"Try. What do you have to gain? Everything. What do you have to lose? Everything." - Jean Etta

-New Year's Eve-

 

I believe one of the reasons I'm writing this is because of the need to get it all out.  Not just to keep you updated, but for my own sanity as well.  It's like I'm trying to convince myself it's going to be ok, while I'm explaining it to you.  And writing has always been a stress reliever, so here we go.  To be honest, life is going to change for us; we're hoping for the better.

             To put it bluntly, I'm doing the one thing I always hoped I'd never have to do. I'm starting on the road toward a double lung transplant. No, I'm not getting it tomorrow, nor the next day; I have just begun the long drawn out process.  And how long it will take, from beginning to end, is never known.  Each person is different; each experience is different.

As I've mentioned before, I was born with a genetic disease called Cystic Fibrosis.  All my life it's slowly physically pulling me down year by year.  But I was used to it; used to the work and effort it took to stay well.  I know, in a way, it may feel like somewhat of a failure to have to receive new lungs now; like we did something wrong, or there was more we could've done.  It isn't. There wasn't.

I have to mention my mother here.  God bless her; she has kept me alive and is the reason I've had such a good quality of life.  Because of her research, dedication, determination, hard work, love, support, constant care... my life has been wonderfully blessed.  She has always been there for me; always by my side, night or day; coaching , healing, encouraging.  Without her, I know I wouldn't have made it as far as I have.  Thank you, mum.  Thank you, thank you, thank you.  You gave me the stubbornness and will to fight.  And, mom, we did not fail.  God has His plan, regardless of ours.

However, life sometimes throws us a curve ball.  Two years ago, my health took a turn for the worst, and I never completely recovered.  From January 2010 to present, I have been on continuous oxygen.  And this last year has been the worst.  In and out of the hospital more often than not; my health is declined to the point of "the choice."  To transplant or not to transplant...?

 I know all my life I have fought against having to receive a transplant.  I'm sure nobody wants to have to receive one; but you got to do what you got to do.  There's no denying the fact that my CF lungs are tired, exhausted, and basically done.  I can't explain to you how difficult it is to get up in the mornings unable to breathe; have to struggle through the daily routine of life (without even leaving the house); work as hard as I can to stay as well as I can, but not wear myself down; and the continuous feeling of tightness in the chest and sides.  To get short of breath just walking from one room to the next; not being able to feel like a good wife in any way shape or form.  So many hospital visits; the slow decline of my lungs; feeling like the struggle gets more difficult day by day; catching every bug that comes my way; missing out on so much of life.  All the signs are there; I need new lungs.  And this last sickness in November finally was the last straw.  Nothing, not even a transplant, could be scarier than what we just went through.

This winter threw me over the edge.  I caught a bad kick-in-the-ass virus.  My brother and I both caught the virus; and both almost died.  For three weeks in November I was in the hospital.  For eleven days on that visit, I was basically unconscious and on the ventilator.  After I awoke, I had to heal slowly and receive physical therapy.  I had to relearn to sit up/sit down, walk, talk, eat; basic movements we take for granted until we can't do them.  I had to come off the narcotic meds; which was a weird-ass experience.  I did not like it.  I had to deal with blood sugar ups and downs; anxiety attacks; unable to talk or eat for days and days.  I was moved from ICU, to the heart unit, to the cf floor. 
      After all that, I went home to continue physical therapy.  Joe and I went into hibernation and I did nto go anywhere public (except one time to the nearest hospital for a test, but I woke mask and gloves and sanitized).  We had protocol Joe followed after he got home from work.  We had no visitors.  And, still, SOMEHOW three weeks after leaving the hospital, I caught a cold.  So we went back and I got readmitted to be monitored.  I've been here, this visit, now almost two weeks.  Not much progress.  I was doing better at first; two days ago I started having stomach issues which has caused a chain reaction of setbacks.  :/  Hopefully we'll get it figured out soon.

My lungs are so fragile right now; I have no reserve left.  I feel like I'll be doing a balancing act up until I receive the new lungs.  And I wouldn't be surprised if I stay close or in the hospital until then, as well.  I feel like I need to settle in for the long haul.  "Move in" kind of here.  Yet, I need to focus on the positives.  The possibility of a new lease on life; a new clean slate; a new fresh pair of lungs.  It is positively dreamlike.  The thought of being able to take a walk, ride a bike, to run, to travel, to camp, to go out, to not have to wear oxygen.  It seems so unreal and too wonderful to imagine.  But it is possible.  If it all goes well, if the surgery goes well, if the new lungs take, if my body does not reject, I could get a new fresh start on the life I've always wanted; a life where I can actually breathe.  It would be a beautiful miracle for me and my husband.  To be able to do things we can't now; to be able to live.  I can only imagine how it will feel to take a deep breath and have it keep going and going; to feel my lungs open and expand; to be able to simply breathe.  That brings a smile to my heart.

Everyone I talk to speaks so positively about it.  I've talked to many people; doctors, nurses, RT's, surgeons, actual transplant patients.  I've been told: "It is scary, but the outcome is better than the alternative."  - "Liberating.  The whole experience can be summarized as liberating."  - "It was the best decision I've ever made" - "Why was I scared of this? I wish I would've done it sooner."  "It will be a whole new life for you. You'll get there"  It is these thoughts I need to hold onto; these thoughts I need to remember as I walk this scary road. 

Now, on the other hand, this new life won't be easy as pie.  I'll be trading one set of problems for a new set of problems.  Transplants have their ups and their downs.  My body will still have CF, so I will have to work hard to keep my lungs healthy and strong still.  I will have to be on immune suppressants for the rest of my life... which has all their own side effects.  But there's always the possitibility of rejection.  I will need to wear a mask and gloves in public (but that's actually a step up for me - no oxygen!.)
          I am used to work; I am willing and eager.  I'm willing to take the chance.  For so long I was afraid.  I still am, but in a way I wish it were happening tomorrow.  I wish it were now; just to have it over and done with.  The anticipation the waiting, I believe, will be the hardest part.  Then being wheeled into the operation will be the scariest moment.  Giving my husband a hug and saying goodbye; then letting go, drifting to sleep, and hoping to wake up after.  That thought sends shivers down my spine.

On a slight side note - My husband and I had our first year wedding anniversary recently.  This past year for us has in many ways has been beautiful.  We've grown so very close in our relationship and friendship.  We've learned a lot about each in many ways.  We've strengthened in trust; learned our quirks; and all that is normal in the first year of marriage.  We are deeply in love; more than ever before.  On the other hand, we've also had the hardest year together, because of all my health issues. We've sacrificed a lot; in many ways.  We've been to hell and back together, hand in hand.

During the November hospital stay Joe proved to me, without a doubt, that he loves me so very much.  I've always known so; but his acts of service, kindness, aloyalty, bravey, and love has shown through so perfectly.  Sitting by my beside the entire time I was sedated; talking to me while I slept; he wasa there when I didn't even know it.  After I woke up he helped lift me off my bed; helped clean me; dress me; encouraged me; carried me... and countless other tasks.  He loved me.  He only left to go back to work (three hours away) after he knew I was stable and someone was staying with me.  Then he visited weekends; and still is visiting weekends.  This experience has help me to fall so very much more in love with my Joe.  He is my miracle; my angel.  He can be ornery and quite a dork sometimes, but I love him that way.  My nerd. ;)  He is definitely my gift from God.

 

Just so everyone can keep track of where we're at in the process.  Here's how I was told the process will go:

1)      The first step is to make absolutely sure insurance is going to pay for it all.  We'll know FOR SURE by Tuesday.

2)      Also Tuesday my doctor is going to send out recommendations to different transplant centers.  I have no idea what center I'll end up; I'm told if they accept me, I can choose anywhere.  We're starting with sending letters to ones in Texas and Missouri.

3)      A center will contact me and set up an appointment.

4)      I will go to the center and get evaluated.

5)      They will run all their tests.

6)      The staff there will then decide if I am eligible for a transplant. Hopefully they say "yes."

7)      They will list me.

8)      I will most likely move prior to surgery to live temporarily near the center.

9)      Then is the waiting game... and I wait for a pair of lungs to become "available." I know a lady who waited over a year for her lungs; and I also know of a girl who waited only a few weeks. So, honestly, I have no idea.  That's all in God's hands.

10)   I get the "call" and I rush to the center and go through surgery to receive my new lungs.  (At this point I hope everyone is in the adoration chapel praying, prying, praying!)  Hopefully the surgery goes well and I wake up... able to actually breathe. ;)

11)   Then comes post surgery.  Again, every person is different.  There's recovery, physical therapy, and simply healing from the actual surgery.  Then I will have to live near the transplant center for several months immediately following surgery; for continuous checkups and tests.

12)   When the doctors are comfortable with my progress, healing, and ability to know the "signs and symptoms" of rejection, they will let me go home.

13)   I will have follow up appointments with both the transplant clinic and my usual clinic. 

14)   I'll have to still be somewhat of a germaphobe for quite a while, because I will be on immune suppressants.  So I'll still be wearing a mask and gloves wherever I go.

15)   Then comes life post transplant.  Hoping no rejection occurs.  Staying active, working out, and staying strong... and living a long, healthy, happy life.  That sounds good, right?

 

So there you have it.  It may be selfish to say, but I believe Joe and I have had our lifetime of difficulties.  It's time for some relief.  Our Lady, guide us.  Jesus, hear us.  We've had our "bad times" and our "in sickness."  We are hoping this next year will start the "good times" and "in health."  I don't think that's too much to ask for, Lord. :)  I'm going to try.  What do I have gain?  Everything.  What do I have to lose?  Oh, everything.  So keep us in your prayers.  One more day until the new year; one more day until our life changes; one more night it begins.  Eyes closed tight; waiting to open them at sunrise.  A new road; a new life; a fresh start; relief; hope... a new hope. ;)
    Take my hand, love.  Walk with me.  Let's beat this shit. ;)

 

Happy New Year's Eve!

                                ~Julia Jean

"And you remind me that it's not so bad, it's not so bad..."
 

-An uP and DOwn Day-

                "No change is better than bad change..."  True.  I need to keep reminding myself of that.  My lung function test today was the same as when I came in this hospital visit.  So, even with a week of meds and therapies, my function has not gone back up to my current baseline.  A baseline that already was horrible.  So I went from a crap pft number to a crap-shit pft number... and am not budging, as of yet, obviously.  Sorry for my language.  It is a bummer and very frustrating.  No change is better than bad change, Julie. No change is better than bad change. "I feel good, I feel great, I feel wonderful..." Haha, my siblings should get that reference.  ;)

                Everyone keeps saying, "You look great! When are you getting out of here?"  The doctors all say I look good, sound good (for me), labwork is good... I reply with, "Yeah, I feel great... except for my lungs."  I just don't have much reserve left in there.  The docs do say it's a good thing in preparing for a transplant to have the rest of my body and organs doing well.  It's more likely I'll be accepted and do well in the transplant process then.  So, hey, that's a plus!  Count your blessings.

                On a more lighter note; steering the topic away from my lungs.  I know most girls don't like to gain weight; a gain of even a few pounds can send some people into tears.  I, however, am the opposite.  Each pound is a "wOOt wOOt" hollered in success!  My baseline weight generally ranged between 95 to 100 (yes, I am a petite girl).  Last month, in the midst of being vented for 11 days, unable to eat, and only receiving tube feedings, I had dropped to the weight of 80 pounds.  Eghad!!  The lowest I've been.  Today, a little over a month later, I weighed 96 pounds. :)  Regardless of how light that still is, for me that is quite a gain!!!  And I am proud of myself for working so hard. :D  It is difficult for me to gain weight!  I know I am still a feather of a person; but I'm thrilled with progress.  Again, counting my blessings!

(this is why I am gaining weight, people - just breakfast)

               Now, to be qualified for a tranplsant, I need to be around 115 or 120 pounds.  So, though I am making great progress, I've got a ways to go.  Hopefully this fattening trend will continue.  Just as long as it doesn't all go to my stomach and face.  Ha!  Steroids do that too, though, so maybe tapering off of those will help... if that doesn't make me unable to breathe in itself.  And, yes, my husband has already started calling me "Tubby." :D Haha! I don't care; he's a goof. And he rejoices with me with each gain, so I know he's proud. :)

               And on a fun note... Today I got a spontaneous idea.  There is a beauty salon downstairs of this hospital (go figure), and I felt I wanted a change...  put the two together and you get my mom and I going to the salon to have a bit of girl time!  I got my hair cut, styled, and colored!  It was an early (two month early) birthday gift from my mom.  Haha!  Thank you, mum!  She is the best and sweetest!!  It certainly did brighten my day.  I love it!  :)  So as I write this, I am once again a redhead; and am loving it.  I believe redheads do have the most fun. ;)

To change the subject entirely, before I end this post; I want to mention this.  Words mean so much to me.  A comment can make or break my day.  Kind words touch and warm my heart to no end.  They encourage me.  They give me strength.  I don't think I could make it through this journey without the love and sweet words of my family and friends.  You can ask my husband.   I often cuddle myself in his arms (that's where I feel the most safe) and whisper, "Say sweet things..." ;) (Sigh. Missing my sweetheart suddenly.)  And recently so many people have filled my heart with their thoughtful words.  So thank you.  I love it.  You remind me that it's not so bad; it's not so bad...

So the day started out rough, but is ending on a happy note.  And to make it even better, I just received a call from an aunt and uncle.  They serenaded me; singing Have Yourself a Merry Little Christmas!  It was beautiful.  Thank you!  It melted my heart.  Truly. I love them both!

However difficult the day starts; just wait, it could surprise you and end ever so sweetly.

 

Love,

                ~Julie Jean

~*~Feliz Navidad!~Merry Christmas!~*~

        Merry Christmas!!! :)  This song has been running through my head all week.  It's perfect.  Thought I'd share...:

 

"Have yourself a merry little christmas

Let your heart be light
Next year all our troubles will be
Out of sight
Have yourself a merry little christmas
Make the yule-tide gay
Next year all our troubles will be
Miles away
Once again as in olden days
Happy golden days of yore
Faithful friends who are dear to us
Will be near to us once more
Someday soon, we all will be together
If the Lord allows
Until then, we'll have to muddle through somehow
So have yourself a merry little christmas now..."

 

        We miss our family and friends; we miss home.  This road we are walking can be so rough, ruggid, and unfair.  However, maybe next year all will be better; maybe next year all these troubles will be far away.  Until then let's stay strong together; let's muddle through somehow.  I love you all.  I love you, Joe, with my whole heart.   You are the most wonderful husband in the world; and you made my Christmas perfect this year.

        Overall, it was a wonderfully beautiful day!  We skyped with my parents and my brother upstairs; we got calls from family; we skyped with my family at home; we opened presents... it was special and sweet in it's own unique way. :)

        Tonight, though, is a sad night knowing my love has to leave in the morning.  I will, mostly likely, be here several more days.  Honestly, whatever it takes I am willing to do.  My dearest is fast asleep in the recliner beside my bed while I write this.  We were mostly quiet as dusk fell upon us, both deep in our own thoughts as the night grew late.  I hate saying goodbye, but I know it'll probably only be until the weekend when I see him again.  Oh, Saturday, you can't come fast enough... I miss him already.  So now, before the next nurse comes in to give me more medication, I think  I'll scoot my bed as close as I can to my honey's chair, wrap my arm around him, and try to rest.

        So Feliz Navidad, everyone!  Have yourself a merry little Christmas and may God bless each and every one of you... and may all your troubles be far far away.  To all a good night!

 



 

Smiles, hugs, and loves,

                           ~Julie Jean

"Silent night, holy night..."

!~!!Christmas Is Coming!!~!

 

Merry Christmas Eve, peoples! Watched a few movies, opened a few presents, skyped with my husband's family (who sang to us my favorite Christmas Song Feliz Navidad), called my family, visited with my parents, texted with my brother upstairs.  Overall, even though I was a tad emotional from my steroid being tapered down today (it always does that to me), it was a good day!

Oh in many ways this night is so different than all the years before... it seems so odd not to be home, around all the familiar faces, tearing apart wrapping paper, having that holiday togetherness. Yet, watching my husband's family on skype tonight open presents, laugh, dance, it was a riot and I loved every minute of it. Even though we weren't there, we were still there. Thank you, whoever invented skype. You are a lifesaver.

I'm going to spend the rest of the night cuddling with my honey (if he'll let me ;) and checking Google periodically to see where Santa's at in the world. Hehe ;) And tomorrow morning - we're skyping with my dad, mom, and brother in his hospital room upstairs and having our Christmas morning together! We'll be eating breakfast and opening presents; it'll be grand! Means a lot to be able to do that... then later in the day we're skyping with more of my family during their get togethers at their homes (again, thank Heaven for skype:)  Christmas may be different, I may sigh a few sighs, but the day will be perfect; just the way it was always supposed to be. And, surprisingly, I'm still so excited about it and giddy like a little girl!  CHRISTMAS!!! :D

             From our hearts to yours - have a happy, healthy, safe, and merry Christmas Eve! Just a few more minutes until Christmas; our Lord Jesus' birth. Such a gift we received the night He chose to be born. :)

     Christmas hugs,

                     ~Julie Jean

 

p.s. Oh my breathing test today, I mentioned in the last post, was the same as when I got here; didn't go up or down.  I'm thinking they're going to want to keep me for a while until the numbers go up.  Lord, have mercy. G'night! Sleep sweet.

"I'll be home for Christmas; if only in my dreams..."

(our hospital room tree :)



-The eve of Christmas Eve-
 

It was the night before Christmas Eve and all through the hospital not a patient was stirring, except for me.   ;)  My husband is sleeping in the recliner next to my bed and I'm wide awake.  It's really late.  My body feels exhausted, but my mind won't stop thinking.  So I'm writing a post. :)

My husband arrived yesterday!!!! :D  He'll be with me through Christmas and I am a very happy girl.  He brought with him a Christmas tree, from his mom, and presents!  So our room is nice and festive right now!  And we'll actually get to open gifts on Christmas morning! :)

Today was a long day.  My husband left early to go to a football game with his dad and brothers.  I'm so glad they got to go!  They had fun.  And I spent the day crocheting, eating, taking meds, eating, facebooking, eating, skyping, and eating. ;)  Yes, sometimes that's all I feel I do is EAT!  But I have to gain around 20 more pounds, I believe, to fit the requirements of a lung transplant.  So I'm trying my hardest!  Eating during the day and having tube feedings through my mic-key button at night.  And, hey, I think it's working too.  Today they weighed me and I had gained four pounds since Wednesday, the day I arrived again at the hospital.  And last month, in the fiasco of almost dying and needing to be vented for 11 days (Okay, I will probably eventually write another post explaining that entire November experience someday) I had lost around 15 pounds... and since then I've gained almost the whole 15 back.  I'd say that's progress for one month's work!! :D  I can do this.  ;)

After the game, Joe's dad and brothers visited me for a while.  It was so nice to see them!  And they all looked super cute in the masks they had to wear to enter the room.  ;)  I got pictures too!  Of course, I am quite the picture taker.  It was very sweet of them, though.  Joe and I are lucky to have such a wonderful family.

(the guys)

Speaking of beautiful family... my heart did break a little today. While talking with one of my sisters over skype one of my little nephews asked, "Julie, are you going to be home for Christmas?" I frowned, shook my head, and said, "No, love..." His face sunk and he was quiet.  He looked so sad.  I was like, "Oh, baby, I'm sorry... I miss you and love you!"  He answered, "I love you..." then walked away slowly.  They're always asking me when I'll get to come over next and telling me they miss me.  I miss them too!  I want to give them all bear hugs.  Oh, I miss my family!

Since then the lyrics, "I'll be home for Christmas, if only in my dreams..." have been running through my head.  It makes me miss everyone; then I realized not only in my dreams, but in my heart I am home for Christmas.  We'll still get to see everyone through skype and I'm sure Joe and I will make the day very special together.  So, cheer up, Julie Jean. ;)

 My respiratory therapist just came in and gave me my breathing treatments.  We chatted.  He was so very sweet.  He said something that really touched my heart; and made me laugh a little.  "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 comes 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 you life is.  Smile now; this is your life.'"  Good self quote, Mr. RT, good quote!  Then he added, "God bless you for your positive attitude."  Our chat made me smile. :)

So happy Christmas Eve, peoples!  Hug your loved ones closely.  Smile.  Be cheeful that you are with them.  And if you are far from the ones you love, call them and let them know how much you care.  It could mean the world to them; and I'm sure will bring you joy too.  I love you, dear family.  I love you, my fantastic friends.  To all those near and far, may God bless you over this special holiday of our Lord Savior's birth.
              Now, my yawns are getting more frequent and I can feel my eyes drifting.  I think it is time for me to snuggle in my bed, hold my husband's hand, and fall fast asleep.  Praying I have a small Christmas Eve miracle tomorrow and my breathing test goes well.  Muah!

(me and my love)

Hugs; and a kiss under the mistletoe,            

                                                            ~Julie Jean

"No one knows about that day or hour, not even the angels in heaven, nor the Son, but only the Father." - Matthew 24:36

 

("Enter the colors..." An artsy photo I took. For me this picture represents a new beginning.)

 

..."And I Feel Fine"...

 

                So the world didn't end yesterday.   That's nice; it's always a good thing when that doesn't happen.  I guess now we can continue on our merry little way assured that the Mayans just ran out of space on their rock, or got distracted, or simply wanted to freak those of us in the year 2012 out a little bit.  Either way, we're still here.  Doctor Who must have saved us all once again this holiday season (if you don't understand that reference, you're definitely not from my family.)  It's funny; our Lord really meant what He said about the end of the world:  "No one knows the day or hour... except the Father."  Imagine that.  ;)

                The weekend in the hospital is usually pretty quiet.  Today has been no different.  After the rush of the morning with nurses and doctors coming in one after another, the day usually goes by rather slowly.  However, tonight my husband arrives to spend a few days; and my sister visits tonight too!  She's bringing presents.  So excited!  :D  So it's really not all that bad; just got to push through until tonight.  :)

                This is a short post.  Wanted to say "Yay" and celebrate all of us being alive today.  Which, actually, we should do every day; but I'm sure most people probably used yesterday as a reason to have a beer and a good time.  I can't blame them... it was rather humorous and a good excuse to party.  ;)  I spent the night watching the clock until midnight skyping with my sister, whilst she wrapped presents and listened to her neighbors singing Christmas carols upstairs very loudly.  Haha!  Then we said, "Horay," together the minute after 12am.  It was a splendid time!

                I hope your Saturday is a perfect one.  Take a moment, relax your body, and breathe deeply.  Smile in this moment; this moment is your life.  Find joy in the fact you're alive; and are loved more than you know.

My love,

                ~Julie Jean

p.s. Hey, siblings, that Doctor Who plot would actually be rather funny, don't you think?? ;)

"I have a story in my head that wants to be told. I have a rhythm in my heart that wants to unfold. My body dreams to dance; my spirit seems to soar. My voice sings higher than the stars. And all I want is more." - me :)

 

~introducing me~

Hey, internet world!  This is my first blog.  I'm just going to introduce myself a little bit.  My name is Julia Jean - or "Julie" Jean, JulieBug, LuEllen, Lula, Lou... and so on.  I'm a petite lady; just over 5 feet tall; but I'm not short I'm fun-sized!  I'm a romantic and a dreamer.  I have my associates of arts degree; I'm an artsy type of girl. I laugh loudly. I sing quietly. I'm shy until you get to know me. I am stubborn, dedicated, determined. I love to have fun. I express myself a lot through writing, art, and music. Some of my hobbies include crocheting, cross-stitching, painting, photography, poetry, sketching/drawing, and dabbling a little in piano and mandolin.  Don't be surprised if I share some of my art or writing on this blog. :)

I have many dreams and goals in life I hope to accomplish.  Such as, if I am ever able, I want to have a home photography studio and focus on pregnancy photos/children and baby portraits.  I also dream of making music videos and short films.  I want to someday take a vacation to Hawaii and watch the sunrise and set on the beach with my husband.  I want to travel and photograph the world. :)

I am in my late twenties and am blessed to have found the man of my dreams; the man God chose just for me - my Joseph.  We've been married just over a year now - so we're still like newlyweds. ;)  I will say I am truly truly blessed to have my husband.  He has proven in many ways to be my knight in shining armor, my protector, my love, my best friend.  I'm one lucky girl; I'm just saying...

I am Catholic; and my religion is dear to my heart.  I am a middle child from a family of 10 children and my husband is the oldest of 10, so our family is huge; and we love it!  Family means the world to us.  We are also blessed to have a beautiful group of friends whom have been very supportive and loving.  Basically, we are blessed with those around us. :)

I was born with a genetic disease called Cystic Fibrosis.  I've been on oxygen continually for almost 2 years now.  I am actually in the process of stepping onto the great and mysterious road of receiving a double lung transplant.  There will be a post about that going into more detail in the near future (and several more keeping you updated), but this is just an introduction post.

Although I am a shy and sensitive person, I can also be blunt and honest.  So do not be surprised if I say exactly how I am feeling when it comes to Cystic Fibrosis and my emotions.  I will say, now, that having CF is very difficult, but this is the life God has chosen to give me; the cross I am to carry.  And I love my Lord with all my heart, soul, strength, and mind. I know in His plan I am happiest.  I have been to "hell and back again" a few times; healthwise - physically and emotionally.  However, I do trust that the Lord will never give me more than what I can handle, but sometimes I wish He didn't trust me quite so much.  ;)  Sometimes I'm like, "Really, God, really??" Haha!

Today, as I write this, I sit alone in my hospital room - other than people poking their heads in every few minutes asking if I need anything (the staff here is truly amazing); my brother (who also has CF) in the I.C.U., with my devoted mother by his side, a few floors upstairs (miss seeing their faces); and anxiously awaiting for the arrival of my husband tomorrow evening.  Yes, spending Christmas in the hospital is not ideal, but I get to spend it in the loving arms and company of my dearest; so that's good enough for me.  It's difficult being so far from family; we're scattered all over this year.  Yet, we will try and still make it a special Christmas - skyping with family and cuddling with my love.

So, basically, this is me, little Julie Jean.  I guess you'll just have to follow my blog to get to know me better.  I hope you enjoy my updates and posts.  Opening my life and heart for the reader to read and scrutinize is rather scary. I've held off writing a blog for a while, but felt it was proper timing; and I think I'll actually enjoy it.  I hope to be somewhat entertaining as I let you take a peek into the complicated, crazy, beautiful life that I live.  Here I am; I am me and that is all. :)

 Good night, sleep sweet, take care, and merry Christmas in a few days!!

 

Much loves and hugs,

              ~Julie Jean

 

p.s. Please forgive any grammar mistakes; and don't worry about spell-checking my writing.  I'm really not caring about all that too much. Hey, it's my blog!  Haha!  Teesa, this means you. ;)