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 :-)

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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)

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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.

The silent tears of change.

I feel like I'm going to scream.

You know the kind. The kind of scream that ignites a torrent of emotions; emotions that have thus far been lying dormant.

The kind that bleeds desperation, frustration... and heartache.

The kind that seems as if to be your only outlet.

I just want to scream. And have, plenty of times already... in my head.

Change is a strange dichotomy -- at least in my life I know this to be true.

There are those that hate change, and there are those that thrive on it. But what of us poor souls who always seem to be torn... finding ourselves amongst that middle ground? Loving change, yet sorely disliking it at the same time?? What are we to do? How are we to live...

The feeling as though you will explode at any moment. Not from excitement, but from being stretched. Stretched in a new atmosphere, new surroundings.

The silent tears that fall each night on your pillow. The ones that represent the close of a chapter in life. The loss of something once had, of friends once seen... but are no more.

These are the growing pains of transition... the evidence of being in the in-between. They are the battle scars in the process of change. Though not yet morphed into anything concrete, change has occurred. Is occurring. Will occur. We must endure these growing pains if we are to ever reach the other side.

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I never really got to say goodbye to Phoenix. I was too busy packing, too busy making preparations. I wish I could have made time for that moment. That moment to sit down and write. That moment to let everything pour out from my fingertips...

Instead I say goodbye to Phoenix every day.

I am literally going to scream.

My days are filled with hounding phone calls from the credit card companies, repeating the same old questions like a broken record. And my reply is always the same... I don't have any money. I don't have a job. I'm too sick to work. There are the calls from the insurance company, saying they can't cover my medications yet because they haven't received the go ahead from my previous employer. My previous employer claims they have already given the go ahead, and instead it is the insurance holding everything up. I lose my patience as I try to put an end to this vicious cycle and simply GET my medications.

I am drowning in paperwork. Endless paperwork. I'd rather stick myself in the chest with a needle than fill this stuff out. It is like pulling teeth... But I have to do it. If I am to get the aid I so desperately deserve, I MUST press on. Everything you've ever heard about the process of applying for Social Security disability -- everything you've heard and more -- is true. It is long, it is drawn out, it is grueling.

I have felt this scream a hundred times before. Like the time I began living on my own in China...and didn't think I could do it. Or like the time I graduated college and realized that the blissful stage between home and the real world was about to be over. The time I moved out west not knowing a soul...

And now. Now I've left those five beautiful, difficult, rewarding, heart-wrenching, healing and growth-filled years in Arizona all behind.

I miss my friends more than I can say. There are days when I just want to scream at the top of my lungs and pull all my hair out. Credit card bills. Phone calls. Paperwork. Paperwork. Paperwork. Ugh.

And YET...

There is an incredible peace. That feeling you have when you just know that everything will be alright. Comfort. A soft stillness within. The assurance that what you've done was right, and no amount of present pain can make you change your mind. It is indescribable -- a calm amongst the storm.

I came here for a new life. A life with family... and for a chance to breathe again, in more ways than one. The present peace outweighs the tears... making everything worth it. And though I know they will eventually come, my heart still longs for those days of the future to hasten... the days when my body can rest...when hopefully I'll get my disability...when I will have friends again...and can build a new life for myself.