He always said it best...

I found this on my computer the other day.  I was cleaning it out and stumbled upon a document that was basically a portfolio written by my late brother, Rafe.  His intro shook me to the core.  I have no words.  Honestly, he always said it best.  And we got four more wonderful years from him after he wrote this.  Love and miss him immensely.

In his own words:

"Lasciate ogne speranza, voi ch'entrate."
(Abandon all hope, ye who enter here.)
~ Dante Alighieri

A Journey to the Ending

        The greatest people in the world are those who achieve their dreams, in spite of them being entirely impossible. The saddest people in the world are those who give up. “Abandon all hope, ye who enter here.” The words Dante inscribed above the gates of hell seem to reflect the outlook on life held by all too many people. There was a time when I could not have summed up better how I felt about my future: “Abandon all hope.”
        I suffer from cystic fibrosis, diabetes, obsessive compulsive disorder and depression. I’ve never been the fastest or the strongest, and I’ve spent a good portion of my life sick with one thing or another. I’ve been in hospitals multiple times, and was once told by a doctor that I had only weeks to live.
        I had reason to be depressed. I still have reason to be depressed. I remember laying in the hospital bed, my mother on one side and my father on the other. The doctor came in and told us that I had two choices: I could stay in the hospital where they had constant observation and crash carts and I’d die in a few weeks, or I could go home and die somewhat sooner. My father thanked him for his candor and my mother began to cry. My father left shortly after. (I later found out it was so I wouldn’t see him cry. He didn’t want to scare me anymore.)
        But I was nineteen years old. Death was the farthest thing from my mind. I couldn’t die. I hadn’t even been published yet! Besides that, I’m a stubborn ass, and that doctor made my mother cry. If for no other reason than to spite him, I was going to live.
        “Mom,” I looked at her, “I’m not going to die.”
        That’s when God stepped in. In a series of miracles, including an insurance company giving the OK to pay for a condemned patient to be flown to another hospital in another state, I was transferred to the University of Colorado Hospital. I was introduced to the respiratory therapist, Robert, who said, quite simply, “Let me give it a shot.”
        I am not trying to discredit the wonderful doctors and nurses who took care of me for the next couple of months, all of them aided immeasurably in my recovery. However, Robert (I never knew his last name) was the one who decided I wasn’t a lost cause. He said he could make me well, and he did.
So what is this all about? Well, it’s something I’ve known for quite a while, but came to a fuller understanding of in this last semester. For all the reasons I have to be sad, for all the reasons I have to sit in a corner believing that the world is pain and pain is the world, for all the reason I have to quit, I have a thousand times more to get up again, to keep going, and to find a happy ending.
        That’s what it’s all about. I don’t share this story to gain pity. I share this story to spread hope. I’ve been through a lot in my life, and you—whoever you are—I’m sure you’ve been through a lot too. Let me make you a promise: I promise you, you’re destined for a happy ending. You just got to meet it half way.
        In this portfolio you will find several of my works, ranging from odes to depression and evil, to stories of aliens and past generations. You’ll find monsters, fear, forgiveness and hope. You’ll find trials and tears, and you’ll find lost people. But when it’s over, when it really matters, you’ll find a happy ending.
        Never give up hope.

November 5th...

"Do you know what tomorrow is? Two years since you got sick..." - Joe

        Two years ago today I almost passed away.  Even though my health before then wasn't great and I'd been on continuous supplemental oxygen for the previous two and a half years...  That was the day my life truly came tumbling down and our journey to health began.  I woke up feeling loopy and out of it.  I couldn't hardly breathe.  I was rushed to the ER with oxygen levels in the 50's.  I was intubated and put on a ventilator.  Almost our entire family (both my husband's and mine) showed up at the ER waiting room to sit with my husband and wait for news.  My husband fell into his mother's arms praying I wouldn't die.  I was practically incoherent, but I remember at one point asking, "Am I going to die?"

        I can't remember much from that day, honestly.  I was so oxygen deprived, I kept blacking out, and some of my memories are simply gone.  But I do remember being afraid.  I wasn't quite sure what was going on.  I felt so strange.  I remember moments, figures, but that's about it.  I didn't have any strength or control over my body.  I don't remember being awake, I don't remember falling asleep.  I remember only flashes of images from the following days, then the next thing I knew I was waking up in Kansas City eleven days later.
        I want to take this moment and say thank you.  Thank you to everyone who showed up at the ER that night.  Thank you to everyone who helped out in one way or another during those times of fear and trial.  Thank you for the support.  Thank you for the prayers.  We really needed it, we got it, and we are grateful.
        I have been inspired by our journey.  I have come to the decision to write a book about my experiences.  It will be my personal medical memoir.  I definitely need prayers while I write these last few years down on paper.  It will be difficult and it will take time.  Opening up those memories will take a lot of courage - especially remembering the passing of my brother, Raphael.  But I feel it is something I need to do.
        Please pray for me as I walk down memory lane.  I know I am only me... but I hope in some way to be able to help someone going through a similar situation.  I want to give courage and comfort.  I want to help CF people realize there is hope.  Dreams really can come true.  I am living a healthy life that I never thought possible.  And I know I am lucky.  Each day I thank God I am alive.  Each day I pray my health only continues to get better.  I work hard, I pray hard.
        On this second year anniversary from that day, I want to say an extra "I love you," to my husband Joe.  He is my rock and my best friend.  Without him, without his strength, I don't know if I could have made it.  Thank you for always being there for me, dearest.  I truly appreciate it.
        Dream a little dream, people... then let your heart soar.

Much love.
~Julia Jean

Mask Season!

"No, I'm not afraid of ebola... but I am afraid of the flu, so stop staring!" - me (good grief)

        Wearing a mask... seriously.  If you can imagine.  All the stares and sometimes the blunt questions.  "Are you afraid of ebola?"  Um, no.  "Allergies?!"  Um, no.  "Sick?"  Not currently.  Yes, I am avoiding germs.  I have a suppressed immune system.  Why?  Okay if you really want to know the whole story..... lung transplant, low immune system, being careful... blah blah blah...
        I don't really mind the questions too much, I guess.  I'd much rather you ask than just stare.  But honestly it's the stares that get me.  Do I really look that weird?!  And I'm not talking about a quick glance in my direction, but like a gawking stare that feels like it never ends.  Like as they walk by the eye contact does not leave and their head turns slowly as they pass away into the distance.
        Is it that big a deal that you have to gaze at me constantly from across the room or as you walk by, turning your head so you don't lose your line of vision on me?  Really??!  Have you ever heard of common courtesy?!  Or just simply being polite?
        Okay.  I know I'm venting.  And maybe it shouldn't bother me.  And I am working on "not caring."  I know those who know me know my story and understand.  And really that's all that matters.  I know that.  And when children stare it makes me laugh (maybe a lil uncomfortable, but only a little).  I usually just smile and wink at them which makes them smile back and they move along like nothing is weird at all.  But when adults stare it kinda pisses me off.  C'mon, man, really?!
        I guess I shouldn't blame them.  I mean I am a young, healthy looking person wearing a mask.  Some might say I'm over cautious wearing masks and carrying sanitizer wherever I go.  But, ummm, it's flu season, people.  I have to be careful.  I don't necessarily like it, but it's a must.  I sometimes forget to put on the mask, but am trying to remember to be cautious - especially during winter.
        It takes a lot of courage actually.  A lot of stubbornness to not care and just do what I gotta do.  It does make me feel different and self conscious.  It makes me feel like I stick out like a sore thumb.  Just being honest here, dudes.
        Don't think it sounds that difficult?  Well, fine, do me a favor.  I challenge you.  Take a day ... and NOT a day you're just staying home doing nothing and going nowhere.  Pick a random day and wear a mask.  You can buy them at almost any local grocery market with a pharmacy section.  Just wear it.  See what happens.  See how you feel.
        Note the stares.  Note the questions.  You can tell them you were dared if it makes you feel better.  Or you could tell them you're simply avoiding germs... and just see what they ask next. ;)  They'll probably think you're a germaphobe.  Honestly.
        I understand if you can't take it to work for whatever reason, but otherwise just try it.  I guess it would kind of raise awareness for those of us who have to be extra careful.  And maybe a gentle reminder not to stare at those who look a little different.  So give it a try. ;)  Maybe then you'll have a better understanding of how important it is to protect those around you who are weaker than you from getting sick.  For some of us it can be detrimental to catch a bad cold or the flu.
        It's really not too difficult for you to have a safe winter.  It's not hard to be careful not to spread germs.  Cover your mouth/nose when you cough or sneeze.  Carry sanitizer and actually use it. Wash your hands thoroughly for 20 seconds with soap and warm water.  If you're sick stay away from people... especially the young, the old, and those on immune suppressants.  Wipe off shopping carts before and after you use them.  Just the basics, people.  Just be careful.  I know you can. :)
        I hope I haven't come off as angry.  I'm not.  Some days it does get to me, though.  I do want to be careful, but I want to be normal too.  It's an inner struggle and conflict each time I put on that mask.  Just hoping you take a moment to try to understand.

Much love,
~Julia Jean

p.s. And if you ACTUALLY do the dare... post a picture.  I'd love to see it! ;)  Though I'm guessing most people won't........

Sixty-Five Hours of Silence

"Silence is a true friend who never betrays." ~Confucius

        Shhh....................................   For CF awareness I am being mostly silent online for the next 65 hours.  Please help and re-post a message of silence for the awareness of this deadly disease.
        To join this event, go to https://www.facebook.com/events/1466933153590722/ on Facebook.  If you're interested in donating to the CF Foundation, please go to www.cff.org

Thank you and much love!

~Julia Jean

a simple reminder

        This will be a short post.  While doing research for the book I'm writing, I came upon this quote today while going through my blog.  I believe it is a good reminder to all of us.  It was December 23rd, 2012.  I was in the hospital at the time.  A respiratory therapist came in to give me my medications.  What he said both touched my heart and made me smile...

        "Here’s an old farmer’s saying… that I made up. 'There’s the way you dream your life will be, then there’s the way your life is.  Some people have all their dreams come true and are miserable.  Others get kicked down over and over and over again, and yet still smile.  It depends on what you do with what you got.  You have to decide to be happy however your life is.  Smile now; this is your life.'"

        Then he finished with, "God bless you for your positive attitude."  This simple reminder made my day.
        You never know how your words are going to affect someone.  Whether good or bad, your words will leave a mark on someone's heart.  Be kind and be gentle.  Say those sweet words you may be thinking in your head, but never say aloud.  Let others know how much you love them, appreciate them, and admire them.  Say what you need to say.
        I think we all need to remember his words.  No matter your situation, try and keep a smile on your face.

Much love,
~Julia

One and a half years...

"I've made it this far and I'm not giving up..." :)

(Several months old... but a cute picture!  Me and my Joe)

        Wow!  It's been forever since I've written a post.  I'm sorry.  I guess I just don't have much to update about.  Everything is going fine.  No news is good news, right?  Well, yesterday marked one and a half years post transplant for me.  I certainly am very blessed!  All my levels and numbers are doing great so far.  I'm not going to clinic as often as before, which is nice.  I'm exercising and loving it.  Though life always has it's ups and downs, in regards to my health I feel fine.

         A quick update... I had a bit of a scare recently when they thought my a1c (blood sugar levels) were very high, so I might have been developing diabetes.  However, it apparently was a mistake and my levels are actually doing okay.  But it did scare the shit out of me!  I felt it was sort of a wake-up call for me and I've decided to watch what I eat and exercise more aggressively.  Many CF people develop CF related diabetes.  I am told it's only a matter of time before all CF patients develop it... but I want to keep it at bay as long as I can if possible.

        Other than that, I'm maintaining a healthy weight, my pft's are slowly going up, and I'm living life like never before.  All I can say is I feel blessed.  So very blessed.  There have been many losses around me recently and it breaks my heart.  Life is so beautiful and so precious.  I wish we could all realize that.  Sometimes I look around at life and simply soak it all in.  All the beauty, the smells, the sights, the feel of the wind across my face...  Don't take it for granted.  It is so beautiful.

        In conclusion I want to share a poem I wrote a long time ago.  I might have posted it before, but it really states what I'm feeling right now...:

-This Life-

Life; a gift

a walk; a struggle

Everyone a story, a reason

to look back, go back, give up, give in

or to remain steadfast, forward, relentless

Take my hand; begin again

Don't close your eyes, you'll miss it

Don't take for granted; ambition

Don't run away; your dreams aren't over

Take this world and make it

Take my heart, don't break it

Gone; in a second it could change

This life; a gift

Don't waste it

Before it all fades...

~

         My love to you.

 ~Julia Jean

(One and a half years...)

The stomach saga...

"Ouch this hurts..." -me ;)

(waiting for the operation)

The stomach saga:

        So about two months ago the doctors removed my mic-key button from my stomach. A mic-key button is a feeding tube that is placed to put nutrition into your stomach to help you gain weight. I've had it for probably two years, but no longer need it. When they removed it it left a hole in my stomach that would presumably heal on its own. So I covered it with gauze and tape during the day and let it "air" during the night.  And it leaked and it leaked... Every time I'd eat or drink anything. Yes it was gross. It wasn't healing.

        So to KC we went and they went inside my stomach and clamped the hole shut saying "That should help it heal." And over a week went by and it leaked and it leaked...

        So back to KC we went.  They then cauterized it. That lasted about a day... then it started to leak yet again.

        So back to KC we went again.  And this time they sewed it up.  After several tries to get an IV in my port, off to surgery I went. They had to cut open my stomach (a small incision) and sewed the inside of my stomach up and then sewed the incision closed.

        I am hoping this time it'll stay closed and heal properly. However at this moment lying in bed I feel like I am recovering from a c-section (though I know that would feel ten times worse and have a much bigger incision).  I am so sore. I can't stand up straight and it hurts so bad to cough. I didn't realize how many stomach muscles we use to simply shift positions or move until now!

        I am grateful though this is finally done. Crossing my fingers I have no other issues with it. And I'm hoping the soreness and pain go away soon.  I am on a liquid diet for a week, so bring on the soup and shakes! Though I'm pretty sure the next few days my husband is going to make me lay in bed... I'm too stubborn to let that last too long. ;)

        On a lighter note, in the waiting room they make us double check our names on our arm bands... Well, this old man was asked to check his and he goes, "John Wayne. Yup. They got it right." Everyone laughed! Oh the little moments in life. Made me giggle. ;)

Much love.
~Julie Jean

P.s. Thank you to my mom and my Joe for taking me back and forth to KC so many times! Blessed. ♡

Spring is here!

"It is spring again. The earth is like a child that knows poems by heart." - Rainer Maria Rilke

(taken on my one year anniversary)

        Two days ago, March 18th, was my 1 year anniversary of my double lung transplant!  In so many ways, the year has flown by so fast!  I look back and I think, "Did we really get through all that?"  It's crazy!  However, we did and here we are now... doing wonderful and being blessed by God daily.  We are forever thankful.

(spending my lungiversary together enjoying the beautiful weather)

        This is going to be a short post.  I just wanted to say happy first day of spring!  May it bring you only joy, happiness, love, and beauty!  Happy Spring! <3

My love,
~Julie Jean

(Just love this picture.  About a year ago... being discharged from the hospital post transplant!)

Happy St. Patrick's Day!

"Top of the mornin' to ya!" ;)

        March 17th, 2013... I got "the call."  It was around 11:30 on that Sunday night that I got the call that there were a pair of lungs that were my match.  They were low risk; and they were ready for me if I decided I wanted them.  I, of course, said, "Yes."
        My husband and I had been waiting "on the list" for that call for just over a month... but we weren't prepared when it came.  We sat for a moment just holding each other, soaking in the reality of what was about to come.  Then after a few moments, we called our family members and let them know we would be on our way to the hospital.
        Wow!  A year has gone by so fast.  In many ways today and tomorrow are joyous days.  I have been given a second chance at life; and I won't waste it.  I truly feel lucky and blessed in so many ways; so overjoyed at the possibilities of life.  However, on the other hand, I know there is a family out there remembering the loss of their loved one a year ago.  It breaks my heart...
        Someone told me the other day, "It wasn't because of you that the person died; it was because of them that you lived..."  I hold on to that thought.  I pray for the family each day; and I am thankful for their love and generosity of donating these precious lungs.  I will never forget... I am blessed.
        Today, March 17th, 2014, I had my annual clinic visit.  It went well.  No, I did not reach my 100% goal... my lung function was 83%.  However, I feel one hundred percent better than I did a year ago!  And, for now, that's good enough.  I am working very hard to keep improving... and loving it.  The doctor said my CT scan looked "beautiful..."  So that was nice.  And other than that, it was a long day full of scans, labs, and more scans... I'm glad it's done.
        Today is a special day for me for sure.  One year ago my luck turned for the better... and I know I am so very lucky.  Thanks be to God, I arise today a happy and healthy lady.

"I arise today
through the strength of Heaven;
light of the sun,
splendor of fire,
speed of lightning,
switfness of the wind,
depth of the sea,
stability of the earth,
firmness of the rock.

I arise today
through God's strength to pilot me;
God's might to uphold me,
God's widsom to guide me,
God's eye to look before me,
God's ear to hear me,
God's word to speak for me,
God's hand to guard me,
God's way to lie before me,
God's shield to protect me,
God's hosts to save me.
Afar and anear,
alone or in a multitude.

Christ shield me today
against wounding
Christ with me, Christ before me, Christ behind me,
Christ in me, Christ beneath me, Christ above me,
Christ on my right, Christ on my left,
Christ when I lie down, Christ when I sit down,
Christ in the heart of everyone who thinks of me,
Christ in the mouth of everyone who speaks of me,
Christ in the eye that sees me,
Christ in the ear that hears me.

I arise today
through the mighty strength
of the Lord of creation..."

-St. Patrick prayer

        Count your blessings.

Much love,
~Julie Jean

(a picture I took one year ago tonight... right before transplant)

be my valentine

"There's nothing like real love. Nothing." - Shirley Temple

my Joe and I :)

        Just wanted to say happy Valentine's Day!  Even though today really is the feast day of St. Valentine, the world seems to celebrate it with sweet gestures of love for one another.  Here's an article about him: http://www.catholic.org/saints/saint.php?saint_id=159 Go read it!
        Honestly, some people absolutely hate Valentine's Day and others absolutely love it.  I like it!  Yes, maybe society has commercialized this day... but in my mind it's a simple reminder to say "I love you."  Is that so bad?  We should really say I love you every day! Well, regardless, it was a good day in this household. :)

        My gifts from Joe were flowers, a teddy bear, and a bag of candy! My gifts to Joe were a fancy dinner and this Chiefs' candle bottle. We also exchanged cards. It really was sweet. I love my dearest!
        Also, I LOVE this Valentine's song/video/lyrics!  Watch it:  https://www.youtube.com/watch?v=840NbiFF1zM
        That's all for now! I hope your day was beautiful. You are loved!

♡

~Julie Jean

Words, words, words...

"Poetry is when an emotion has found its thought and the thought has found words." - Robert Frost

        Just a poem I wrote last night and today.  These feelings and thoughts have been running through my head, so I put them down on paper.  Wanted to share.  Hope you like it! :)

-Believe-

Feel the feels

then let them go

Let them fly, let them flow

far into the fading sky;
beyond your reach

Let it teach you to feel

and believe time will heal

into the scar
you merely recall from afar

Live and learn

but do not dwell

upon the hell

of what "should've" or "could've"

It's over, it's gone, it's in the past

Try not to let this aching last

As your heart fell apart

the pieces scattered into the air

and now you don't give a care

You grew numb and you're "so done"

Just let it go, let it fly

far into the distant sky

I know it hurts; and I know it's hard

and you've put up that sturdy guard

Not all dreams do come true;

yet it's truly up to you

if those walls build and grow

or crumble and fall; just let them go

We all have to close that door

when all we wanted was so much more

Not everything is in our control, 

but that's life; it can cut like a butcher's knife

A moment that you treasured; 

a moment that you dread

and you feel your heart is beating
even though it's dead

A memory you visit from time to time

will slowly drift out of mind

You don't have to forget,
just don't live with regret

Let it flow, let it fly

and try to stop asking "why"

Let it be; let the pain bleed

But don't you dare give up, 

even if you feel you've "had enough"

I can't claim to understand completely;

every situation plays out uniquely

Though if you remember one thing today

know it won't always feel this way

There's so much beauty to behold

in each day as we grow old

Love this life; you've got one chance

Don't curse the storm;

dance.

♡

~Julia Jean

One year ago...

"And thus it ends,
Wonder forgotten,
A happiness left behind,
The statue broken,
So thus it ends.

Thus goes the sun,
Shadows come creeping
In the blackened sky, no stars,
I'm seeing water,
So thus it ends.

The mirror falls,
Crashing in the night,
Reflections show only fog,
And a smiling ghost,
So thus it ends.

A purring cat,
Midnight walks alone,
Dreams continue returning,
My hands are empty,
So thus it ends."

-Dwight C. Erthenwall (a.k.a. Raphael Biltz)

        One year ago today my heart was broken into a thousand pieces.  My brother Raphael passed away January 4th, 2013.  I found this poem on my computer that he had written under his pen name.  I do not know what he was thinking when he wrote it, but for me it is about a person simply letting go.  It speaks of the past being, just that, the past.  It is gone... it is beyond reach.  Everything ends.
        We all will have that moment where our bodies will break; we'll look back at the reflections of our life; our dreams will be sprinkled over our loved ones; our hands will be empty, for you can't take it with you; we will simply have to let go and let it end.  However, "A smiling ghost," makes me think that with the "end" there does not need to be only sorrow, but also joy and hope.
        My heart breaks for him.  I will always miss him.  I am still angry how it all turned out... I don't know if that feeling will ever fade away.  The words, "It's unfair" ring through my mind constantly.  Yet, I have to hold onto the belief that I will see him again and be able to hold him in my arms.  Everything ends in this world, but, then again, it is only the beginning...
        I don't know if this post made any sense, but it's just what I'm thinking and feeling right now.  I miss you, RafeBob... so much it hurts like nothing else.  You touched more lives that you ever knew.  So many people love and miss you.  Your memory will never be forgotten.  I love you.  Until we meet again...

Much love,
~Julie Jean

Holiday season is over...

"Always bear in mind that your own resolution to succeed is more important than any other." - Abraham Lincoln

(My cousin, my sisters, and I together on New Year's Eve!)

        The holiday season is over and a new year has begun.  Now what?  I guess it's time for new year's resolutions!  Yes, we all have them.  Yes, many times they are unrealistic and we stop doing them within a month.  However, this year I've really thought hard about what I would like to be sure to accomplish.  There are many things I want to do this year... I have dreams of traveling, learning new skills, pursuing my passions... I hope to be able to grow in friendships, give more, and forgive more.  But this list is a few simple things I know I need to work on to better myself.  Here's my list... yes, it's short, but it means a lot to me.

1)  Exercise.  I've written up a realistic routine and I am determined to stick to it.  I really want to get and keep these lungs in shape!
2)  Write.  I have been told by several people that I need to write a book.  So, I'm going to try.
3)  Relax.  I'm going to sit and look at the stars more. ;) I want to make a conscious effort to try not to worry as much.  I know this will be very very difficult... we'll see what happens. ;)
4)  Don't waste any day.  I know there will be ups and downs, but I am determined to have a fantastic year and appreciate every minute of it. :)
5) Be me.  I need to stop being so insecure and judgmental of myself.

        And that is all.  Everyone's list is different... and that is mine.  That is all for now.  Happy new year, everyone... make it a good one! <3

Much love,

~Julie Jean

p.s.   You know, I realized I hadn't posted anything about mine and Joe's little Christmas traditions.  So here you go... We put up our Christmas tree and wreath the day after Thanksgiving.  So while everyone else is out hustling and bustling on Black Friday, we were enjoying Christmas music and all the joy that Christmas brings. ;)  And after the holidays Joe took all the decorations down on New Years Day.  So, that's how we're going to do it from now on!  I like it.  Here's some pictures of our trees and our wreath.  We have a big tree and then a small Chiefs tree.  We buy a new Chiefs ornament each year! :)