We found each other, now we're going to find our health...

Our Introduction

Hi there! We're Dustin and Kyli. We are an over-the-top in love engaged couple in our twenties. We met last year, fell in love almost immediately, and ever since our life has been nothing short of unique.

In just one year, we moved 3 times, traveled back and forth to visit family, fell deeper and deeper in love, began planning our wedding, all the while juggling doctor's appointments, hospital visits, and fainting spells! 

Our life can be overwhelming at times, but it's quirky and it's fun and we couldn't be more grateful for it.

We certainly didn't expect to be chronically ill in our twenties; to be laying down in between trying on wedding gowns, to still have to rely on help from parents financially, to sometimes be too sick for a dinner date - 

but....

All we have to do is look at each other and we remember that without our health being so poor, we'd have never met. After all, we met on a support group trip.

We moved from the big, busy city of Jacksonville, Florida, where we met, to a small, quiet mountain town in North Carolina. 

We couldn't keep up with the fast pace of the city and our health suffered due to all of the stress there. We basically threw a dart at a map when we chose our new town. We took into consideration three things: weather (because we're both severely heat intolerant, ie: heat causes us to faint!), low traffic, and good healthcare. 

When we stumbled upon our town, we fell in love with it, and soon we were on a plane here, excited, nervous, and unsure of what the future held.

... and despite how difficult that plane ride ended up being (long story!) and how poor our health was coming here, it ended up being another match made in heaven.

We love it here!

A clean, new start in a town that we can physically keep up with - where the demands of every day life seem simpler, easier. A place where people walk by and say hello, a place where your neighbors reach out to you, and your doctors actually treat you like a person.

It seems like everything has fallen into place for us. 

Love, a new life, freedoms we haven't had in years....

Except there's one very important thing missing.

Our health.

We both share 2 conditions in common :

Ehlers Danlos Syndrome: a rare genetic connective tissue disorder that causes collagen to break down in the body.

Symptoms include extremely loose joints (which results in frequent subluxation and dislocation), fragile skin and blood vessels, a risk of internal rupture, etc.

Ehlers Danlos sometimes results in another condition, which we also both share, called Postural Orthostatic Tachycardia Syndrome.

Postural Orthostatic Tachycardia Syndrome: a form of dysautonomia, which means autonomic dysfunction. Results in blood pressure and heart rate swings upon standing or changing position (which results in fainting!).

Symptoms include: low blood pressure, tachycardia (fast heart rate), fainting, weakness, fatigue, tendency for dehydration, exercise intolerance, etc.

On top of those conditions, Dustin is an epileptic, has another rare condition called Chiari Malformation (which is often linked to Ehlers Danlos Syndrome), and has recently been thought to have gastroparesis, which in simple terms, means his stomach is not digesting food properly.

Kyli has Primary Ovarian Failure, which just means her ovaries failed at a very young age. In her case, there was no explanation for this. She has osteoporosis due to this. She was thought to have Celiac Disease and has been gluten-free for 2 years, but a recent doctor diagnosed her with Colitis, which may, instead, be the actual cause of her stomach issues.

Here's the thing though - 

All of these names, these titles.... sometimes we have to wonder, how much of it is just a label? 

How much of it can we change just by changing our diets and lifestyles?

We refuse to be held down by our illnesses, even though some days they incapacitate us. We also refuse to let our doctors discourage us or stop us from believing that we have the power to change our health for the better.

This blog will document our mission; which is to improve our health through any means that we have control of: diet, exercise, stress, etc.

We plan to completely change our lives and hopefully see wonderful results because of the changes we make.

In the next blog, we'll update you to let you know the changes we've already made. 


:)