to read more about me, my blog or my family feel free to click here.

We love sharing how others win their daily battles and deal with their chronic illness.

If you have a story to share we would love to hear it whether it is your journey to diagnosis, how your deal with your pain or a recent encounter, we would love to share it for you.

For details and how and what to submit click here.

The author refers to “Stripes” and a “Dazzle” because E.D.S. (Ehlers Danlos Syndrome) patients are often referred to as zebras and a group of zebras is called a “dazzle”.

For more on why, click here.

This story is linked up at

Mommy Moments #200 @ The Life of Faith

Sharing Saturday #21 @ TreasuredTidbits

Monday Mommy Blog Hop

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