remembering Thanksgiving

I know this is late, but I'm just remembering it today and thought I would make a post.

(Thanksgiving meal, 2012)

    On Thanksgiving day, 2012, I sat by myself in a hospital room.  The lights were turned down low.  It was quiet other than the chattering of nurses out in the hallway.  It had been weeks since I had been able to take even one bite of solid food.  My throat was damaged and I couldn't swallow correctly.  However, that day I had finally passed the test to be able eat soft food.  It had taken weeks of daily exercises to get to that point.
    I sat with my legs dangling on the side of the bed.  I stared down at my dinner plate.  There were mashed potatoes, mashed stuffing, very soft turkey, mashed green bean salad, a roll, and then some soft desserts.  I turned my head and looked out the hospital window.  I felt so isolated.  It was night, so the lights of the city were aglow.  I thought about my family.  I thought about my brother and mother a few floors from me in the I.C.U.  I thought of all the happy families gathering together for Thanksgiving dinner at that very moment; the laughter and the joy they must be feeling.  Then I looked back down at my plate.
    It sounds like a depressing moment.  It was.  However, I knew my mother was probably feeling even more alone than me at that moment.  She was all by herself watching my brother as the machines that were hooked to him beeped and pounded away at his sleeping body.  I was so worried about him.  He was so sick.  I then thought of all the people who didn't have any family that holiday season.
    I made myself try and think positive and be thankful.  I at least knew I was loved.  And no matter how bland the meal looked, I could eat it.  That was progress.  I was thankful for that.  I made myself smile and then told myself, "Happy Thanksgiving."  Then proceeded to take bite after bite.
    I'm just simply remembering that moment.  It's been three years since that night.  I look back on it with sadness knowing what just a few short months later occurred.  I am grateful, however, for the experience of that night.  I learned to reach outside of what I was personally feeling and find something to be thankful for.  I have come so far since then.  I've had three healthy Thanksgivings since and they've all been surrounded by family.  I am thankful for that.

Much love,
~Julia Jean

"Was blind, but now I see..."

"I will extol the Lord at all times; His praise will always be on my lips."

(In the hospital this last visit...)

        June 21st, 2015.  That's a day that's now forever ingrained in my memory.  The day I was diagnosed with CF-related Diabetes.  Sigh.  Well, one doctor said, "If you have CF and live long enough, you're going to develop it."  So I guess it was just my time!  Sadly.
        In March, 2015, I had my three month checkup at my transplant clinic.  They took blood work and checked my A1c.  As usual, it was fine.  However, sometime between March and June something happened.  Slowly within those three months I began having symptoms.  Symptoms that I should've recognized.  I was extremely tired and exhausted.  My mouth was really dry and I was constantly thirsty, but no matter how much I drank it felt I was dying from thirst.  I felt sick.  I felt light headed.  My blood pressure was always high.  I was so nauseous, I could hardly eat.  I had completely and utterly lost my appetite.  And as a result of that, I lost 15 pounds!!  The weight just shed off of me very quickly.  Near the end of the three months, I couldn't walk straight.  I knew something was seriously wrong.
        I kept telling the doctors something was up.  I had clinic the following Monday, but I was fed up with worrying.  So I finally went into a local doctor Friday the 19th just to see if I could figure out what was going on.  They took lab.  Then I went home not expecting to hear anything until Monday.  Saturday morning I get a phone call from the nurse on-call.  When I answered she sighed in relief and said, "Oh, I'm so glad you answered the phone!  You need to go to the ER right now!  I got results back from your blood work... Your blood sugar was 892!"  I was in shock and was like, "What?  That has to be a mistake..."  She said they thought maybe it was a mistake, but to go in to get tested right away.  I began to become anxious thinking at any point I could just simply pass out if it really was that high.
        I called Joe and my mom.  My mom took me to the ER and Joe met up with us there...  (Hmmm, haven't we done this before...?  Ha!)  The nurse was already waiting for me because the on-call nurse had given her a heads up.  She was super kind and helped us all relax.  They took my blood and sent it to lab.  It felt like forever before the nurse finally checked on the lab results herself.  My blood sugar was 773.  The nurse went into action quickly... obviously surprised I was still coherent and able to talk in a normal conversation.
        Soon after I was rushed back into the ER.  The people in there were also astonished, "You should be in a coma!"  I was thinking, "Well, I'm not, so let's get the numbers down... okay?!"  Everyone was bustling about.  Honestly, everything was so rushed, I felt like I was in a bit of a haze.  Still completely coherent, but maybe in a bit of shock.
        My mom, dad, Joe, sisters Rachel and Maria were in the ER patient room with me.  Eventually they were all asked, but Joe, to leave the room.  I was given IV fluids for about an hour before they finally starting giving me insulin to lower the blood sugar.  My mother told me later that they have to do that to help thin the blood.  She said that if the blood sugars are over 600, your blood can become like syrup.  Geeze!!  My blood was like syrup?! Good grief.
        My sister Rachel told me later she thought it was hilarious that the doctors seemed so nervous to give me any sort of medication until they talked with ALL my doctors.  They were calling my local doctor, my Kansas City doctors, and my Dallas doctors.  I know I'm a complicated patient...
        Finally I was given a room and they slowly brought my sugars down over the course of five days in the hospital.  A few friends and family visited while I was there.  The doctors ran several tests and I was officially diagnosed the next morning.  The doctor came into my room Sunday morning and said, "Well, I have good news and I have bad.  Bad news, you have diabetes.  Good news, it's totally manageable!"  I actually happened to be alone when I was given the results.  The doctor was so very kind.  She had told me after that when she saw the results she felt bad to have to tell me.  So sweet of her to care so much.
        The night before I had been agonizing over the fact that I had probably developed diabetes.  It had always been a fear of mine.  I kept asking God, "Please, no, please no..."  But in that moment, I took the news well.  I said, "Okay," and knew that was just the way it was.  I would survive, as always.  I would keep fighting as always.
        I asked how this could happen... and so quickly!  Within a span of three months I went from great blood sugars to almost being in a coma!  I was told by one person that when someone develops diabetes without realizing it, this situation can happen.  Also, another person at the hospital told me they thought my pancreas just stopped producing insulin.  The diagnosis explains every single one of my symptoms.  I keep telling myself, I should've known.
        Sunday night I cried myself to sleep.  Instead of "Please no," I was asking God, "Why? Why??"  I felt angry.  I was angry that one of my worst fears had come true.  I felt overwhelmed with all I would have to learn and do just to keep my sugars stable.  I was overwhelmed with another huge weight to carry, and charts, and more logs, and more medicine to keep track of... it felt like another huge balancing act I was undertaking.  I was sad... so I cried.
        The next day came and the tasks ahead of me felt daunting.  Everyone that found out how high my sugars had been all exclaimed, "You should've been in a coma!!"  I know, I know...
        After I left the hospital, I lost my vision for over a week.  Thankfully I didn't go completely blind, but everything was extremely blurry.  And when it reached it's peak, I could barely see a thing.  To be honest, I hated it and it terrified me.  I counted the days to when I would be able to see again.  Everyone assured me it was completely normal and I would be able to see again soon.  And I did.  My vision is back and is fine.  "I was blind, but now I see."  :)
        Now, it's been several weeks.  My blood sugars are stabilizing and I'm starting to figure out this whole new world of diabetes.  I know it can be overwhelming at times, but I know I'll get through it.  It's not as horrible as I first thought it would be.  In fact one upside of having CF-related diabetes is I'm not on a strict diet... I can still eat as much as I need as long as I balance it out with my insulin!  And I know eventually everything will simply become routine.  Many CF people I know have diabetes and they're doing great... so I'll be fine.
        While I was still in the hospital, one nurse in particular made an impression on me.  My mom had mentioned how high my blood sugars had been.  The nurse, a petite Hispanic woman, looked straight into my eyes, pointed her finger, and firmly said, "You are blessed!" Then said it again for emphases, "You are blessed! You are blessed to even be sitting there talking to me right now.  You're lucky to be alive."  She wanted me to realize it; to know it.  I felt like saying, "I know, I know, I am thankful!"
        Really, though, her words hit me hard and it got me thinking.  The anger I had been feeling the night before started to fade.  I suddenly realized I shouldn't be angry at Him.  I shouldn't blame Him.  I should be thanking Him.  I was bound to develop diabetes eventually.  I have CF, it most likely was going to happen.  But He allowed me to live through yet another strange crisis.  I could've possibly had major complications, but I didn't.  I could've easily slipped into a coma, but I didn't.  I survived, caught the problem in time, and entirely while still awake and coherent.  He really does know what He's doing.  God is good.  That night I had fallen asleep not asking why or asking please; I was thinking, "Thank you..."
         However, I am done with these crisis emergency visits to the hospital... right, God?! ;)

Much love,
~Julia Jean

Four years ago I said "Yes"

"When  I saw you I fell in love, and you smiled because you knew."  - Shakespeare

(April 21, 2011)

        Four years ago I was on continuous supplemental oxygen.  I didn't know if I would ever get off.  I prayed each night that someday I would be released from the shackles of tubes and the ball & chain of oxygen tanks.  It was a hope that I was afraid to let go of.

    I was blessed to be dating a wonderful man who loved me no matter what.  He looked past the tubes, tanks, health problems, and stress and just loved me.  Well, four years ago today that man asked me to marry him.
        Everything seemed normal as we were getting out of the car from a late date.  It was just after midnight, so it was dark out and the street light shined down upon us with a blueish glow.  I was walking ahead of him ready to get inside my parent's house.  He was getting my extra tank out of the car, but quickly spoke up.  He stopped me on the sidewalk, under the tree by the edge of the street, by saying, "Julie, wait..."  I turned around.  He walked up to me, obviously nervous, and put down the tank.  I honestly remember the gentle breeze blowing around us in a few seconds of silence.  It was surreal; like a scene from a book.  We were standing face to face, oxygen tank humming, and our eyes locked on each other.  He took my hands in his and said, "I know I finally met the person that I want to take care of me; and I want to take care of you."  

        My heart melted.  Those words meant the world to me.  Because of my health so many people had taken care of me throughout my life and I wanted to feel that I was needed and able to take care of someone else.  I had expressed that to him before and he remembered.  So his words deeply touched my heart.  He then got down on one knee, pulled out a ring box, opened it, and asked, "Julie Jean, will you marry me?"  I couldn't believe it.  I thought he would be proposing soon, but I was still surprised.  I of course said, "Yes," and screamed a little bit in excitement.  We both smiled the biggest smiles.  He put the ring on me and I was in shock with how beautiful it was.  It was exactly what I hoped for - our birth stones with a beautiful diamond!  We then stood there in the dark just holding each other for a few moments.
        I was purposed to while on oxygen and was married while on oxygen.  And now we've been happily married for three beautiful years... and I'm off oxygen.  Gone with those shackles and chains!

        I just wanted to take a moment and relive this sweet memory.  It will always stand out for me.  It wasn't an elaborate or over the top proposal.  It was simple, intimate, and perfect.  I loved it that way.  A special moment shared between us.

        Thank you, dearest, for loving me no matter what.  I love you, Joe.

~Julia Jean

Happy to be alive :)

"That breath you just took... that's a gift."

    Happy!  Two years down and many more to come.  If you could take a moment and say a prayer for the donor's family, I'd appreciate it.  Thank you.  I keep them in my thoughts always.  And take a moment to watch my video :)

Love,
~Julie Jean

St. Patrick's Day :)

    Another year has gone by.  Wow!  Time flies.  Luck was definitely with me that day... that and a huge support group, lots of prayers, stubborn souls, and determination.  Two years ago today I got "the call."  I remember that moment clearly.  It was eleven o'clock at night and Joe and I were curled up on the couch of our Dallas apartment watching a movie.  Then the phone rang.  I had a feeling I knew who it was since it was so late.  My eyes widened when I saw on the phone it was the hospital.  It had only been a month since I was listed.  I looked at Joe and answered the phone.  There were lungs available.  They were young and they were very low risk.

    "Do you accept these lungs?"  "Yes."  My heart felt anxious and excited.  I was saddened that a life was lost, but overjoyed I was getting my second chance at life.  It's a very difficult emotion to explain.  Joe and I held each other, prayed, called our family, then headed to the hospital where my life would be changed forever.

    A day doesn't go by where I don't think about my donor and his/her family... whoever they are.  Because of their selfless gift I am alive and well.  I often stop and remind myself how lucky I truly am.  Someone gave me their lungs and I will not disappoint.  I want to make them proud.  I will live a full life for the both of us.  I won't ever take these lungs for granted and I won't stop trying and working hard.  May God be with that family today.  

    Yesterday I had my annual checkup.  My fvc was 101% and my fev1 was 93%.  So my lungs are doing really well!  I feel amazingly healthy.  Two years have gone by now... and I am looking forward to many more years to come!  I am so blessed.  I am lucky.  Thank you to my friends and family for always being there for me!  Happy St. Patrick's Day!

Much love,

~Julie Jean  

Happy Day!!!~!!

"Do not regret growing older.  It is a privilege denied to many."

     Made my husband take a few pictures with me... because it's my birthday!  Just wanted to post these two pictures from today!!  HAPPY DAY!!  Thirty years old!! Wow!!  Do I look more mature???  Ha! ;)

                                                     

     Feeling happy and silly!  That is all.  Muah!  Xoxo

~Julia Jean

Last Day Being 29 :)

"I survived because the fire inside me burned brighter than the fire around me."

     The first time, that I can remember, I almost died was when I was thirteen years old.  I had double lung pneumonia and was extremely ill and hospitalized.  I have a distinct memory of lying in my hospital bed scared out of my mind.  I looked up at my mother and asked her, "Am I going to die?"  And for the first time she had doubt in her eyes.  Hers response shook me to the core, "I don't know."  I'll never forget that moment.  There were tears in her eyes as she held me tight.  It was then that I felt it for the first time.  It was a burning feeling rushing through my entire body.  I knew my childhood was over.  In a mere matter of minutes, I grew up.  I realized it was up to me to do everything I possibly could to live.  It was then the thought ran through my head, "No.  I'm not going to die."  I fought and luckily I came back.
     Then when I was 16 years old, and doing quite well for a CFer, a doctor at clinic (I'll call him Dr. Doom) looked me straight in the eye and told me, "CF is a sinking ship.  Regardless that you're doing well now, eventually you're going to get sick, you'll go downhill, and you will die."  Seriously.  Those were his words.  I was shocked; speechless.  Who says that to a 16-year old?  Not even the slightest bit of hope for a future life.  He gave no reason to even try.  I mean, even if he thought that's how CF works, why say that to a young girl who is willing to work her ass off to be healthy?  In that moment of astonishment I thought, "Bullshit."  I felt that same fire build up inside me once again.  When my mother and I got back out to the car, I looked at her and said, "Never again."  And that was that.  We found other doctors.  I would not be treated by such a negative person who obviously didn't have hope in his patients anyway.

    Growing up with a chronic illness is difficult.  At some points in my life it was the "invisible disease" because I "Looked fine..."  Other times people would stare and wonder, "What's wrong with that girl?"  as I walked by with my oxygen tank and a canula across my face.  Life can be difficult.  We all have our crosses to carry, and Cystic Fibrosis is mine.  But life is also beautiful; and I want to live it as long as I can.
     When I was born I had to have surgery fairly quickly... it was amazing I survived infancy.  When I was a child my parents were told I probably wouldn't live to be a teenager.  Then when I was a teenager I was told I wouldn't live into my 20's.  Then I hit my 20's... mid 20's, late 20's.  To make it to 30 would seem like it'd be stretching it, right?  Well, I think eventually the doctors learned to just wait and see what happened next.

    Yes, I've had many ups and downs in life.  As you know, a few years ago my health did get seriously bad.  I was going downhill and the disease was catching up with me.  I was at a point where it was a struggle to even move.  There were moments I thought maybe Dr. Doom was right... but I wouldn't stop trying.  I wouldn't stop fighting.  I wouldn't give up.  It would have been easy to give in, but no I was going to beat the odds.  Now it has been almost two years since my life saving gift of a double lung transplant and here I am, alive and well.  Sometimes people tell me, "You're a miracle girl."  I know how things turned out for me is like a miracle...  And I am so thankful.
     It brings a smile to my face as I write this...  Tomorrow I turn 30!  :) :) :)  *AHHH!!!*  I made it!!!!  Another milestone that many thought I'd never reach!!!  In your face, CF!!  And what I really want to say is, "Suck it, Dr. Doom!"  HA!!
     I am so very lucky.  I don't know what the future holds, but I will continue to try and to fight.  I hope with all my heart these lungs stay strong and well.  I know I will do everything in my power to make sure they only continue to grow stronger and healthier.  I am proud of what I've accomplished these last 29 years.  My biggest accomplishment I'd say is... I survived.  I am alive!  There were twists and turns in the road that I did not expect, but here I am about to leave my 20's behind!  And I am more than happy to do so!!
     You can call it strength or you can call it denial.  Either way it's kept me alive through all these years.  I prefer to think of it as a strength; a stubbornness that has dwelt inside me all my life.  It's a burning desire to live; to never give up; no matter what the statistics said.  Basically I'm stubborn and don't like being told what I can or can't do.  And I believe I'll remain stubborn and happily grow older as each year passes.

     Now I turn to you just for a moment...  Whatever your struggle, whatever your cross... never stop trying; never stop fighting.  Don't you dare just simply give up.

     Happy birthday to me tomorrow!!!~!!

(This is my "I'm turning 30 tomorrow" face!)

Much love,
~Julie Jean

Two years.

"Good night, good night! Parting is such sweet sorrow, that I shall say goodbye till it be morrow..." - William Shakespeare

(Raphael: October 28th, 1989 - January 4th, 2013)

        You left a hole in our hearts that will never be filled.  It is something we will never "get over" and you are someone we can never forget.  You are gone and, sadly, that is that.  Yet, I hold onto the hope of seeing you once again; to be able to hug you once again.

        Keep us in your prayers as we keep you in ours.  I think of you daily.  I miss you.  Please, keep watch over me... you, side by side with God, see all the struggles.  

        Until we meet again, RafeBob.  Breathe easy.  I love you, brother.

~Julie Jean

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