First Ever "Five on Friday"

Some of my blogging friends have been taking part in the "Five on Friday" thing where they share five things that are on their mind each Friday.  I figured I would give it a shot this week, since I definitely have a LOT on my mind lately.  I probably won't do it every week, but as the urge hits me I will share my thoughts with you.  

1.)  Many of you have asked for an update on my health.  While I typically try to keep this blog a happy place, every now and then it's necessary to share some of the not-so-pretty parts of my life.  I usually don't share much about my health unless I'm outright asked by someone.  I just don't want it to define who I am.  I also don't want people to feel sorry for me or feel all gloomy when they see me.  I'm kind of over being "the sick girl".  God created my body in His image and to Him, it's perfect.....flaws, health problems and all.  I have been called to a higher purpose than to just sit around feeling sorry for myself.  For whatever reason, the Lord saw fit for this to be the plan for my life.  Who am I to question that?  His thoughts are not our thoughts and His ways are not our ways.  I have to remind myself of that almost daily.

With that being said, two weeks ago I had a liver "surgery" (really just more of a procedure) where they went in and did some exploratory investigation and also took a few biopsies from my bile ducts.  It was my 4th time having this particular procedure done over the past 3 years so it was really no big deal.  The real challenge was waiting for those biopsy results to come back.  One of the things they were looking for was a rare form of bile duct cancer, for which there is no cure.  Yikes.  I tried to put it behind me and not worry, but that's much easier said than done.  Thankfully, the day before Thanksgiving I received the results stating that the biopsy was negative for cancer.  Oh happy day!  Praise the Lord!  Answer to prayer!  

Just prior to having this procedure, I was given a MELD score (Model for End Stage Liver Disease) in which I am ranked based on my labs and liver function tests.  This is how they go about distributing livers to those of us who are in need.  It's not about how long you've been on any particular list, but rather what your score is.  Obviously, those with the higher scores are given the most readily available organs.  I was given a score of 15.  My doctor said that typically when you start scoring close to 20, they begin the process of looking for a match.  That's a little too close for comfort if you ask me, but again I tried to just put it behind me and not think about it.

One of the purposes of the procedure I had two weeks ago (besides taking biopsies) was to "clean out" my bile ducts in hopes of bringing down my liver function tests which would in turn bring down my score.  I honestly haven't felt any better since the procedure, but I was hopeful that perhaps it did in fact help in some way.

Today I received a call from my doctor giving me the results of the blood work that I had done yesterday.  He told me that they have not yet given me a new score, but he did have some other unnerving news.  My bilirubin level has jumped to 17.5!!  It was only at 7.5 in late October during my last blood draw.  It's a record high for my body, never having reached this level before.  Just to put things into perspective, a "normal", healthy person has a bilirubin level of somewhere around .5 on average.  That should give you an idea of how bad things are.  

He was pretty surprised that the procedure actually seemed to make things worse, rather than better.  It only makes sense that if my labs are elevated, then my MELD score will also have taken a flying leap.  Not exactly the news I was hoping for, but it is what it is.  He asked me how I'm feeling and I told him all the same things I always have----I'm extremely fatigued, completely jaundiced and itching to the point of wanting to scratch my skin off.  All typical of end stage liver disease.

I originally wasn't supposed to see my liver doctor again until January, but he asked me to come to Vanderbilt on Monday.  This works out perfectly because I already have two other appointments with my GI surgeon and my GI doctor that very same day.  So I'll spend the entire day being poked, prodded and questioned.  

I'm not really sure how I feel about this news.  In a way, I'm SO ready to just get on with things.  It's no longer a matter of IF a transplant will be needed, but WHEN.  So I say let's just do it!  I have lots of living to do and (hopefully) some more babies to have!  I feel like if we keep putting it off, I'm just living miserably and wasting my life away.  I realize an organ transplant is a HUGE risk and the outcome is not always good.  There are so many things that could go wrong.  Trust me, I've thought of ALL that!  But living like this is not living at all.  It's survival and I'm tired of just surviving.  I just want to feel good again.  

Then, my emotional side kicks in and I start thinking about what it truly means to have an organ transplant.  It means someone else (someone relatively HEALTHY) has to DIE in order for me to live!  That's really hard for me to process.  It seems so wrong to wish for something so badly, knowing it means some other family out there will be experiencing unimaginable grief and heartache.  I'm not sure how I will handle that when the time truly comes for me to receive a new liver.  I can hardly even think about it without being brought to tears.  

All I can do is trust that the Lord will give me the strength and the faith that it takes to face this new obstacle.  I know that He will, because He always does!  His mercies never fail me and His grace is sufficient!  There is nothing that happens in my life (or yours!) that hasn't first passed through His hands.  He's got this.

As I'm typing this, I'm listening to praise music on my iPhone and these words are resounding in my heart so I wanted to share them......

"He knows my name

He knows my every thought

 He sees each tear that falls 

and He hears me when I call"

Also, a sweet friend posted this on Facebook earlier today and it has stuck with me.  

"The very things you take for granted, someone else is praying for"

Wow.  That sure did put things into perspective for me!  What am I taking for granted each and every day?  I can think of hundreds, just off the top of my head!  As I love to remind myself, there is ALWAYS.....ALWAYS......ALWAYS something to be thankful for!!!  Think about it!

2.) I mourned celebrated my 31st birthday this past Tuesday.  The day will not soon be forgotten, but not for the reasons you may think!  Much like my 30th year of life, my 31st birthday was less than kind to me.  It's comical, really.  What can you do but laugh??

It started the day before when Kyndall shared her cold germs with me and thanks to my immuno-compromised state, I immediately started feeling awful.  Happens every time.  My doctor actually suggested that I start wearing a mask when I'm in large, crowded places like malls, the grocery store, even church!  I'm not sure I'm ready for that, but if I can't stay well this cold/flu season I may have to consider it for my own safety.  Even the slightest cold could turn deadly for someone who has no immune system.

ANYWAY......Tuesday morning came and I somehow managed to drag my sick-as-a-dog self out of bed and get Kyndall to school.  I actually begged her to just stay home but she really wanted to go.  I knew that taking her would be the best thing because it meant I could come home and rest.  But getting both of us dressed and out the door seemed like an impossible task.  But, I did it!

I came straight home and got back in bed.  I actually had to set the alarm on my phone to make sure I woke up in time to go get her!  I canceled the lunch plans I had with Matthew and told him I would rather sleep than eat.  Again, I drug myself out of bed and headed to get Kyndall from school.  On the way there I had pretty much decided that we would be skipping dance class that afternoon.  I just didn't have the energy to get her changed and then sit there for an hour waiting for it to be over.  But then my Mommy guilt kicked in and I realized how unfair that would be to her.  She LIVES for Tuesday afternoon dance class and to deny her of that would just be wrong.  So, I sucked it up and decided we would go.

We had about an hour to kill between school and dance so I decided as a "treat" we would run to the mall and get a pretzel and an Icee in the food court.  Two of our favorite snacks!  Kyndall asked to dip hers in honey mustard, so I obliged and forked over another DOLLAR for a small container of "dip dip" as she calls it.  She devoured her snack and we headed off to dance class.

I got her dressed and all was going great.  The girls were lining up on the mats and class was getting ready to start.  Kyndall had been running around with some of her friends and that made her start coughing a little bit.  Due to the phlegm (sorry!) from her previous cold, she kept coughing....and coughing.....and then gagging.....and then choking.....and then PUKING!!!!  ALL.  OVER.  EVERYTHING. !!!!!  You should've seen those little ballerinas scatter as Kyndall christened the dance mats with rancid yellow honey mustard, mixed with a bit of Coke Icee!!!!  I wanted to CRY!  The more she puked, the more she gagged and the worse it got.  

I managed to take her out of the dance room and as hard as I tried to hang her over a nearby trash can, it just didn't work.  It continued to go EVERYWHERE.  I didn't know what to do---I knew I needed to go back in the room and clean up so class could start, but I couldn't leave her there puking in the hallway alone!  Aaaaaahhhh!!!  (Did I mention I am NOT a good nurse??  I don't do vomit, blood or bodily fluids very well at ALL....Not even when it's my own child!  I just am not cut out for it!)  I was almost to the point of tears when my sweet, sweet, sweet friend Jenny (who happens to be an ER nurse) came running to my rescue.  She helped me with the clean up process and also calmed me down a bit.  A little puke is nothing she doesn't see on a daily basis!  

When it finally stopped, I looked down to realize it was all over her tutu, tights and in every possible crease of her CUSTOM ORDERED ballet shoes!  What a mess.  I stripped her down and prayed we could at least make it home without it happening again in the car!  

Thankfully we made it home without incident, but I was absolutely frazzled by this point!  Even on a day when I felt GOOD, this would've been hard to handle, but mixed with my pounding head, fatigued body and shot nerves, it was 100 times worse.  All I could think about later was how embarrassed I was!!  I know she couldn't help it but I just wish I'd have trusted my initial instincts and skipped dance class all together!  Or at least skipped the honey mustard drenched pretzel!!

Matthew called on the way home and asked where I wanted to go for dinner.  I said "NOWHERE!"  I told him to just pick something up and bring it home!  No way was I venturing out again.  This day just needed to be OVER.

My night got slightly better when we enjoyed a peaceful dinner (that I didn't have to cook--yay!) followed by sweet cards and a Hobby Lobby gift card from my two loves!  After I put Kyndall to bed for the night and I finally sat down to try and relax for the rest of the evening, I looked down to see something very peculiar.  There, on the front of my pants, down around my ankles, it looked as if something yellow had been splattered on them.  What in the world??  Then it hit me.  That's puke!  I hadn't even noticed it until then.....probably 6 hours after the "incident" occurred.  And you know what?  I didn't even get up and change.  I sat right here on the couch in those very same puke covered pants until it was time for bed.  Yep, it was that kind of day!  All I could do was laugh.  God certainly has a sense of humor, doesn't He??  So as I said, this will not be a birthday I soon forget!  Even still, with all of the crap-tastic details of my day, I really had no room to complain.  I was given another year of life, which in itself is a miracle!  I have a healthy, happy daughter whom I adore and a husband who loves me unconditionally even on my ugly days.  That's just the tip of the ice burg.  I couldn't possibly list every blessing in my life.  The good far outweighs the bad, no doubt about it!!!

Thank you Lord for another year of life!

3.) We're currently in the middle of our first ice storm since moving to Tennessee this past January.  Like a typical Florida girl, I freaked out yesterday and ran straight to Target and stocked up on water, batteries, milk, bread, flashlights, cash and filled my car with gas.  Call me crazy, but I've lived through a few too many hurricanes not to take these warnings seriously!  I don't do well "roughing it" so the thought of losing power scares the life out of me.  Yesterday as I was waiting for my labs to be drawn, I struck up a conversation with a nice lady who informed me that during the last major ice storm, they were without power for 9 days!!  And prior to that, they once went without it for 3 weeks!!!  This cannot happen.  I will surely not survive.

So far it's been pretty mild.  It's about 30* outside and it's been raining/sleeting all day.  The trees and cars and the roof lines are all covered in the most beautiful, sparkling icicles!  No actual snow yet, just lots and lots of freezing rain and ice.  We haven't lost power and everything is pretty normal for now.  I hope it stays that way!  I'm really bummed though because we were supposed to be participating in our Sunday School class's Christmas party tonight.  It was going to be a progressive dinner and we were really looking forward to it.  But, they called it off last night due to safety concerns.  

One GOOD thing about being stuck inside is you're forced to get things done.  In between entertaining Kyndall, I've unpacked several boxes, done laundry and caught up on some housework.  However, I'm sure that will get old after just a few days!  

4.) I'm super excited about this upcoming week!  So many great things happening, all packed into just a few days!  On Wednesday, my Mom will work her very last day EVER, as she will be officially retired as of 5:00 pm Wednesday afternoon!!!!!!  I'm so happy for her!  (If you've been living under a rock, perhaps you've missed her DAILY countdown on Facebook!) She's worked hard her whole life and never had the blessing of staying home.  I know she's going to love retirement and this new season of her life!  (And we're going go love our new frequent house guest!!  Sorry, Dad!)  

Mom isn't wasting any time taking full advantage of her new found freedom!  First thing Thursday morning, she's picking up my Grandma in Two Egg and they're headed north to come visit for a few days!  Our church is hosting a Mother/Daughter/Grandmother Christmas brunch on Saturday morning and I invited Mom and Grandma to come several weeks back.  It will be a special time for us, as we'll have four generations represented.  I can't wait to show them our new house and introduce Grandma to Jackson---she's never been!

On Sunday, Mom and Grandma will head back and they're taking Kyndall with them.  HALLELUJAH!!!  Wait, maybe that came out wrong!  =)  I will certainly miss my girl, but I have SO MUCH to get done---a house to finish unpacking, Christmas shopping (which I haven't even been able to start yet!!!), wrapping, and then packing up to head home for two weeks.  Matthew and I will follow a few days later and spend our Christmas and New Year's with our families.  I always look forward to the end of the year because Matthew saves a lot of his vacation time up to ensure we're able to go home for a nice long visit during Christmas.  

5.)  I'm feeling a little stressed.  No, a LOT stressed. As many of you know, I wait ALL YEAR LONG to make and send out our Christmas cards.  I do not take this lightly.  I send out an average of 200 cards and I put great effort into making sure they're signed, sealed and delivered by the first week of December.  I've found that if you get your cards out first, those you sent to will be more likely to reciprocate!  =)  And y'all know that I practically go skipping to the mailbox each and every day during the month of December!  Getting Christmas cards is one of my absolute favorite things about this time of year.  

Knowing that, you can imagine my heartache when the printery where I ordered my cards called and said there was a problem with their machines and it would be an extra two days before my cards were ready.  Ok, I can handle that.  I called just about every hour during the promised day and finally got someone on the phone.  Bad news again----it would now be ANOTHER two days.  So that put us at yesterday, Thursday.  Again, I called and was told now they've run out of PAPER!! WHAT?!  Overnight that junk and get my cards printed!!!!  I can understand a problem with the machines but out of PAPER?!  REALLY?!  So now they're saying *maybe* by tomorrow, which is Saturday, the SEVENTH day of December!  Normally my cards have already been received by this point and this year I haven't even laid my eyes on them yet!  I even begged them to go ahead and give me my envelopes so that I could start the tedious process of addressing 200 cards.  Nope, they refused.  It takes a lot to light my fire, but sabotaging my Christmas cards is one way to do it!  I thought about cancelling my order and placing it somewhere else, but that might take just as long or even longer.  

So.....have no fear, the Hughes Christmas cards will be on their way SOON......I hope!  Please don't neglect to send me one just because you haven't received mine!!  Pretty pretty pretty please!!!!

And no, I will never again use this printery for any of my photo needs!  NEVER, I tell you!  You just don't mess with this girl and her Christmas cards!

So there you have it, my very random and very long-winded first ever "Five on Friday".  I'm pretty sure they're not supposed to be this lengthy, but I had a lot to share.  If you're still reading, thanks for sticking with me!  =)