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