As I lay here, I have purposely kept the songs "Healer" and "Stronger" by Hillsong on repeat for nearly an hour now -- asking Jesus to invade my disheartened and hurt heart with his truth, helping me in my unbelief, and allowing me to feel once again the hope he so often imparts to my spirit. He reminded me of a picture he had given me years ago, and I can still see it as vividly now as I did then: 

It is darkness all around, except for a glimmer of light that barely illuminates a broken and crumpled body on the floor. It is me, and I am laying motionless. Unable to move, I have been beaten down from the years of battle with Cystic Fibrosis. It has left me weak and worn, and I am unconscious. Various hideous creatures lurk in the shadows, surrounding my lifeless body. They inch in closer, as death itself looks to deal the final blow. But someone stands in between me and the creatures. They cannot get any closer because Jesus himself is standing there, armed with a two-edged sword, staring them down with eyes of fire. He is like a roaring lion! He is my protector, guarding my broken body with a fierce tenacity as I have never seen. His  voice is as commanding as thunder, yet strangely calm and still... "She is MINE. And you will not touch her." As the minions then began to dissipate, he knelt down, scooped my broken body into his arms, and cradled me. 

As I reflect again on this image, I am reminded of where my hope comes from. My focus is not to be on what is seen, but on what is unseen. There is nothing I can do about CF, just as there is nothing I can do about how the course of government has progressed thus far. The healthcare projection now, and what it means for me does not look good... But as in the vision -- Jesus never has, nor will he EVER -- let the enemy destroy me. Never. I am my beloved's always :) And I need not fear, no matter the battle that lies ahead. 

"In spite of it all -- hope still lives. Friends, there is much joy to be found in the journey. And it is in those darkest hours -- the hours when we haven't even the muster to stand -- that we find that joy to be the greatest. And it is the greatest because it is incomprehensible. Inconceivable, joy. We cannot fathom where it is coming from. Though outwardly our bodies are frail, our speech is weak... inwardly we have risen to unspeakable heights. Soaring on strength which carries us like wings of eagles..."

Written on the spur of the moment for my newly launched website, www.littlegirlinchina.com. It amazes me what comes to my brain in the wee hours of the morning. Many of you will ask "What? A website? How did this come about?" And that's a story I'd love to tell you. It is beautiful. But it's a story for another day... For now, it's off to bed I go :-)

When you come back...

I don’t know how to follow you

Without losing my way

Jesus, come and take me by the hand

And I don’t know how to trust that you

Will do the things you say

Spirit, teach me how to understand

That your love can heal

The wreckage of my soul

The beauty of your light shining in me

I don’t know when you’ll take me home

To paradise with you

The day when I will finally be free

Oh, the day...

When you come back...for me

-JJ Heller

Alone.

Life is unfair. And when deep-seeded feelings of loneliness already exist in the heart… well that makes those unfair circumstances all the more difficult to bear.

I’ve just spent the past 20 minutes fuming -- sitting here wishing things had gone differently, as hot tears of frustration roll down my cheeks. I don’t bother to hide them, because frankly I don’t care.

As I think of who I can blame (and of course it’s the airline), I wonder why in the world I am so upset. For one thing, I spent the last 4 hours on a plane, anxiously awaiting the flight to end so that I could meet up with my best friend whom I haven’t seen for a year and a half. Finally -- we’ll be able to sit down and enjoy the next 6-hour flight together -- on our way to Kauai.

Finally -- we can become excited together as we head for vacation. Finally -- a friend to talk to!

Wrong.

Apparently when you don’t share the same name -- or aren’t at least swapping spit with your partner -- then it is perfectly fine to split you up and seat you in two completely different sections of the plane.

“I bought these tickets several months ago, and I specifically picked out our seats to be together.”

“Well so did I,” replied the woman who felt the need to defend her boyfriend (as he conveniently sat quietly in what was SUPPOSED to have been my best friend’s seat). She then added with emphasis, “We’re not moving, honey. These are OUR seats.”

I sat there in bewilderment as I pondered the thought. The airline finds it perfectly ok to move people around, switching seats on us at the last minute -- and then when they are asked to fix it, there seems to be “nothing they can do” because everyone around us are couples and no one wants to be split up.

As my friend texts me from the back of the plane “It’s ok”, I respond swiftly with a “No, it’s NOT ok! I’ve spent forever planning this trip, and I’ve worked really hard at it. I’ve been looking forward to this, and this isn’t right. I am SO pissed!”

So there I sat. Completely irritated, but it was more than that -- I was angry. And I was sad. Why was I becoming so emotional over THIS? It really wasn’t that big of a deal…

As the wheels left the runway and the plane began to soar over the city, I looked out the window. And then I began to cry even more. It had hit me. This “unfair circumstance” had hit a nerve. The city I was looking out over was Phoenix -- and down below were all my friends…my church…all of my favorite places I used to go. I was so close… and yet so far.

It has been nearly a year since I left, and not a day goes by that I still don’t think about it. I no longer have any friends, no favorite places to go… no niche to call my own anymore.

Suddenly I knew why I was so upset. It was the loneliness that was lashing out in me. After all this time without companionship, I had been looking so forward to having a good friend to talk to…

These couples had no idea. I’m sure they hadn’t been separated from THEIR significant other for the past year and a half. I’m sure THEY hadn’t been in a position where they hadn’t had friends for a whole year. I was the one who needed to be sitting with her travel companion more than THEY were. It simply wasn’t fair.

And that was just it. Life isn’t fair -- plain and simple. We’ve got to make the best of things and just deal when things don’t go our way. But the nerve that was hit sure wasn’t making it easy for me to do…

Little House on the Prairie (a.k.a., Moravian Falls)

To give you an idea of where I live, I thought I'd give you a tour in pictures...

The famous falls, of Moravian Falls

A few select spots in this one-horse town...

Betcha can't guess where THIS road leads...

See that sign in the distance?

Here's a closer look...

No, you're not reading it wrong

Yep, it says "Medical Center"

And look what's right across the street from this sign...

...this abandoned building

When searching for the Medical Center, if you pass this sign you know you've gone too far.

And here it is -- the "Medical Center" where I go to see my family doctor. I know... I couldn't believe it either!

A random sign alongside the road...

And what would a town be without the local market/gas station?

And finally... our neighborhood in the hills :)

Here's our cabin... at the end of a dead-end road

A Merry Heart Does Good Like Medicine

When I first moved here at Christmastime '09, my lungs were definitely not in the best of shape. The last couple of years in Phoenix were filled with increased tune-ups, and in May of 2008 I experienced a massive hemoptysis that lasted 10 full days. It had become increasingly difficult for me to take care of myself physically (finding time for treatments, getting enough rest), juggle a full-time job, and keep up with my regular church & life activities.

Tune-up: A term used in the cystic fibrosis community to refer to a preventive course of intravenous antibiotics and respiratory therapy. Depending on the doctor’s preference and the specific case of the individual with CF, a “tune-up” can last from 2 to 4 weeks.

Hemoptysis (hee-MOP-tih-sis):

The coughing or spitting up of blood from the respiratory tract.

Throughout 2009, my PFT's had seemed to steadily decrease, and my overall lung capacity/function had been fluctuating up and down between 55%-70%. After having two IV treatment periods of 3 weeks each -- once in September '09, then just two short months later in November -- my lung function had finally begun to level out at 60%. PFT's, or Pulminary Function Tests: A group of tests that measure how well a person's lungs are working, and can help determine disease progression by tracking changes in lung function over time.

Jaden likes to do his breathing machine too ;-)

My November tune-up was actually completed while making the 3-day move across the country. I was finishing out the last week of treatment while literally traveling with an IV pole, a cooler full of antibiotics, and a huge storage bin full of medical supplies. Each night as Dad and I would settle into a hotel room, I would hook up to the good 'ole IV pole, administer the dosage and let the meds do their thing :) In the morning, I would hook up again and complete my morning dose before we hit the road again...

My own personal pharmacy!

Ahh, my life-long friend, the IV pole :-)

************************************************************

Since arriving and settling in to my new home in North Carolina, a LOT has changed. Lifestyle changes, financial changes, emotional changes... all contributing to ONE BIG change: A CHANGE for the better in my PFT's. FINALLY!!!!

In order to understand my excitement, you need to have a basic grasp of the parameters that measure my lung function...

PFT's are measured by certain parameters, which are as follows:

FEV, or Forced Expiratory Volume:

The amount of air which can be forcibly exhaled from the lungs in the first second of a forced exhalation.

FVC, or Forced Vital Capacity:

The amount of air which can be forcibly exhaled from the lungs after taking the deepest breath possible.

The FEV and FVC readings put together are what make up my lung capacity percentage -- in other words, the 60% previously mentioned.

Here is an example of what my tests look like when I breathe into the machine. The graph measures my actual breath compared to what a person my age/weight/height with normal lungs should have. That is the predicted (represented by black line):

During the test I usually take as deep of a breath as I can, then blow it out as fast, hard and long as possible. Here's a sample picture of what it looks like:

On May 4th -- during my last check-up -- I received some of the greatest health news I'd gotten in a very LONG time...

My FEV (Forced Expiratory Volume) had gone from 60% to 76%!!! Not only that, but my FVC (Forced Vital Capacity) had gone from 74% to 100%!!!!!!!

Here's a glimpse of life during a tune-up...

Yes, life has definitely changed. The doctors described my last report as fantastic, ending with "So whatever you're doing, keep doing it." Wow. So what have I been doing??

First of all, after only ever seeing my family but once a year, suddenly I was surrounded by them 24/7, a luxury I'd not had for five years. Two little individuals in particular have contributed to my daily joy. Affectionately referred to as G & J, Gideon and Jaden have played an ENORMOUS part in my decision to leave Arizona and come here.

Recent footage of the boys during our last Florida trip:

Secondly, I finally tried what I had been on the fence about for years. I pushed through the mounds of paperwork... completing the intense process of applying for Social Security disability benefits... and GOT IT. This. Was. H U G E. It has not only given me much more free time to complete all my treatments and medication, but has also allowed time to give my body the REST it had needed for a very long time. And my stress level has gone down TREMENDOUSLY. I no longer have to worry about pushing my body full time in order to make ends meet. The financial stress has been taken away as I now live with my parents, so I am able to focus on finally paying off debt.

Gideon and I -- loving the ocean together :-)

And Thirdly, I found a new medical facility with a CF Center, and the doctors there prescribed something new for me. Something, in which I have found, has helped me immensely. Advair is a drug that focuses on diminishing the inflammation in the airways, thereby opening them up to allow better airflow for me. As far as the difference I feel in my breathing, it has literally been a breath of fresh air. For the first time in a LONG WHILE, I feel like doing things again. Doing things that I love -- like dancing and hiking -- that I didn't feel like doing for the past couple of years, simply because I felt so bad.

An X-Ray of a healthy person's lungs...

VS.

An X-Ray of someone with CF

(the cloudiness is the scarred lung tissue)

***********************************************************

September is rounding the corner, and so is another check-up. In a few weeks I'll know where my numbers lie, and am quite curious as to what they will be. Mostly though, I am still reveling in my last report and just trying to be thankful for the last 6 months. When it comes to breathing, they have literally been refreshing.

Now if only everything else could just fall in to place...

Boston

My head emerged out from the underground station. As my eyes drifted towards the skyline, I was sure my pupils must’ve tripled in size to take it all in. One would’ve thought I had never seen a city before, the way I was gushing. I was beaming from ear to ear, for there she was -- grandly standing before me in all her old world charm: BOSTON. She was an open book, ready for me to dive into her pages. Uncharted waters, just begging to be explored. My mouth gaped open in elation, and instantly she drew me in. Over the next couple of hours I walked block after block -- afraid to blink for fear I’d miss something. It was as if I’d stepped into another world. Energized with excitement, I suddenly felt something inside me spring back to life.

Boston deserves another round all its own; the 6-hour layover I devoted to exploring it certainly didn’t do it justice. No, it was the fact that I was back in the city -- a BIG city -- that got me so beside myself with glee. The city is invigorating. Exciting. Inviting. Life there is never dull, for there are endless opportunities. In the city an eclectic and enriching mix of music, languages, foods and cultures are at your fingertips -- all waiting to challenge the senses.

My mind was racing a mile a minute. “Ohh, I could SOOO live here.” There was just one problem with that statement. The problem is that I seem to utter this phrase just about any place I seem to place down my little happy-to-be-anywhere-but-here feet. It is this exact love (addiction is more like it) of travel -- the thrill of taking in new surroundings -- that is most undoubtedly the root cause to my conundrum of indecision.

That indecision haunted me as I walked through those streets of Boston. All I could think about was how much I loved it, how simply wonderful it would be if I could live there… and how equally I would love residing in so many other grand cities like it. Visions of bustling New York, of coastal California, of the southern charm of Charleston… filled my head.

Dreams of returning to school, of speaking Chinese, of becoming a travel writer, a prolific speaker, a talented musician… all attempts at finding a way for myself…

As I walked through those streets, I longed to be able to find it. To find my life. To find myself. To be near my family. To find a happy medium.

Yes indeed, Boston was beautiful. It was beautiful because it was Boston. It was beautiful because it was the city. And it was beautiful because it brought me back to a place I'd very much missed.