Wednesday, May 29, 2013

Prepare for rambles...

"There's no place like home; there's no place like home..."

~Lots Of  RaMbLeS~

(picture from the Rangers vs Tigers game)

        How  I wish all I needed to do was click the heels of my ruby red slippers (I actually have some) and I could suddenly appear home sweet home again.  Sigh.  If it could only be that easy.  Yes, if you can't tell, I am very ready to be home again!!  Tomorrow I have a clinic appointment and we're going to talk to the doctor about that very fact... "Can we please go home now?!"  It would be about a month early, but I'm doing so good, hopefully they'll make an exception.  ;)  My coordinator, and main nurse, thinks it should be fine.  So as long as nothing happens in the next few days, it should be ok.  Not going to get my hopes up... Wait.  Who am I kidding?  I'll be crushed if we can't go home soon!  No, for real... I don't want to rush anything.  God knows when it's best.  I'm just sayin' I'm ready.  :)
        Anyway, I wanted and needed to write a post... so that's why I am here... writing a post.  Didn't want any of you worrying or thinking I've abandoned you.  ;)  
        So... as you can tell from the picture, Joe and I went to a baseball game whilst here in Texas.  It was my first major league game... and it was awesome!!!!!  I'll post a few more pictures at the end of this post.  It was nice getting out and doing something real fun.  I surprised myself with how much walking I did... walking clear across the world (well, actually just the stadium, the long stretch pathway, and the parking lot) to and from the car.  Both Joe and I were like, "This would've been impossible before transplant..."  Very blessed!
        Other than that, we've recently went out with some Kansas friends who are also here in Texas post transplant.  We know them from our clinic back home.  We are so blessed to have friends who are dealing with the same things and totally understand what we're going through.  And, besides, they are pretty freakin awesome people.  I hope we stay connected and continue to get to know each other!  We went to church together, lunch, then a movie.  It was nice.  Hopefully we can get together again before we leave.
        So... I've been thinking a lot about my future plans, goals, and dreams.  I mean it's like the first time in my life where I can actually dream and plan with an actual realistic ability to achieve them.  That's a nice thought, huh?  I do have a "To Do" list.  It's mostly in my head, but I want to write it down.  A few things on the list are normal, but others are kinda crazy.  Hehe.  ;)  Like I want to visit each state in the U.S., get a picture of me and Joe next to the state signs, and of course get a souvenir from each... Hey, why not?!  I've ALWAYS wanted to travel!!!  And that'd be soo cool to be able to say I've been to EACH state!  Other than that there's things on the list like I want to get back into photography and start my own little business.  I want to do a lot of artsy things... Write a children's book, definitely keep crocheting (making pillows, purses, blankets, etc.), make music videos, learn to paint, relearn the piano (and remember and record my songs).  Um... I want to eventually get a car... Uh... definitely spend an entire week in Hawaii... Oh and of course travel through Europe :) I mean, come on, they aren't too unrealistic dreams.  ;)  There's lots more on the list, but the number one dream both Joe and I have is definitely to adopt a baby.  God willing... hopefully when I'm all healed we can start looking into that.  I don't think I could go my whole life without being a mother.  :)
        You know what ... I realize I'm just rambling.  I guess I'm just in a random mood.  That isn't too surprising.  ;)  Anyway, I don't got much more to say really.  Each day has been busy... lots of ups and downs; mostly ups, though.  :)  Rehab is going great; I am slowly getting stronger and more confident in myself with what I can do.  I love the therapists... they're awesome!  I'm going to miss them for sure... I'm going to miss a lot of peoples here.  But, yeah, still want to go home.  ;)  I miss my friends and family too much... but I'll for sure keep in contact with the people here.  Besides I'll be seeing the nurses and doctors at least once a month at my monthly clinic visits!  ;)
        Speaking of... Clinics have been fine.  They haven't been that often, because I'm doing so well.  I did catch a bug and had to go on antibiotics for ten days.  Today I started to feel a bit "bleh" ... so I'm hoping I'm just tired and not catching something again.  :/  Nooooo!  ;)  We shall see tomorrow, I guess.  Tomorrow I've got labs, x-ray, pft, rehab, seeing my coordinator, and seeing the doctor.  Yeah, long day!!  So say a prayer for me, please!
        Okay.  That's enough Julie rambles for today.  I hope your day is beautiful!

Pictures from the game:


Much love!  Xoxo
                        ~Julie Jean

Wednesday, May 8, 2013

This last month...

"Home is where the heart is..."

~it's been forever~

        I'm sorry I haven't written in forever... almost an entire month!  Don't be angry - I've been busy!  ;)  So much has happened since my last post, I'm afraid if I try to tell it all in a nutshell I'd forget something... but I'll try to sum it up.
        It's been 51 days since my lung transplant.  Can you believe it?!  There have been ups and downs, for sure... but it's all been worth it, because I can breathe!!  :) 
        I had a slight rejection, which resulted in three days in the hospital on high doses of steroids - I think it's all good now.
        I've gained weight!  I'm wavering around 100 pounds, which is good.  I've still got a long way to go, but definitely closer to my goal of 115-120.  :)  
        My blood sugars are FINALLY starting to go back to normal... which I am stoked about!  My insulin intake is diminishing, as well... which means NOT AS MANY POKES!  Yes!  ;)  
        My pain level has also been dwindling.  I don't take as many pain meds and am going to stop the the prescription pain meds all together, hopefully, and just start taking regular ol' Tylenol.  Woot!
        My IS numbers are going up (which means my lungs are expanding better)!  My PFT numbers are going up also, which is awesome!  I believe right now I'm at 57%   :)  Still got a ways to go, but getting better!!
        My strength is building - thanks to my wonderful rehab therapists pushing me hard to do ALL my exercises.  ;)  The exercises involve walking on a treadmill, riding a bike, stretches, and squats.  Some of it isn't too hard, but the squats... oh my... I hate squats.  ;)  My legs are just so weak.  :/  My body definitely gets worn out after an hour of rehab, but my lungs not so much.  :)  Aw, it's so wonderful to be able to breathe...
        We went to a ballet; a performance by a friend's dance school.  It was so beautiful and inspiring!  Wish I could have taken some videos or pictures...  My friend, Sarah, did an amazing job dancing!!  So wonderful and beautiful.  All the performers were fantastic!  Made me wish I could dance.  ;)  And really really makes me want to make music videos with ballet incorporated into it!
        The best news I have, though, is that Joe and I got to go home for a week last week!!!!!!!  The doctors just surprised us with letting us take a "vacation."  Jodi, the head nurse, asked me while at clinic, "How long has it been since you've been home?"  I said, "Since before Christmas..."  She goes, "Go home for a week.  It'll be good for you."  I was stunned and to the point of tears.  I said, "Really?!?!"  She said, "Yes.  It'll be good for your soul."  It was amazing!!!  Only a selected few knew we were coming - we surprised everyone else!  It was so wonderful in so many ways!  The reactions of our parents and siblings were priceless.  :)  We filmed their  reactions... I'll edit that video and post it as soon as I can on our channel on YouTube.  My heart was aching to go home; my heart was so touched and felt loved by everyone's reactions.  I love and miss home... can't wait to be back for good.
        The week was packed with activities... we saw so many people (friends and family).  We got to meet one of our nephews that was born while we were gone.  I finally got to meet my godson; another nephew.  We went out to eat; went to movies; went shopping; chilled out at our parents' houses; visited visited visited.  It was wonderful and amazing!!  
        I got to take senior pictures of my eldest niece Nancy. Oh my gosh I loved it!  I can't wait to get back into doing photo-shoots!  I miss it so much.  Love you, Nancy!  You're beautiful!
        Lucky for us - we got to make it to a fundraiser for us that people have been planning for weeks.  It was a Cinco de Mayo Mexican dinner with a raffle and a silent auction.  Oh my it was so neat!  Joe and I are deeply touched by the amount of work that went into it, the compassion of those working it, and the crowed that actually showed up!!  Jugglers and a Mariachi band showed up unexpectedly!  The love, generosity, and support we've been shown was evident at this dinner.  We are truly touched and grateful .  So anyone who is reading this who was in any way involved - Thank you, thank you, thank you!!
        I want to mention... We just couldn't leave town without visiting Rafe and Joe's grandma's graves.  It was difficult and yet so beautiful to visit the them.  It was the first time I'd been there to visit my Rafe.  I placed a white rose on his grave; talked to him; and cried.  Oh how I miss him... yet I know he is with me always.
        Our visit home was, truly, good for our souls.  We feel refreshed and so ready to finish these last few weeks of living so far from home.
        Lastly, I thought I'd just mention, I've become obsessed with crocheting.  :)  I've finished five projects in the last two or three weeks... and am currently trying to figure out designs for more projects I have planned! It is relaxing and so fun... and I love giving the crocheted items away to my friends and family.  I gave two bags to my mum and mom-in-law; I made a baby beanie for one of my nieces; I have a purse for my baby sister; and I made a Tardis (from the show Doctor Who) cell-phone case for myself.  :)  Truly fun!
        Okay.  So there you go; the last month in a nutshell.  I hope I haven't forgotten anything.  I'm sorry this post isn't eloquent, poetic, or at least written more smoothly... just a bunch of facts.  Ha!  Hey, it's an update!  I'll try to be more awesome next time.  Oh, and here are some pictures to add to the story.  <3

Much love!
                 ~Julie Jean

the mother's day gifts for my mama's
the purse I made for my youngest sister

the Tardis cell-phone case
A few pictures from the dinner...
Cake made in memory of my brother Rafe. He loved bowties. :)
t-shirts made for the dinner
rain barrel made by a few siblings for the raffle
On our way back to Texas.