In the moment.

"The beauty of a woman must be seen from in her eyes, because that is the doorway to her heart, the place where love resides." - Audrey Hepburn

~simple delight~

(me and my dearest)

        Sometimes I stop and realize... I am breathing without supplemental oxygen.  I'd gotten so used to wearing that canula on my nose and face for so long; for a second, sometimes, I feel for it - and it isn't there.  I find myself smiling at that fact... it opens a new door for me.  To feel confident; to feel pretty... it's something I haven't experienced in quite a while.  To dress up in pretty dresses, or cute outfits, wearing the funky clothes I love - without having to feel it was pointless because the only thing anyone would notice was the tubes and the oxygen... 

        Not that anyone who wears oxygen is not pretty... I'm just talking personally, I feel much more confident without tubes hanging off my face and without having to lug around a huge tank everywhere I go.  It was a small cross that now has been lifted - praise God.

        I remember the looks of  "I wonder what's wrong with her?" or just the blank faces of children (which always kind of made me laugh - because they'd look at me and then I'd smile and they'd smile and shy away ;)  I was stopped and asked by grown adults, "Why are you wearing oxygen? You're awfully young."  A part of me wanted to say, "None of your business," but the Christian side of me just stood there and, in a nutshell, explained my story.  I have even been stopped in shops or other random places (like antique stores or the grocery store) and was asked by total strangers if they could pray for me - hey the more prayers the better. ;)  One woman asked and then took my hand and prayed with me right then and there for several minutes.  I was taken back by those prayerful moments, but also touched by the kindness of their hearts.  

        Now, I still wear a mask and sometimes gloves out in public... but seriously, who cares?!  It's a step up for me... people may think I'm a freaked out of germs, but that's ok... I guess I kinda have to be. ;)  And now that I have my wig (yes - I finally got my wig because I have been losing my hair!) I feel even more confident.  And, you know, the wig is actually the EXACT hairstyle I've always wanted! Woot!

        In many ways, no matter how difficult it is to admit, I am grateful for the experience to be "the sick girl," the one with health problems, the girl people "notice" in the crowd - and not because she's drop dead gorgeous. ;)  It was humbling.  It made me view life on that side.  My CF used to be simpler (in this situation); it used to be the "invisible" disease... at first glance people didn't know I was sick.  If they got to know me, yeah, they'd figure it out. ;)  But not to people just walking about in public... until I went on oxygen; then everyone could tell something was wrong.  It made me feel ugly for a while; embarrassed... it made me wonder what my husband (then boyfriend/fiance/husband) saw in me.  It made me sad.  To be honest,  I hated it... and thought it was unfair.  At first I didn't want to go anywhere, because I was too embarrassed and thought I looked "weird."

        After a while, I did get used to it; grew a backbone; and just got over it... and decided to live life without caring what others thought.  I'd say it made me even more stubborn than I already was... When I got those "looks" I thought, "Who gives a shit..." and sometimes made a face back at them (in a funny way, not mean)... or just smiled at them until they realized what they were doing. ;)  When I was stopped by someone who wanted to pray; I was grateful... and  I prayed right along with them.  Yeah, sometimes it was embarrassing... but it was life; it was my situation; it was a complete stranger reaching out for me - and I should be touched; and I was.  Sometimes if I was just asked bluntly by someone what was wrong, I was tempted to make some random crazy story up just to be funny... but that's lying, so I never did. Ha! ;)  

        I was proposed to while on oxygen; I was married while on oxygen; I learned to be happy, even though I had to wear oxygen.  I had my gloomy days where I was fed up with it, yes, but in essence... it was life and just something I had to deal with.  And, though, I never thought it would happen... I don't have to deal with it anymore... that, in itself, is a miracle for me.

       I am grateful for the experience.  It has made me more sensitive and understanding of those in similar situations.  Whether in a wheelchair; wearing a mask and gloves; wearing oxygen; or whatever it is... we are still sensitive, loving, individuals... who don't want to be stared at but talked to, and not treated any differently than anyone else - we want to live life as normally as we can - and we do to the best of our ability.  And, like I said before, it made me a much more stubborn person; taking life as it comes... which I think it good.

        Even though that simple cross as been lifted - I never want to forget it.  It has taught me so much... I hope to always retain that sensitivity and that understanding - and be there for others who are going through the same thing.

        I know I should have always felt confident, even in times of struggle, but I'm just telling you how it is... how I felt.  And I know I'll still have my moments of low self-confidence, everyone does... but in essence, in the whole of it all, I feel I can be pretty again.  I hope that doesn't sound vain... more like I just feel blessed. ;) It blows me away that I am walking around (doing regular normal things) without supplemental oxygen; without running out of breath.  After two years; all I can say is "Thank You, Lord," for this chance at life... breathing with these precious lungs.  I shall treasure them as the gift they truly are... forever and ever.  Amen.

        This is a random post, I know... but it's what I am feeling right now - as I got ready for church; wearing a pretty dress, funky earrings, and my purple boots... the style I love - the style I think is fun... made me realize... I am happy; I am thankful for this simple delight.

Much love,

    ~Julie Jean

Three weeks: breathing more deeply

"No one leaves this world without scars..." - Fr. Bierschenk

(Three weeks! BAM!)

-three weeks-

        It's all those daily, random, tasks that I don't have to do anymore; that make me stop and say, "Thank You, Jesus." :) 

        Three weeks post transplant; one week discharged from hospital.  Today I went to my second clinic appointment since leaving the hospital - a long freaking day!  Were were at the clinic from seven o'clock in the morning to around two o'clock in the afternoon; I was stabbed in the chest THREE times while they were trying to access my port to draw my blood; I met an older guy who was wonderful, telling me "I promise, it'll get a lot easier!"  

        I also broke down and cried in front of the endocrinologist and the student with her... at the mention of Rafe.  It was at the end of the day; so I was really worn out... and it was rather embarrassing; but I couldn't control it.  I just broke... so unexpectedly.  We were talking  about diabetes and how Rafe had CFRD (CF related diabetes)  and I don't.  The doctor was surprised and said, "You don't have CFRD? That's very unusual... most CFers have it by your age. You're very lucky."  Then I mentioned my brother had it and she said, "Oh he has it?"  I said, "No. He had it. He passed away in January..."  and I broke.  I started bawling and couldn't stop.  It only lasted a few minutes and the ladies were extra sweet telling me, "It's okay. Totally understandable..." They cried some too, then gave me tissues. Sigh.  I guess it does come in huge, unexpected, crashing waves of emotion and tears... I miss him so much. <3

(Old picture - Rafe & me: makes me smile)

        ...Simply, this past week has been hectic. I've met multiple times with the lung transplant doctors, the ear nose & throat doctor, the endocrinologist, diabetes consultants, my caseworker, nurses, the nutritionist, the throat therapists, and so on.  So far my blood work looks good; my x-rays looks great; the scars are healing properly; the pain is still pretty bad, but more tolerable.  At night it's something like this: Pain medications before bed means weird ass dreams & no pain medications before bed means lots of pain in the morning!  Sigh.  Other than that, I haven't needed them as much during the day... so that's good :)  It'll pass; it just takes time.

(Me and Joe & my lung transplant doctor...)

        

        Oh, by the way - I finally passed my swallow test last Thursday, April 4th!!! So am able to eat again! So happy!!  My therapists and I cried. ;) After three weeks, I will nEvEr take food for granted again!!!!  Praise God for that! :)

(My throat therapists on I the day I passed the test!)

      

        So I still have a hoarse voice.  Though  the throat doctor doesn't seem too concerned.  It comes and it goes - better at some points of the day than others.  The doctor is giving me a few more weeks to see if there's any improvement at all.  If no improvement we might have to do a nerve test in my throat - which includes sticking a needle into the front of my throat and keeping it there for several minutes!!! AH!  He said we'd be able to tell for sUrE if the vocal chord is paralyzed and permanently damaged, or not.  He is nice and so if we can avoid that - if my throat improves on it's own (or with the small injection shots) - he wants to try ... and that's a good thing ;)  Crossing my fingers it all works out... but even if my vocal chord is paralyzed, he said they can move it to a place where the throat does close completely and I can possibly have my full voice back.  Crossing fingers again. ;)
        Oh, and since my voice was damaged - whether temporary or not - my laugh is gone!  If you know me, you know I have a loud laugh!  Now, it's just air!  I miss it!!  I hope it comes back...

(I just like this picture... :)

        My physical therapy officially starts Thursday, April 10th...it'll be for one hour and three times a week.  However, I've already started my own exercises; which includes LOTS of walking!  Seriously my legs have got a ways to go before it can catch up with my new lungs.  For example - the other day during my first clinic visit I walked to and from the car to the building,  from there to the lab, to the different doctor offices... back outside, from one end up a parking lot to the other ... uphill.  Then after we got back to the apartments, I walked up our three flights of stairs - just to prove my husband I could. ;)  And  I did!  I have never breathed so deep in my entire life.  At one point Joe was like, "Are you short of breath?"  I said, "No... I my lungs are fine!  It's my legs that are killing me!"   Each day the pain in my legs seem to get worse - especially my right leg.  I'm thinking I'm putting more pressure on my right leg... anyway, I'm trying to take it a little easy this evening.  Don't want to overdo it.  But I hope I'm ready for Thursday - I'm both excited and nervous!  I know it's going to hurt... they warned me, "Take your pain meds before rehab!"

(my new shoes for rehab)

        

        Mercy Sunday, April 7th, I went to Mass for the first time in months.  I was so excited; it was beautiful. The music was gorgeous, the church was wonderful, the priest was kind.  I felt so happy and alive during mass.  The sermon touched our hearts in a very unique way.  It felt like God was speaking directly to us.  It was all about suffering and God's mercy.  Whether emotionally or physically, we all receive scars in the suffering of our lives; and how our Lord offered His pain for us.  He talked about having faith in God; trusting him; offering up our pain and sorrows - believe in the mercy of Christ; regardless the difficulties we face.  It was beautiful; touched me deeply.  "No one leaves this world without scars..."  I sure got mine.  ;)

        

(me and Joe after church)

        On a side note: My sister, Teesa, and  her family came to visit this past weekend - and we had a wonderful time.  I love them so.  Also, my mum went back home with them after staying with me since my surgery.  I miss  her so much! I am so glad she was with us this whole time!  I know we all hated saying goodbye (for now) but she was ready to get back to dad and my baby sister - and Joe and I are ready to continue our adventure with just us together. ;)

        Mum, thank you... thank you for everything.  You are a blessing to all of our lives.  I love you more than you know; more than words can express.  I am grateful to you in so many ways... I promise to always be there for you too.  And  like I said before, I promise to keep working hard.  I want to make you all proud... you, daddy, Rafe, Joe, and the rest of the family. Muah!  :)

(I love you.)

        Living life without supplemental oxygen; with the freedom to go wherever we want, whenever we want - without lugging huge tanks around... it's been so long, and I'm loving it. :)

Much love,

        ~Julie Jean <3

p.s. Today's inspiration:

        "Life's the canvas and we're the painter; we're not doing anybody any favors by waiting for the art to create itself.  I know you're scared and so am I - Yeah we might fall but we might fly.  All I know is we'll never know unless we try... So we'll try until we run out of things to try."

        Thank you, babylove. <3

It's a beautiful life...

"A new day; I was waiting for so long for a miracle to come. Everyone told me to be strong; hold on and don't shed a tear. Through the darkness and good times; I knew I'd make it through..." 

-and thus it begins-

 (Oh, yes, we did!)

        Second day of April; we did it - we've left the hospital after fifteen long days.  I've been discharged from the hospital; and we're back in our apartments; our home away from home. I am so happy, I cannot describe.  I am so blessed that my mum and my husband stayed by my side these last few weeks.  I am so lucky to have had a good recovery thus far.  I am so very grateful for all the support, prayers, and love we've been shown.

        I am both nervous and excited for these next few months.  Everything is new; the good and the bad.  There will be many ups: rehab - the strengthening of my body and lungs.  To be actually walking, running, exercising... the excitement of everything being new; and just enjoying life.

        And there will be downs: especially adjusting my body to all the new medications and new lungs... and, wow, there's a lot of medications.  And there's a lot of work; struggle; and pain yet to come.  It's a long road, but as the days go by I know it will get easier; for I will get stronger.

        We shall remain strong; my dearest and I, side by side.  We will remain hopeful knowing so many people are praying; feel loved by our family and friends; lean on each other always.  And I will definately remain stubborn, because that's just who I am.  ;)

         This journey is long; the chapters keep coming and closing.  We've closed so many - Being extremely ill is done; pre-transplant wait is over; lung surgery is done; post-transplant hospital recovery is done - now a new chapter has opened: Healing. <3

        God is good.

 Much love,

        ~Julie Jean

(p.s. I love you, mum. Thank you always.)

Two weeks :)

"The first day of April is the day we remember what we are the other 364 days of the year." - Mark Twain

~another short post~

        Happy April 1st!  Two weeks post transplant today!  I am so lucky and blessed!  My Joe and I are stoked to be stepping onto this new road of life - this second chance in living!

        Today I got my left lung tube out and the right lung tube switched to a bulb (both of which drain fluid/blood from my lungs - which is important :)  The bulb should be on for several days before it finally gets taken out - excited for that!  Anther step towards freedom and relief.  

        I've got a bronch scheduled for tomorrow to clean things out of my lungs; and soon I'll be being discharged.  Thursday I have my third swallow test... PRAY FOR ME!  I'm ready to eat again... no April Fools ;)  I'm so ready to to get back to our temporary "home" and finish this healing process and finally head back home to all our family and friends. :)

          Yes, we're stressed because we've gone through so much; and there's so much to do.  Hoping, knowing, it'll all fall into place... like it has thus far!  Thanks to all of you :)  With God on our side and all the prayers we've received, I am sure it'll be fine.  Still praying, though; and crossing my fingers.  Now, I am off to spend the rest of the night visiting with my love - watching baseball (opening day!) and other random shows!  First time relaxing together in a long time...

(Two weeks post transplant! BAM!)

(Smoochies to my hubby!)

        God bless!  Hope you had a good first day of April! :)

Much love,

     ~Julie Jean