Wednesday, June 1, 2011

Playing Catch UP!

Hmm...begining where I left off a few weeks ago...I did go home on Friday 13th.  They also completed my ABG's and the results were...well...pretty odd.  All my levels were very normal...PH, CO2 (believe it or not) NOW..for the not o2 was 67%.  My o2 sats were hanging around 94%.  My PFT were pretty I did not go home on IV's.  I do go back to UAB the end of the month.  I have to have a right heart cath. {}  I think I will also a complete a 6 minute walk test while I am there.
I have been enjoying Skywalker's baseball games more than ever!  The swimming pool finally opened and we are now spending lot of time there.  Skywalker has been having lots of spend the night company and today I took all of them bowling.  I had just as much fun as they did.

We are close to vacation count down!  We will be spending the week on the beach with our family.  I am ready to start packing.

Wednesday, May 11, 2011

Too Blessed

I think I have just about finished my tests  for transplant evaluation.  I hope to get ABG's in the morning followed but new PFT's.  My plan is to go home on Friday, that being said....if my PFT's are low I will have to continue IV's at home for another week. Earlier this week, I did have an ecocardiogram of my heart and a CT of my lungs.  My understanding is that I will return to transplant clinic in a few weeks to meet with the doctors and discuss my test results.  At that time, they will decide if I will be placed on the active transplant list.  I keep telling myself that the doctors are going to tell me that I am not ready to be placed on the list.  But, {{{{OH>> MY GOSH!!!}}}}if they tell me I am a good candidate for transplant, my body will go into shock.

I pray as I begin this difficult walk in my life, that I can inspire someone with my experiences, my thoughts, and my life.   I am excited to see what God has in store for me as I begin this challenging stage in my life.

 I am way to blessed to be stressed!

A-Z about ME :)

I borrowed this idea from a fellow Cyster.

A: Age-36

B: Best girlfriend: Mim

C: Chore I hate: Ironing

D: Dad's first name: Chubby

E: Easiest person to talk to- G.I. Joe

F: Favorite drink- Mello Yellow

G: Gold or Silver- Silver

H: Height- 5' 5"

I: Iphone- Holy Moly... YES..

J: Junk food- Gummy worms

K: Kids- Skywalker

L: Longest car ride- to Disney World

M: Make-up- Not really

N: Not a fan of- Laziness

O: One wish- To breathe easy

P: Place- The BEACH

Q: Quote from a movie- "You know why I married you?... so I can kiss you anytime I want." 
Sweet Home Alabama

R: Restaurants:  Bonefish or Bayou Bill's Crab house

S: Song I last listened to- I won't let go..Rascal Flatts

T: Time of the Year- Hands down SUMMER

U: Unknown fact about me- My ears are always clean

V: Vegetables I dislike- green beans, okra, red tomato

W: Worst habit- biting my nails

X: X-rays for a broken bone- Many bc I broke both arms at the same time when I was 12.

Y: Yummy food I make- homemade creamy corn, mashed potatoes and gravy

Z: Zoo favorite- Penguins 

Monday, May 9, 2011

Focused on Faith

The Bible said, ‘For by grace you have been saved through faith. And this is not your own doing; it is the gift of God’ (Ephesians 2:8) 
Faith is a gift of God.  A thought comes to mind. Air that I breathe is a gift from God. It is  everywhere. But actually, I could choose not to breathe. Air is a gift from God and so is faith. It’s a matter of either.. we want to received it or not. Yes, faith is a gift from God but it is our job to ‘breathe’ and received faith from Him.  Faith in God means that I am willing to trust Him to carry me through my sickness.  He chose me to walk a life of sickenss.   Blessed with  my sickness, I have an urgency to focus on what is really important to me.  The clothing, the cars, and the items I posses are not what I focus on.  When I take pictures, which I love to do, I focus on fingers, toes, smiles, and holding of hands...always the small things.  Focus is amazing. Focus changes your perception in your life.  . Usually, how you feel about things, and the meaning of a particular experience, is all dependent upon your focus..especially on God.

Sunday, May 8, 2011

Happy Mother's Day to me....

Don’t you love when a certain activity triggers a happy memory that instantly brings a smile to your unexpected,spontaneous, out of the blue smile. I look at these moments as little gifts. One little thought can fill my heart with so much joy. I can amuse myself for several minutes just by reminiscing about that one happy moment in time.

When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.

My favorite two boys surprised me with a weekend visit.  After ball practice on Saturday morning, they drove over with homemade food and gifts.  I really did "kinda"...think they would show up for the weekend.  They brought me cookies from my sister and potato soup from my mom (THE VERY BEST!).  For supper last night, we walked down to Moe's.  That was the first time I have been out of my room since Monday.
We played fruit basket turn over all night.  I started off the night sleeping with Skywalker.  During the night, he got in the chair with his daddy.  When we woke up this morning, Skywalker had the chair to himself and G.I. Joe was in the bed with me

If I had my child to raise all over again,
I'd build self-esteem first, and the house later.
I'd finger-paint more, and point the finger less.
I would do less correcting and more connecting.
I'd take my eyes off my watch, and watch with my eyes.
I'd take more hikes and fly more kites.
I'd stop playing serious, and seriously play.
I would run through more fields and gaze at more stars.
I'd do more hugging and less tugging.
~Diane Loomans, from "If I Had My Child To Raise Over Again

I found this beautifully written poem this morning.  As I read it again and again, I starting thinking.. really?? Would I really do things differently?  I have raise my child with circumstances that are very rare and different.  I have raised him in the moment where every smile is special and every "i love you" could be the last. 
**This is when I know that being sick is also a blessing.

Friday, May 6, 2011

First Transplant Evaluation Test

I came back in the hospital on Monday.  I was on the sick road to nowhere so I decided to detour to the hospital early.  My PFT's were 50/35.  I still had a little room for sickness, but glad I came on in.  

Today, we started my first transplant tests.  I have already had at least 16 tubes of blood drawn.  I have had x-rays of my chest and sinuses.  I also had a sonogram of my abdomen this afternoon.  All I have left for today is a TB test.  So far, nothing to it....I may eat those words later on next week. 

Thank You LORD for facetime......I have been able to see and talk to G.I. Joe and Skywalker every morning and every night.  It puts the biggest smile on my face to see them.  Skywalker likes to walk around the house and show me everything.  He thinks it will make me feel like I am at home. 

 Skywalker got contacts today.  He was so excited.  He has never complained with his eyesight, but obviously he could not see according to the doctor.  He told me as soon as he left out of the office, "Mom, I sure have missed seeing a lot of things while I have been blind." He could not wait to go to the batting cage and hit some balls....or maybe that was his dad that was so excited...hmm.....

Saturday, March 19, 2011

Spring Break

We made it home from a week of sun, sand, and a lot of fun!  The weather was a little cool and the water was a little colder.  It did not bother  Skywalker at all.  He swam all day and then also in the heated pool at night.  I enjoyed just sitting in the sun on the beach watching G.I. Joe and Skywalker playing football.  The food each night was just wonderful, but the all you could eat crab legs was my favorite....well, the all you could eat boiled shrimp was a hit... too!!!!

I still am a little short of breath when I get in a hurry to do something.  I go to transplant clinic (1st ever visit)  and CF clinic the end of the month.  I am hoping my PFT's have gotten better and not worse.

We start baseball this next week so I will be a mom on the go!!  I LOVE baseball season.  I am counting the days till school is out so Skywalker and I can be together all  day.

We have church in the morning and then Monday.. Skywalker is back to school.  G.I. Joe is off work and taking me to the ENT for a follow-up.  After that, we have a TON of grocery shopping to do...

Wednesday, March 9, 2011

Back to the House

I came home from the hospital on Sunday! My PFT's were much better.  So much better that I was even shocked a little. (56/39) I think his is pretty much my standard now when I am feeling pretty good.  I have been laying in the bed for 3 weeks.  Maybe I can get them up a little more before I go to my clinic visit the end of this month.

 I could not wait to get home and get in my shower and my bed!   It seems like forever since I have been home.  We have not had a since of normalcy around our house since the beginning of January.  I have either been in the hospital or G.I. Joe has been away from home with his job.  But needless to say, we are home, happy, and ready to make up for some lost time!
I cancelled the Orland trip last week and now we are headed to Destin for spring break!  We are all excited and Skywalker already has his luggage out on his bed.

Restlessness and impatience change nothing except our peace and joy. Peace does not dwell in outward things, but in the heart prepared to wait trustfully and quietly on Him who has all things safely in his hands.

Monday, March 7, 2011

Soul Mates

OK...So I decided to answer questions about G.I. Joe and our relationship.

How did you and your honey meet?
We ran into each other about 3 times before we actually talked.  I think we just stared at each other a lot.  We met at house fire through a mutual friend.  I asked him what had happened...and his first words to me.."Looks like something got pretty hot!"  So, I walked off thinking..not so sure I want to talk to him again.  But, he could not resist and he called that night and we have never stopped talking to each other.  When we returned home from our first date, I told my mom that night... "I'm going to marry him!!"

What is the thing that you love most about your marriage?
He is the lover of my soul.  He knows every little thing...flaws and all and still loves me.  He's my best friend.  He's got my back!  He's my number one fan.  He's the one person who I can completely be myself with, and that to me is the biggest gift in the whole world.  It's what marriage should be.

How long have you been married?
It will be 16 years in May.

About your husband?
He is the perfect fit for me.  He's all about the details...I'm not.  He works hard for us.  He loves our son  with all his heart.  He loves the Lord and strives to be the spiritual head of the home.  He cracks me up.  He has the most awesome hugs.   We view the world in the same way.  So fun to be able to see things eye to eye.  He's romantic and always makes a big deal about spoiling me for Christmas, Valentine's, our Anniversary etc...  And this is probably my favorite thing...he loves to surprise me to the extreme.  I love that he loves with everything in him.   He doesn't just coast through life never appreciating it.  He holds things close and knows that life is short.  He's my man and I don't know what I would do without him.  Oh and added bonus...he's pretty darn HOT too!  HE COMPLETES ME!

The lord has blessed me with a wonderful man.  My desire is to love & respect him and to raise Jace to see our love acted out on a daily basis.  
If you've been married for 15 years & maybe forgot all those wonderful things he does that drew you to him in the first place.  Do you remember when you first got engaged? How for days afterward, regardless of what you were wearing, you walked like a princess because the ring on your hand showed that you were well loved.... choose to remember that... Remind him of those things that you love about him... praise him in front of your children and to your friends...try to go to bed at the same time he does and  above all remember that tomorrow is not a promise, it's a luxurious gift that if it's given must be received with a grateful heart, appreciated & lived fully.

we lived happily ever after!!!

Saturday, March 5, 2011

Oh..The Love for my Child

Kids don’t remember what you try to teach them. 
They remember what you are.
— Jim Henson 

There is no higher calling in my life or greater joy in my heart than raising my child.
Lord, fill me with your love and grace and mercy and compassion and gentleness.
Give me your patience and kindness.
Help me to be slow to anger and quick to forgive.
Teach me to depend on you for all my needs.
Give me a grateful heart so that his heart is filled with thanksgiving.
Let him see me rely on your provision.
Let him see me wait on you.
Let him see me trust in you for my friendships so that he can trust in you for his.
Let him see me seeking you so that he might seek you also.
Help me to always be mindful that he is watching me.
It is by your grace...
that I raise him and teach him and show him the way.
It is by your grace....
that he follow you all of his days.
It is by your grace alone.

I love you so much, Jace.  Your smile is so sweet.  Your laugh is so loud.
Your touch is so soft.  Your hugs are so tight.
You make me proud everyday.  You make my heart full
of joy.  You are a gift from God.  
You are my EVERYTHING!

Friday, March 4, 2011

The Days Roll By..

Day 19..and the days are getting slower!
I guess call it beach fever or spring break fever, but {{GOLLY}} do I have a BIG bad case of it.!! We have plans to go to Orlando and stay at the Nick Hotel for the week.  Skywalker has now decided he doesn't want to go that far and that he wants to go to Destin.  WOW..hard to believe, but he is my child and I LOVE complaints here...and G.I. Joe said he is just the driver and just tell him where to go...So now I plan on spending the day looking for somewhere to stay for the week.  We have tons we can do in feels like home when we are there.  I keep telling G.I. Joe that I would love to move there.  He has 2 more years with his job and I think he would pack and go also.  Skywalker would be in the truck ready to leave if we told him.  He is part fish and as long as we were close to the water, he would love it.

How lucky am I to have 2 of the greatest guys in my life!!  It doesn't matter where we are...what we long as we are together...having fun..laughing..smiling..and loving each other.

Wednesday, March 2, 2011

A long Club Med stay

So.. I should just have an UPDATE button.  It  would be much easier to do this more often, but where does my time go?

Well, I have now been in the hospital 2.5 weeks.  I have about a 1/2 of a week left.  This has been a long stay for me, but boy was I sick when I got here.  I had a sinus infection for a week and the stomach virus at home before I caved in and got admitted to Club Med.  After two weeks, I finally did my pft's (42/32) and they were in the bottom of the bucket somewhere.  I plan on doing them the end of this week, so I am praying for a bigger and stronger number.

This visit stirred a lot of questions about transplant.  We have talked a little about it and so I went to a pre-evaluation transplant class the other day.  It was full of helpful information, but  {{{GOSH}}} not so sure I am ready for this.  I do know I hate being "this" sick...and really I have farther to fall, but I would be scared too.  I keep thinking if I go and transplant before i get "TOO SICK" then it will help me recover sooner and stronger.  But, then I selling myself short on the lungs I have?? Could I get more out of them?

My CF friend Ashley got new lungs yesterday.!! Praise God.  I had just talked to her the day before and she told me she had been listed for 2 years.  She was ready for a family and to start her life.  Well, I can tell you...God was listening in on the conversation and what a blessing!!  

I am really missing Skywalker and G.I.Joe this week.  But, I have received some of the sweetest text messages from them.  It makes my heart smile :)  At night, Skywalker has decided if he will stay on the phone and talk, then he doesn't have to go to bed on time.  So...I am a sucker and we talk!!  We have plans for an awesome Spring Break.  Boy, we need it...lots of us time....hugs...kisses...laughs...and smiles!!! That is better than any dose of medicine for me.

Here lately I have cried out to Jesus so ofter...not always for what upsets me, though...I find myself "thanking" him for my life, my family, and my doctors.  So what if I have CF, what an amazing life it has given me....
NO love greater than the CROSS!!!

I have discovered that patience is not the ability to wait, but the ability to keep a good attitude while waiting." 
-Joyce Meyer

 I have so much and have beaten this disease in so many ways already...but I want more.

This is what I look forward to...

Maybe growing old is overrated? I still want it. Lord knows...we don't always get what we want. I guess there is always HOPE...

Monday, January 24, 2011

I miss my Friend

A Special Friendship was not made by jumping in the car and riding around..b/c I never saw Summer outside the hospital. It was not made by hugs and high-fives...b/c Summer and I were not allowed to touch each other. It was not made b/c of outer beauty...b/c Summer and I always had masks covering our faces when we saw each other. This friendship was different

We called to talk about our O2 sats, our wheezes, and always about how we felt. We talked about how God blessed us with our amazing children...(that we NEVER thought we would have..) We talked about our husbands that sacrificed many things because they wanted to take care of us. This friendship was about God giving each of us one more more breath.. This friendship was based on one of us pulling the other one along on the days that we had a bad attitude about being sick. Today, God is carrying me in his arms because I am missing you pulling me along...
Summer, You were an inspiration to me...Love Always....

Written Jan 6th, 2011

Saturday, January 22, 2011

A week at Home

Days go by and I  {{{SCREAM}}} why????  I tell myself...I'm  really tired of this...Am I even living?  My answer..."nope"..I work  at this just to exist.  I get up to do breathing treatments, I follow that up by two IV's and then my blood sugar bottoms out.  I sit at home alone during the day counting my respirations, checking my pulse ox, looking to see just how blue my toes are, and then it's time for another breathing treatment.  Around and around I go, just to finish one treatment only to start another IV.

So after being home from the hospital 5 days, I have decided...This is the stuff that is getting to me lately.  God puts it in front of me so that I can realize how blessed I am.  I am here, RIGHT!!  I have a purpose. So I know God is no where finished with me, yet!  So. I have decided, I am letting go..a leap of faith...GOD..TAKE CONTROL OF IT ALL!!
I am not in this alone. I have a son with the grandest heart. he loves me!!  My husband...absolutely is amazing.  I have a wonderful family and some of the greatest friends!  Being sick is NOT the end of the world!

Remember, THINK BIG for God is big, don’t be scare to START SMALL in your faith and GO DEEP in it. God alone can move the ‘mountain’ in your life.  Daily he moves my mountains.  I know the days that my breaths seem so heavy, God always lightens them and my faith in him inspires a smile on my face.  

Friday, January 14, 2011

Not the adrenal gland??

When your at the end of your rope...tie a knot and hang on !! I am only able to hang on because God put glue on that rope for me......

The doctors have been working on some blood work lately and they believe we could have an answer.  I have been complaining...(very little...well ..I mentioned it one time) about feeling light headed in the energy (no..I'm really not lazy) low blood sugar....low blood pressure....can't tolerate cold weather.. very shaky (like from the inside out).  Come to find cortisol levels are they label me as having adrenal insufficiency or adrenal burnout.  So you ask??  What do you do for that???  If your like me, you google it 12 million times before the doctor comes in to  talk to you about it...haha...I am now going to take a small dose of
HYDROCORTISONE each day!!!!  are you kidding me.....STEROIDS>>>>>>>>>OH...Golly .. I DISLIKE that.!!!!  So I am was it worthing finding out what was wrong...or should I have just lived with it??  I really am hoping this is something that in time I can taper off of.  I am hopeful that I will start really feeling better.

 You always hear everyone say, "When it pours."  The Bunkers really need so many prayers to lift their family at this time.  He is in the hospital and they have found a mass on the frontal lobe of his brain.  I believe he will be having surgery on Monday.

Do you lift your eyes to the maker only in times of pain?  Do will lift your eyes daily? Do we only cry out when we have fear?   We never know what is ahead of us daily...We should call out daily to GOD.  He is waiting to hear from us daily.  I know I have alot of mountains ahead of me to climb.  What a blessing it is to know God wants to hear from ME!!!

Saturday, January 8, 2011

Hour by hour

Today, I feel like I have watched the clock on the wall ...tick..tick..tick..My days seem to slowly fade by when I  am in the hospital.  I just received a text from Skywalker.  He also sent a picture that he had just taken of himself.  The simple words that followed....I love u....   My heart aches for him while I am away.  His little smile makes me melt.  There are days that I wonder....what will happen when God calls me home?  What about Skywalker and G.I. Joe?  Who will leave the lights on in each room so G.I. Joe will have something to fuss about...{ha.ha.ha}  Who will scratch Skywalker's back at night?  Who will sing the wake up song to him before school?  I know God has a plan for this.  He already has it all....worked out.  I pray everyday that I find a way to make each day special...Even my bad days are good.   I have another moment...another breath...
The life I have now is only the beginning.

Psalm 2:8
 I will instruct you and teach you in the way which you shall go. I will counsel you with my eye on you.

Thursday, January 6, 2011

Ramdom @ UAB

I am back in the hospital.  My sweet husband is with me through the weekend.  I am so sick of this place!!  I am so sick of meds...breathing treatments...IV's...doctors...nurses, but it's like G.I. Joe always says..."The alternative would not be good.."  PFT's 52/36 admit

I really love this song..but of course I had to change it a bit....

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the OCEAN at dawn
Send me away with the words of a love song

Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors
Oh, and life ain't always what you think it ought to be, no
Ain't even gray, but she buries her baby

The shallow breaths of a short life
Well, I've had just enough time

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the ocean at dawn
Send me away with the words of a love song

The shallow breaths of a short life
Well, I've had just enough time

And I'll be wearing white when I come into your kingdom
I'm as green as the ring on my little cold finger
I've always known the loving of a man
And it sure felt nice when he was holding my hand

There's a soilder here in town, says he'll love me forever
Who would have thought forever could be severed by
The shallow breaths of a short life
Well, I've had just enough time

So put on your best, girls, and I'll wear my pearls
What I never did is done

A penny for my thoughts, oh no, I'll sell 'em for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singing
Funny, when you're dead how people start listening

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the ocean at dawn
Send me away with the words of a love song

The ballad of a dove
Go with peace and love
Gather up your tears, keep 'em in your pocket
Save them for a time when you're really gonna need them, oh

Posted Late

Written on Christmas 2010
What to celebrate....Of course the birth of MY LORD and SAVIOR...
With that being a mom, I can't help but celebrate the happiness I get out of watching Skywalker taking it all in!!  I could go a lifetime without a gift to unwrap.  What I have can't be days and nights are magical because of G.I. Joe and Skywalker.

We had a blast at my parents home opening up gifts, but we saved the best for last.  Skywalker's last gift of the night was a beagle puppy.  Oh...Oh...he was so cute...and excited...{SMILE...GRINS...KISSES}.  As soon as he picked up the puppy he called him BUDDY.  

Christmas morning was so much fun.  These are the moments I will remember a lifetime.  We gave lots of hugs that morning and kisses.  We played for hours with new games and toys.  That is what makes my life completely worth it.

I have been feeling pretty good lately.  I am staying close to the house.  I know I have got to get past the New Year before I go back to the hospital.  I called and got a refill on some meds to get me by.  Seems like G.I. Joe is doing alot of grilling lately.  I just can't seem to get enough energy to get going.  But nobody is complaining about the grilling...It is AWESOME!!!

Isaiah 9:6
For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. 

Christmas is UP! La

Aw....Christmas Lights....We now officially look like Christmas around here!!  Amazing what a few hours of decorating will do.  Skywalker and his cousin did a wonderful job decorating the tree.  Now, he thinks I should already have presents ready to go under the tree.  What a joy it is to see his little face light up.  I believe it is brighter than all the lights on the Christmas tree.  Thank you, God...for allowing me to see his sweet smile. (Last week of November)