Happy Thanksgiving!

Happy Thanksgiving! I thought I'd take this time to write about some of the things I'm grateful for, at this very moment. :)

1. My incredible fiance ... 

He has somehow managed to light up every dark corner of my life. This year has been filled with so many tough and painful moments, but I got through them and as cliche as it sounds, I really don't think I could have done that without his support. I always hoped I'd meet someone who I deeply admired, more than anybody else in the world and here I am, engaged to a man who's heart, mind, and soul have left me wondering time and time again if maybe he's truly an angel... I wish I could clone him - if more people were like him, the world would suddenly find itself more beautiful. 

He has somehow managed to turn all of our yucky, sick moments into "dates". All of our scary, "What do we do?" moments have passed, because of his calm, reassuring presence.

And all of our amazing, over-the-moon, happy moments? They only happened because of his amazing spirit. 

I can't wait for this man to be my husband. I've said it a thousand times, but I cannot say it enough. So, so grateful for him.

2. My family

You learn quickly, when you're living in a brand new place, so far away from home, that family is irreplaceable. It's such a wonderful feeling when we go back to New Jersey, to find that even though it's been awhile, everything is still the same. There's a comfort in that, in family, that you can't find anywhere else.

I'm so grateful that even though, at times, it was hard to understand our willingness to hop on a plane and move so far away, they've supported us in our adventure here. My mom is always just a phone call away and I can't imagine not having her to vent to, laugh with, and share my life with.

I'm grateful that despite work, my dad is flying here tomorrow to spend time with us and help us. It means so, so much to us.

And for my brother, and the unique, fun relationship we have. We're so much alike and he understands things about me that very  few people do! 

And of course, my 3 lovely sisters and everybody else in my family, who love me for who I am and have since I was born.

3. Our home

We're both so homesick, and there's a part of me that will always feel that New Jersey is my home, but I am so grateful for our beautiful house here in our perfect, little town. Sure there have been moments where we doubted ourselves, wondered "What are we doing here?", but we've been so lucky to find a place that fits our personalities and health issues so well. 

A scenic, beautiful place where you can take a deep, clean breath and listen to the quiet sounds of nature around you - without car horns beeping, or faceless people rushing by you. Here, you run into people you know every single day (which at first, was odd!) and they say hello and smile. That's something that I will never take for granted. There's a sense of calm when you're out and about and even though you're so far away from family and friends, you don't ever feel totally alone.

In the Summer we complained about the gray days and of course, the humidity and heat, but Autumn has brought about such beauty and cool, perfect weather.

There are so many little quirky things that we enjoy here - the old-fashioned movie theater with one movie a night (which is somewhat annoying; like when you want to see the new Twilight movie and it's not playing until like a month from now and you're too sick/lazy to drive 45 minutes!), lots of antique and thrift stores (we just bought our wedding guest book at one!), and old bookstores too! 

4. My Ginley

A little over two years ago, I adopted my wonderful little Ginley. He's been such a happy part of my life and he's actually been the only constant thing in my life for these last two years!

So much has changed - moving to Jacksonville and then again, to be here, all of the traveling in between, and the one thing that always stayed the same was that my faithful little Ginley was always right there with me!

He seems to know when I'm not feeling well and is extra snuggly - like right now, looking at me with his worried, little black eyes. Love him! 

5. Our doctors here

It's so nice to finally have good medical care. To have a GP who actually calls you up after your appointment because she just wants to see if you're okay; who reassures you that things will get better. We gave her a book about Ehlers-Danlos Syndrome and she's actually reading it! She's so knowledgeable, but still wants to expand her knowledge and learn more about our conditions... what a relief.

Our chiropractor has gone out of his way for us time and time again, and I'm so hopeful about the enzyme therapy I've started with him. He has such a grasp on what we're going through, and I feel like we're really heading down the right path with his treatment plan.

6. The kindness of people

We've come across so many kind people here - our landlord, who is only just getting to know us, told us that if ever our car breaks down, we can use his. Who does that? He's been so wonderful to us.

We're constantly greeted by people in every store we go in, as though they've known us for years.

Even the EMT's have been exceptionally nice. After living in Jacksonville and having the meanest EMT's in the world (isn't that crazy), you come to appreciate things like that!

7. The little things

Cuddling with Dustin on sick days, watching The Office, laughing even though we're feeling yucky. Apples with cinnamon. Our backyard. Country music. The way the squirrels run across the wire outside our window (they're fun to watch on stuck-in-bed days), dragonflies, apple cider, my new boots that actually support my wobbly, EDS ankles!, my laptop, scenic drives, hand written letters....

Hope everyone has an amazing Thanksgiving and a year that brings a lot of gratitude and happiness! <3 

Cabin Fever

Just thought I'd write a quick blog -

because I'm bored... but also, proud! Because today is my 16th day on the diet and I haven't caved once!

Today was another blah day. We're both feeling very flu-like. We've been watching way too many episodes of The Office and I'm having nightmares about Dwight crashing our wedding. That's when you know you've watched too much TV!

I meant to do some yoga, clean the house, take the dog for a walk, cook some meals to freeze, and a bazillion other things, but instead I did a lot of nothing. Basically I've been living in the kitchen lately.

Our diets today:

Dustin

Breakfast: 2 hard boiled eggs 

1 banana

Grape gelatin

Lunch: Mahi Mahi

Dinner: Pork tenderloin

Cauliflower rice 

(simply cauliflower in the food processor & boiled...tastes just like rice!)

Squash 

Kyli

Breakfast: 2 hard boiled eggs

Grape gelatin

Lunch: Mahi Mahi with carrot sauce

Snack: Pear sauce

Dinner: Pork tenderloin and squash

Not too exciting, but it really is getting fun (I like a challenge!) coming up with a variety of ideas for each day. And my stomach is quickly improving so I'm not complaining!

Now all we need is some energy so we can get out of this house, because I'm getting cabin fever! AH! 

More tomorrow, + pictures! :)

Progress?

Just wanted to post some updates!

The truth is we are having a really rough week. We're not sure what's to blame - the sudden change of diet, detoxing from all of our old favorite foods, the aftermath of being in the hospital and the stress that comes with it, or just a random yucky week. Who knows. Sometimes there's no rhyme or reason!

We've been following the diet religiously all week. I could not be more proud of Dustin. Seriously... I don't know how he's doing it. Just weeks ago he was buying Moon Pies nonstop and eating lots of white bread! He amazes me. Love him.


(As I type this, he's sitting next to me eating some ground turkey... even though he was craving milk!)


Okay, so let me update you on both of us: 




Dustin's Updates

A lot of fatigue, weakness, dizziness, achiness


Continuing stomach issues


Lost a few pounds (that he did not need to lose!)




We're trying to stay on top of the weight loss (his, not mine.. I'm not minding mine so much!) by making sure he eats avocados, coconut oil, and bigger servings of everything.


Kyli's Updates

A lot of fatigue, weakness, dizziness, achiness


Lost 10 pounds
(It's weird, I had been wanting to lose it, but certainly not this way!)


... today we were both too weak to go grocery shopping, but we lucked out and found a store here delivers so we had them bring it to us! Sadly enough, just the trip down the street to the ATM exhausted me and I didn't even get out of the car! Driving was difficult, because I feel like I have the flu from hell.


My stomach issues are slowly improving! (I think!) After days of not being able to go to the bathroom whatsoever (omg, am I really blogging about pooping? Had you told me I'd be doing this back in high school, I would have laughed and called you a liar... god, life is strange!) - but yes, 


I'm finally going normally, as of today! This is a break-through considering that when I was admitted to the hospital, I wasn't able to go at all. Just blood. 


It was horrifying and life changing and I admit, I've been a bit neurotic this week about the diet, trying to research everything and do every step perfectly, because the last thing I want is to land back in the hospital with anemia. 


Don't hospitals make it impossible to heal? The torturous bright lights, the blank-faced doctors, the gross, nutritionless food, the sleepless, IV-beeping-all-night-long nights, the bed...


Dustin and I always insist on sleeping together in the tiny, cramped bed.


(I can't sleep without him.)




OK, here are some pictures I snapped today, so we can look back on this time and forever remember the beginning of our crazy, difficult SCD journey.

We said goodbye today to our ice creams (also Dustin's white bread, but who cares.. it's the ice cream that matters).

I always felt like if I had to forever abandon chocolate, I'd lose part of my soul and become a miserable brat, but I'm proud to say I have survived! 

Really... if it means being healthy, there's not a food out there I wouldn't eliminate. 

Look at what we had delivered from the grocery store!

We never expected them to bring such giant butternut squashes... we will definitely not run out! 

The only two things we drink (besides water) - watered down grape juice and apple cider!

We made SCD yogurt tonight! So exciting. This time we're going to take it easy though, because I think we ate too much too soon and the GOOD bacteria in the yogurt can kill off the bad bacteria in your gut too quickly which means your body gets flooded with toxins leaving you feeling... pretty much the way we're feeling now. Awful! 

Here's a link to the recipe:

SCD Yogurt

Here's what we ate today:

Dustin:

Breakfast: 2 fried eggs and a banana

Snack: Pureed pears

Lunch: Sirloin steak, pureed carrots, and an avocado 

Dinner: Sirloin steak 

(again... he was hungry! Good to see his appetite coming back!)

Snack: Ground Turkey (Lean)

Grape gelatin

Kyli:

Breakfast: 1 fried egg and a banana

Snack: Pureed Pears

Lunch: Ground turkey patty (nothing in it, just turkey)

Pureed carrots

Dinner: Ground turkey

Snack: Grape gelatin 

As you can see, our diet today was a little bit all over the place and redundant, but we were not feeling very creative. 

Here's what we ate yesterday:

Dustin:

Breakfast: Homemade chicken soup

Lunch: Chicken breast (with turmeric, and a little bit of honey, plus salt)

Snack: Avocado

Dinner: Tuna steak, zucchini & squash, spinach & scrambled eggs

Snack: Baked apples with cinnamon

Kyli:

Breakfast: 1 banana 

(I was nauseous.)

Lunch: Chicken breast (with turmeric) 

Dinner: Tuna steak, zucchini & squash

I'm proud of us! And it really hasn't been as difficult as I imagined. We're adjusting fairly well and we don't feel deprived... 

It'll just be nice when we start feeling better and can get out of this darn house! My untrustworthy stomach has me not wanting to be too far away for too long and I'm getting cabin fever.

It's hard being so far away from family sometimes, and we're also coming to terms with the depressing realization that we may not be healthy enough to go home to New Jersey for Christmas. All of the travel we've done this year, all of the moving, the stress - it's definitely taken a toll on our health and we know we need to be careful with our fragile bodies and allow ourselves time to heal... but it sure isn't easy at times.

But we know there's a brighter future ahead for us and we couldn't be more excited. 

One day at a time! 

Soon I'll write another blog about other steps we're taking to better health, aside from diet.

Hope everyone is well! 

First Change : Diet!

Where do we begin! Our lives have been so full of change this past year.

Let's start with our diets since that's probably the biggest change we've made, and the one we're most hopeful about!

Dustin's diet has drastically changed since we met. He went from eating Hot Pockets, frozen pot pies, and take-out to making homemade meals from scratch. It definitely didn't happen over night! There were many times when he was in the grocery store staring at the frozen food aisle longingly. 

(Dustin: 2010, pre-diet ...see my face in the background, I was secretly scheming up ways to get him to eat healthier!)

It was funny - he couldn't imagine eating any differently, eating healthier... and I couldn't imagine eating so unhealthy!

Well, that's not completely true. I did know what it felt like to have a diet like that - I grew up eating a lot of junk food. My mom didn't understand the importance of diet back then and we lived on sugary lemonades and fruit punches, Tasty Kakes, and pre-packaged pasta dinners.

I ate like that for a long time, until I turned 19 and started making an effort to stay on top of my Osteoporosis and cholesterol. Finding out my cholesterol was high at an early age was a definite motivator to eat healthier. Unfortunately though, I really didn't know how to eat healthy. I'd eaten that way for so long. I was still eating a lot of white bread, canned soups, and other products that contained a lot of artificial ingredients, including MSG, which I'd eventually realize I could not tolerate. 

A few years ago, I went to a holistic doctor who was a great influence on my diet. From there I started reading a lot online about food and suddenly it all made so much sense to me.

Food is not supposed to be manufactured or man-made. 

It's supposed to be from nature!

I was horrified to read about the chemicals and preservatives that were lurking in our foods. Even more than that, I was completely disgusted when I learned about the antibiotics and hormones used in our meats.

Here I was, as sick as ever with a ton of hormone imbalances, and I was eating this stuff?

I immediately cut out processed foods, which was harder than I thought. I've been eating this way for so long that I barely remember the grocery store trips where I'd have to look at every single label, trying to figure out what "fake" ingredients were in each product. I was especially on the look-out for MSG which I learned is usually disguised with other names like 'autolyzed yeast extract' (there's a whole list! google it!). 


Shortly after that I cut out gluten, after a test a GI doctor gave me showed high antibodies. I was never officially diagnosed with Celiac Disease, but I decided to go gluten-free either way and have been so for over two years now. There was no looking back! I never really feel like I'm missing out on much eating gluten-free. Sure, it can be complicated when you're at a restaurant or a friend's house, but I've learned that eating doesn't have to be the most important part of a social outing. And more than that I've decided that my health comes before any of that. Plus, I've gotten pretty good at figuring out gluten-free options no matter where I am! 

(Me; 2009, just beginning on my healthy diet journey! Yum! Kabobs!)

In the last year or so though, I've started to get off track again. Even though I stayed 100% gluten-free, I started to indulge in all of the gluten-free products I could find - Udi's bread, Betty Crocker gluten-free chocolate chip cookies (yum!), and a ton of rice. 


And now, after a recent bout of colitis (which resulted in a hospital stay and a dreaded colonoscopy), I've once again committed to an even healthier diet - 


The SCD Diet.


The Specific-Carbohydrate Diet is a diet created by Dr. Sidney V. Haas and made famous by author Elaine Gottschall. It's used primarily in conditions like Colitis and Crohn's Disease, but it's also proven beneficial for those with Autism and other disorders.

I read the book as soon as I got out of the hospital, and started making changes to my diet right away. Before I started on the diet, I was rushing back and forth to the bathroom (I felt like just putting a sleeping bag in there and not leaving!), sick and weak as ever. I was losing blood and quickly becoming anemic. I thought there was no end in sight. The stomach cramps I was having were bringing me to tears. I guess I just got tired of laying in the hospital bed feeling hopeless and so I dove into this diet headfirst, and wow, it's the best thing I've ever done!


Within a few days my stomach started to normalize and almost all of my issues were gone! I'm still having some pain here and there and I have a long way to go before my colon inflammation is gone, but I couldn't be more grateful for the progress I've already made.


The SCD diet is more than just a diet for the above mentioned conditions - it's a healthy diet, period. It's the way I should have been eating my whole life. Though, I really hope that with time I can transition into a raw diet, once my colon calms down. That would be even better!


Dustin started on the diet about two days ago and he's really having fun finding new food options.


OK - so here are the basics: 


-No gluten
-No grains
-No sugar (aside from natural sugars like fruit and honey)
-No additives/preservatives


Here's a  whole list with illegal and legal foods:
Illegal/Legal Foods

"The Specific Carbohydrate Diet™ is biologically correct because it is species appropriate. The allowed foods are mainly those that early man ate before agriculture began. The diet we evolved to eat over millions of years was predominantly one of meat, fish, eggs, vegetables, nuts, low-sugar fruits. Our modern diet including starches, grains, pasta, legumes, and breads has only been consumed for a mere 10,000 years. In the last hundred years the increase in complex sugars and chemical additives in the diet has led to a huge increase in health problems ranging from severe bowel disorders to obesity and brain function disorders. We have not adapted to eat this modern diet as there has not been enough time for natural selection to operate. It therefore makes sense to eat the diet we evolved with." - Elaine Gottschall 

To start off, all vegetables must be cooked well-done so they're easier to digest.


Click below to see the introduction diet that I'm currently following:


SCD Diet Beginner's Guide

So, just to give you guys an example, here was our diet yesterday:


Breakfast: Fried eggs and a banana
(Dustin is following the diet at a later stage, so he also had raw apples.)


Lunch: Chicken Soup


Dinner: Salmon with zucchinni and squash


(Dustin also had some other veggies.)


For a snack, we had the most amazing banana ice cream... 


Ingredients?


Just 2 frozen bananas in the food processor with a dash of cinnamon!


It was delicious!


Also, some homemade jello which we made with Welch's grape juice - no added sugar.

To make our life a little bit easier, we recently joined something called a CSA. Prior to living here, I didn't even know they existed! 

A CSA is a form of community supported agriculture. Basically you invest some money into your local farms  - here, we pay for a 20-week period where we'll be able to pick up a basket of produce every week right down the street from us. 

We're so excited about it! The basket will include fruit and veggies, whatever is available at the time, and now and then they'll even include eggs, oils, and flowers.

The CSA will help us to make better eating choices because no matter what we'll have a basket of healthy food waiting for us every single week. Plus it's locally farmed and organic. What could be better?

An organic meat CSA!

(We're joining that one too later on this year! Organic, locally farmed meat every week!) 

We're so excited about these big changes we've made to our diets. As I write this, Dustin's in the kitchen making zucchini pasta (which is just thin slices of zucchini cooked in some butter with salt). 

I bet he never thought he'd be doing that a year ago...lol...

We'll keep you posted on our diet progress and of course, include pictures and hopefully videos. And we'll update you soon on the other changes we're making, as well.

Here's to health and happiness!

-Kyli and Dustin

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. 


:)