This is me; little Julie 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