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Monday, August 31, 2009

Money Mayweather

Today I watched this video of Floyd Mayweather Jump Roping and it is awesome, Jump Roping is #2 to Running, so it is a beneficial cardio exercise. Plus it's fun.



1 ensure, 350calories 13grams of protein. I hardly ever eat a good breakfast, I need to change that.

ex. long chili cheese coney (from sonic) 600calories, 24grams of protein
2 ham sandwiches, 400calories unknown protein
2 ensures, 700calories 26grams of protein

Ramen Noodles, 380calories 8grams of protein
2 Ensures, 700calories 26grams of protein

6 Ensures- 2,100calories 78grams of protein




30mins of Jump Roping
.2 miles on my bike


9:00AM- Albuterol & Vest
9:10AM- Hypertonic Saline
9:30AM- Pulmozyme
9:40AM- Tobi

3:00PM- Albuterol & Pep

5:00PM- ALbuterol & Pep

10:00PM- Albuterol & Vest
10:10PM- Hypertonic Saline
10:30PM- Pulmozyme
10:40PM- Tobi

Sunday, August 30, 2009

Back at it!! (FOR REAL THIS TIME)

I've been a little "down in the dumps" or whatever you wanna call it but I was really encouraged yesterday to start something different and "push through the tough times".

People with CF or CF parents find it easy to create systems or schedules to keep them on the right track daily FIGHTING CF! That's good, don't get me wrong, but let me point out the flaws in that:

I'll compare it to working out, because that's the only way I know.

When you workout, You come up with a plan that may work for about 3 weeks, during this 3 weeks you will see a dramatic change in your body, your stamina, strength, maybe even your body will visibly be different. After the 3 weeks, however, your body goes through what is called a plateau. This is when you stop seeing your dramatic changes and your just maintaining. What you have to do to continue to see the dramatic changes is CHANGE UP YOUR WORKOUT.

Here's the Kicker, With CF we will come up with systems, schedules, plans, blah, blah, blah, etc. They WILL work....for about 2-3 weeks, some of us will get lucky enough to make them last for a month or 2. After that, in reality your body, and your mind will get "bored" of doing it and shut down. You will eventually, like I did, miss treatments, dread getting up in the morning, or just completely stop everything. THIS IS BAD!!! DON'T GO THERE!!! What you need to do is constantly change your workout schedule, try new things with your pills, different pill containers. Get new nebulizers, new nebs always do the trick when I get bored with my treatments because I just gotta try them out!

Change your systems up as soon as you feel like you can't do something because, "you don't have time" or whatever the case may be.

Ok now enough of that lets get to the videos that motivated me to get BUSY!
these videos were made BEFORE I made the "Tough Times" blog, and incredibly, I didn't even watch them before I made the post.



Breakfast- Coffee from Starbucks (which it's pretty good, but I don't like the idea that 1,000s of people around the world would DIE if the local Starbucks shut down. Plus coffee stains your teeth, hence the picture! My teeth are YELLOW! My 3rd cup in my whole life and my teeth are STAINED..I probably should have brushed them in between my 3 cups over the last 2 years)

Unknown amount of calories- probably 800, it was a vente (that means large, grande doesn't.)


2 HOMECOOKED Pizza burgers- 1,000 Calories, unknown protein
2 ensures- 700 calories, 26grams of protein

2 Giant ham sandwiches- 1,030 calories, 40grams of protein
Gatorade and Caprisuns- I don't count sports drinks:(

6 ensures- 2,100 calories, 78grams of protein


GOAL WEIGHT: 150lbs (Pure muscle:)) lol
CURRENT WEIGHT: 130.2 (down about 5lbs) BOOO!


Before I exercise I found it helpful to take a few puffs of albuterol along with huff coughing and pep, then to RECOVER, after my workouts I did a 30min vest with Hypertonic Saline, Pulmozyme, and Tobi.

Praise and Worship during Church (if that counts, lol) I don't think it does, but I was jumping high!

30mins Jump Roping (Yes JUMP ROPING)

I got a new Jump Rope yesterday and I want to start doing it everyday, I tried it with some phone wire the other day and it made me cough up a LOT! And I felt real good afterwards!!

1 hour of Jump roping after Church


7:00AM- Albuterol & Vest
7:10AM- Hypertonic Saline(while on vest)

I WAITED 20mins UNTIL I DID MY PULMOZYME (I was informed through a conversation on twitter that your not supposed to do Hypertonic too close with Pulmozyme)

7:50AM- Pulmozyme
8:00AM- Tobi

1:00PM- Albuterol and Pep(Pre- Workout)

3:00PM- Albuterol and Vest(Post Workout)
3:10PM- Hypertonic (while on Vest)
3:50PM Pulmozyme
4:00PM- Tobi

10:30PM- Albuterol and Vest

Thursday, August 27, 2009

Tough times

There are some tough days you will go through when you have CF, and I've had my fair share of them. But here lately its like i've been treading water unable to get anywhere.

It's my LEAST favorite thing to do, when I post a negative topic, but honestly this is the truth of CF. Sometimes you get tired of it and you just want it to go away. And the truth is, it wont. And you definitely can't help it by not doing anything at all! (I'm talking to myself here)

I've got a dilemma here...

I HAVE a disease, there's no doubt about that, It's Cystic Fibrosis. I have to do many things daily to TREAT it. There is NO cure. If I don't do the things to TREAT CF daily, It won't be good for me.(lets just put it that way) 1,000s of people go through the same exact problems as me DAILY. 100s of thousands have it, or something else, 1 billion times worse than me.

Here's my dilemma...

We live in a WORLD were we are supposed to be politically correct and aren't supposed to offend anyone. Sometimes my coughing is loud, offensive. Sometimes me saying "don't smoke around me I HAVE CF" is offensive.

So what do I do??

I ignore my disease, push it to the side, hide it away, only deal with it when I'm alone in my room. BAD

Here's another problem, I mix the WORLD's expectations with the CHURCH's expectations.

When your not of the CHURCH, you're of the WORLD. The world doesn't want us to offend people, and to be politically correct all the time. I try not to offend people at the church either.

1.) Good news and bad news

When people of the church hear a good report its a GOOD thing. But then if you go around spreading bad news its NOT GOOD. It's offensive.

2.) Claiming the disease

Your not supposed to claim your disease as "your" disease. But I say, "If you don't claim it how will you TREAT it?"
What are you doing treatments for? uhh... Nothing.

3.) Talking about the disease

It helps me to talk to people with CF about CF. I learn a lot on what I can do less, or what I can do better. I also like to talk to my family and friends about CF. But quite frankly, people get tired of hearing about you talk about CF all the time.

So what do I do??? Again I put it away like it's not there, I ignore it, neglect my own health to make people happy, to be politically correct.

No one likes to hear you talk about how much weight you've gained or what color your spit was. They're trying to LOSE weight not GAIN.

This is just how I've been feeling lately, I know it's bad and I should forget about what people think and just take care of myself no matter what.

Please feel free to comment or message me at caseyjones343@yahoo.com and PLEASE correct me if i'm wrong on ANY of this logic! This is just how it's been presented to me lately and I really don't like it and don't know what to do about it.

Friday, August 21, 2009

Oh and By the way....I ride a unicycle!

Here's something good for all you CFers, and CF parents! When I eat, I EAT! I still ate a bowl of gumbo after this:

I was looking for something to eat...and I found some garlic bread and some ham....

VWALLA!! A 1 1/2lb Ham Sandwich!

Today I dusted off the ole One Wheeler, aired it up to 40psi, and I was ready To ROLL!
I haven't rode it in a while, I think almost a month, so I was pretty Excited!

Monday, August 17, 2009

I got my GAME on

Okay my CF bloggy Friends,

First of all, I would like to say, Thank you for all your prayers and support on my birthday Saturday! as well as the prayers and support most have you have given me throughout my entire life.(mom)

And second, I have to admit that for the past 10 days I haven't written a NO EXCUSES post, and quite frankly I haven't done anything (BOOOOOOOO!!!). BUT before you quit reading this and remove me from your following list, you should know that as of today, I got my GAME on. (Hooorayy!!)
I will continue my NO EXCUSES posts tomorrow;)

Writing a NO EXCUSES blog does take some time, and I can think of 1,000,000 reasons (excuses) not to do it. But when I read the title I know there are NO EXCUSES to bettering(if that's a word) your life. The NO EXCUSES posts help me, ultimately to stay focused, when I read the previous post I know when I did my treatments, how much I ate, and weighed....And it helps me know what I can do better the next day.

Now I will try not to BORE you with details of my daily routine, so above each post I will think of something to write, whether its something funny that happened that day, a funny picture or event, whatever comes to mind. Even me rambling on about why I do this blog:) And PLEASE, if you have any suggestions on how I can structure my NO EXCUSES better, or things I should write about, what ever you can think of, feel free to e-mail me anytime at caseyjones343@yahoo.com.

I've been Tested physically..

This MONTH, I've really felt like no matter what I do to help myself and others, It doesn't matter, no one will appreciate it, I shouldn't be doing my treatments and stuff, because when my next doctors appointment comes its not gonna matter anyways, cause I've already experienced "as good as it gets". How can my lung function possibly increase?? ya know. So I just felt like no matter what I do it wont count, so why should I TRY?

I've been Tested financially...

I've been stressed out about money for some reason, this month more than ever. God has blessed me more than ever financially, and every time I need money for something there he is with just enough, or more than I need to pay for the things I need. And with CF, most of you know Its not possible to get a decent job when your trying to keep your Medicaid, Thank God for Medicaid. Just adding up all the hospital stays, pills, treatment supplies, feeding supplies, would just be overwhelming. Having Medicaid is like receiving a gift of $20,000+ a month. So how can I complain? I am living off Social Security so that I can pay rent, car note, cell phone bill, food, clothing etc. The problem is its only $400 or less a month, and that's as high as it goes....for me. I have a $400 past due cell phone bill (over 2 months), and I just had an oil leak in my car which costs $700 to fix, and I have to pay my college $600 by the first of September, Now you tell me how I can do that with $400.

I've always been faithful with my tithe and offering, and I know that God will supply me with all my needs. Plus, How can you ever get UP if you've never been DOWN?

I've been Tested with my family....

Because I haven't been doing my treatments, I wake up cranky, I feel sick, and I really don't want to WAKE UP. Having a bad mood on a Sunday morning is not the best idea. How in the world can you go to church and praise God when before you even got out of the house, you've already broken like half of the 10 commandments??? Thank God for forgiveness.
Because of my stubborn nature I can't go to my parents for my financial or physical problems, so we haven't really been getting along...It's mostly been just me coming home, going straight to my room, shutting the door and not coming out till Sunday or Wednesday for Church.


There's good news! God has grace. I realized tonight and a little of last night that I WAS WRONG! I need to do my treatments and pills no matter what, if I have a bad doctors appointment, that should be even MORE motivation to do better next time. I learned how to take care of my finances, spreading my money around in all the areas in payments so its not so overwhelming, and most of all I learned patience, something I thought I've always had( its not the kind of patience you have waiting in the ER for 19 hours) But the kind where I have learned to talk to people instead of ARGUE, and I've learned to LISTEN! Yes that's right Casey Jones has confessed in writing that he had a problem LISTENING! Tonight was the first time I've really talked and LISTENED with my family and we are on GOOD TERMS. We're gonna go to bed and get some good rest tonight!!

So anyways, that's what has troubled me this month, some parts even longer. But I'm SOOOO glad its over and I will continue to have my GAME on from now on, I hope. lol

Saturday, August 15, 2009

Tonight at 6:33

Don’t forget. The Prayer Benefit will be tonight.
7600 Bayway Dr. Fountain of Faith Fellowship Church.
Praise and Worship will begin@ 6pm.
With God NOTHING IS IMPOSSIBLE. I would like to thank you for your prayers and thank you again for forwarding this message along so that many more voices can join us in prayer. Where there is hope there can be healing.

Romans 8:32 "He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?" NOTE - Surely this includes healing!!!

Friday, August 14, 2009

2nd letter for the Prayer Benefit

Hi everybody. . .I need your help. . . Please read all the way to the bottom. . .

My son Casey has been battling with Cystic Fibrosis his whole life. CF is a lung and digestive disorder and for those of you who are in our lives regular I'm sure you realize "He is NOT Weak." I'm sure you are accustomed to news of long hospital stays and the annual fundraiser: Great Strides. We actually got to participate this year!! Thanks everybody for all your huge efforts!! Cff.org supports The 65 Roses Foundation which is based on a touching story of a mom who had three little Cf'ers.

Many times over the past eighteen years people have offered to come together and have a benefit for Casey. For whatever reason this has never come to light, until now.

And what is a benefit except for loved ones and people you can reach getting the word out. . . passing information of the cause along. . . until the day or hour comes that we all give to support the person in need?

I know times are hard and gas is high. But, I'm sure if you have anything at all to give you can help this time.

All I am asking for is prayer.

Exodus 23:25

25-26 "But you—you serve your GOD and he'll bless your food and your water. I'll get rid of the sickness among you; there won't be any miscarriages nor barren women in your land. I'll make sure you live full and complete lives.

Daniel 9:1
[ God's Covenant Commitment ] "Darius, son of Ahasuerus, born a Mede, became king over the land of Babylon. In the first year of his"reign, I, Daniel, was meditating on the Scriptures that gave, according to the Word of God to the prophet Jeremiah, the number of years that Jerusalem had to lie in ruins, namely, seventy. I turned to the Master God, asking for an answer—praying earnestly, fasting from meals, wearing rough penitential burlap, and kneeling in the ashes. I poured out my heart, baring my soul to God, my God:


Please bind your faith with my faith for 27 minutes. Wherever you are Saturday August 15 please pray for Casey for 27 minutes. This is a Prayer Benefit.

Ask Jesus The Great Healer to heal my son.

2 Chronicles 16:12
11-14 A full account of Asa is written in The Chronicles of the Kings of Judah. In the thirty-ninth year of his reign Asa came down with a severe case of foot infection. He didn't ask GOD for help, but went instead to the doctors. Then Asa died; he died in the forty-first year of his reign. They buried him in a mausoleum that he had built for himself in the City of David. They laid him in a crypt full of aromatic oils and spices. Then they had a huge bonfire in his memory.
Where was his faith that he never even asked God for healing?
I will ask. . I believe . . . please join me. . . come with. . we will humble ourselves before the lord . . . .
From 6:33pm, the hour of his birth, until 7:00pm. You are
invited to join us at the Church in the Alters or in the Sanctuary or you can pray at your own desired location. God will hear us.

Fountain of Faith Fellowship Church
7600 Bayway Drive
Baytown, Texas 77520

We are inviting churches and congregations to bind together in this offering of faith and prayer. If you have a church of your own please ask them to bind with us this hour.
Members close to us are also fasting for faith.

After the 27 minutes of prayer you are encouraged to begin prayer for healing and change that you may need in your own life.

Faith is a measure, you will not deplete your portion. Offering yours for another is a true gift. It is an infinite blessing.

Lamentations 3:22
God's loyal love couldn't have run out, his merciful love couldn't have dried up. They're created new every morning. How great your faithfulness! I'm sticking with God (I say it over and over). He's all I've got left.

Psalm 103:3
3-5 He forgives your sins—every one.
He heals your diseases—every one.
He redeems you from hell—saves your life!
He crowns you with love and mercy—a paradise crown.
He wraps you in goodness—beauty eternal.
He renews your youth—you're always young in his presence.

As with any other benefit you will receive e-mails updates and reminders. . . please pass them on. . . please encourage everyone you know to participate in this event of compassion.

I thank you all for you participation and giving. I thank Jesus for hearing our prayers.

Thank you All!!! and GOD BLESS!!!!!
Cathy Hill
Pass It On

Tuesday, August 11, 2009

Prayer Benefit For Casey (via Casey's Mom)

The Church is: Fountain of Faith Fellowship
7600 Bayway Dr. Baytown Texas 77520.
You can also look them up on MYSPACE.
Casey also has videos at youtube.com/CaseyJones343

Casey asked me to pin a post to his blog. Cf is hard. It has no mercy. I have read Ronnie’s blog. (RUNSICKBOYRUN.com) It hit me in the heart when I read the opening line. I know exactly what it’s like to feel like you are literally running a race for life.
I know how it feels to push forward with futile efforts and have illness spin you around physically, emotionally and financially, and I know what it’s like to have absolutely nothing but one sick baby and look up to God and say, “Carry me, now.” And while I rest, the miracle begins to manifest. Not before I let go of all my worry, but when I truly lean on God, without ME. Things start to turn around. I find something to laugh about. Then I make Casey laugh, and before my eyes, through tears of laughter it starts to get better, and better and better. Jesus says “KEEP YOUR JOY “.Then a quiet realization of what it’s all about comforts me and I rest. When I awake, I am refreshed and I can move forward because as usual God has given me back my Isaac.

God expects LOVE to be held in the highest accordance. God expects us to learn to love as Jesus did. Jesus led, by the finest Most Holy Example.

"Who his own self bare our sins in his own body on the tree, that we, being dead to sins, should live unto righteousness: by whose stripes ye were healed."
1Peter 2:24 KJV

"But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed."
Isaiah 53:5

I learned not to ask, “Why me?” a long time ago. I don’t ever let myself go there in a negative whiny way but, I ask sincerely “why me?” God must have an indelible place in his heart for me. I think of Joseph. Man. . . , Joseph really was honored by the Lord to be able to raise Jesus from birth.

But, I look at this high honor. God, has chosen me to rise up this Brave and strong little Warrior this Huge Vessel who has been chosen to harvest souls from around the world.

This guy has been blessed time and again by what could only be the hand of God. Angels, have come forward and glory has reigned across the lifetime of this fierce WARRIOR, this WINNER.

I know the battles get to be very scary and it can feel like there is no other side . . . but ask God to carry you, he will. He wants to. Don’t wait for times of frustration. Keep your peace about you. I know my Soldier will be An Outcry of Victory for the Kingdom of God and God has given me Faith . . . that I do not have to ration.

"And Jesus said unto them, Because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you."
Matthew 17:20

August 15th is Casey’s 19th birthday and we are having a Benefit of Prayer service at our Church. From 6:33pm to 7:00pm we are going to be releasing prayer for the manifestation of Casey’s healing. (I don’t care if you call me crazy God has already healed him in Jesus’ name.) You don’t have to visit the Church to take part in this service. We would love to have you but if you can’t make it that’s okay. Please raise your voice to the Lord; he will hear your prayer, wherever you are. I encourage you to start praying at 7:00 for your own healings. Ask God to heal your shortcomings, ask God to heal your heart for any unforgiveness you may harbor, ask God to save your loved ones so that they may join the Kingdom and have everlasting life. Pray for your enemies. Ask God to be your watcher and keep you on the straight path that causes you to rejoice in the good and bad because WE ALL ARE BLESSED!!!! We cannot complain. Jesus died for us that we may love and be obedient and LIFT UP HIS NAME!!!! Whatever you need no matter how huge or no matter how slight God can fix the messiest messes. Just talk to him. Read His word; believe His promises in your heart.

So SAVE THE DATE: AUGUST 15, 2009. 6:33pm to 7:00pm Pray for Casey
From 7:00 pm to whenever- Pray for yourself your loved ones your neighbors or whoever needs Jesus. God will hear us. We are Blessed. Between now and then spend time with your loved ones so they may know you love them.

Spend time with God so you may know He loves you, and your messes no matter how huge or slight can be forgiven as easily as talking to your Father.

When Jesus saw their faith, he said unto the sick of the palsy, Son, thy sins be forgiven thee.
Mark 2:5 KJV

Saturday, August 8, 2009

A day off??? HA! I don't think so!

No Pictures or video today, sorry! PLEASE READ ALL THE WAY.

So Thursday night I posted the "Ugh" post, and that night after I posted it I began to pray to the Lord to show me something, to give me a reason to wake up in the morning, because I was really feeling down. I would wake up very late in the day and go to bed very late at night and I had no energy to do anything, and I didn't like it. So the next morning I woke up, GUESS WHAT TIME? 7:00am! That's AM! My cord to my pump came unhooked in the middle of the night so my Ensure leaked all over me and woke me up.

So there I was WANTING to wake up early, NEEDING a reason to get up....and I GOT IT! lol

The Lord works in mysterious ways!

Then I got up and did my treatments, did my chores, walked my dog, ALL BEFORE 12pm! Then later that afternoon I got a call from my cousin and she asked me if I wanted to go with her to "Cecil's Backyard" which is a man made hole in the ground filled with water, and a 20ft diving board, zipline, and slide. No one ever goes on the slide, now keep in mind, this isn't a slide that takes you all the way to the bottom...this slide is only about 4ft long and from then on it drops you.

Me being the "brave" one, I decided I was gonna slide down the slide, Bad Idea.(I will provide pictures and video as soon as I get them)

As soon as I got on the slide, my cousin tells me, "hey, hold your button! It might pop out when you hit the water!" And me being the stubborn one, didn't pay any attention to her. I slid down that slide and as soon as my body left that last hump, it was too late for me to hold anything, MY FACE and STOMACH hit the water at approx. 10mph. My button was gone.

Buttons don't float.

Cousins are right.

Don't go to Cecils.

These are 3 things I learned that day.

Another thing I learned that day was....
Something that has really been eating at me(and I found the answer to), was my question in the previous post, Why can't I just have a day off??
And what God was showing me through these series of unfortunate events was, The truth is...You don't get a day off! You have to do your treatments, pills, and exercise every day. CF is just another responsibility, you HAVE to take out the trash, you HAVE to feed the dog, you HAVE to do the dishes, even though you don't WANT to, you still HAVE to do it. Just like with CF, you HAVE to take care of yourself! God gave me 3 events that day showing me that CF is there, I can't ignore it, I can't take it away(he can, I can't) It's just another responsibility for me, and many others. We just have to continue on and count our blessings. CF is a blessing, it's not a curse. We are able to talk to SO MANY people because of CF, and get through to them. Where as others can not do that. We can use it as a tool to witness, to help people in need, to provide encouragement, I mean the list goes on and on.

The main thing God has shown me is to NEVER let yourself think you can't do something because of a minor set back called CF. Don't let that get in the way of what he can do for you, and what you can do for others. Don't sell yourself short, or think your not good enough.

I want everyone to know where I stand, and what I believe in. I want to see the lost saved. There is a very REAL place called heaven, and there is a very REAL place called hell, it's your choice to decide, Jesus is not your acquaintance, he's not your occasional savior, he's not your "Christmas and Easter" God, He's your almighty God, and he loves you no matter what. There is not a day that goes by that I wont thank him for the breath of life, that first breath in the morning, and the blessings he has poured out on my life.

I want to encourage EVERYONE to leave comments, I would love to hear your opinions, or stories of times when God has blessed you, It really encourages me and lifts my spirits when I hear about the things God has done in others lives. Thank you:)

[Oh, and P.S. My computer got hacked and someone stole my product key for my windows vista, now my computer doesn't work and I am using my moms until I can get it fixed, so I may not be able to update my blog EVERY day, but I will try. Thanks again.]

Thursday, August 6, 2009


Hey everyone! Today was a so/so day, since my doctors appointment....(and everytime I have a good doctors appointment) I go into this lazy/distracted/my report was good so now I don't have to do anything phase. You know? And today there is NO EXCUSE for missing 2 treatments, not working out and missing my pump last night. The only person to blame is ME!

What I wanted to know is:

Is there any other CFers who do this? You get a good report, or you finally start feeling better, and this SHOULD keep you motivated to stay on track, but instead you feel like "ahhhh!!! Why Can't I just have a day off???"

Please comment me or email me and let me know if you go through it, or what you do to get out of it...Thank you!

On the other hand, Today I did invent a good food Item for CFers out there if you want to get 1,450 calories, and you have a good appetite.

I was sitting around the house and thought, "hmmm...What would go good on this ham sandwich?" "I KNOW!! A CHEESBURGER!!" lol

So here's My Cheesburger Ham Sandwich;)

Wednesday, August 5, 2009

One day of rest....Now I'm back to my workouts! (or not)

After a week of pushing myself EVERYDAY to get up in the morning, eat breakfast, do my treatments, workout, and EVERY NIGHT going to be BEFORE 2am.......I had to have me a little bubble bath.

Right after my bath I was back to work on my treatments, then I got ready for todays P90x!

Today was a Cool 102 degrees, plus the 100% humidity, it felt like 112 degrees! Working out in these temperatures will just not work, Bad Idea. So, I decided to wait until it cooled off more.

And I waited...and waited..

Until 4 hours later....and the temperature went UP! All the way to 110 degrees. It wasn't until 6 o'clock the temperature dropped to 105. I guess I'll get my workout after Church;)

In other news......

From a comment posted earlier today,

"Casey, I thought I was your favorite nurse, what's up with "Brooke"....... See if I bring you I-Hop again...
Looking great....keep it up..."


I would like to spotlight my favorite MALE nurse, His name is Floyd. When I'm in the hospital he is nice enough to bring me breakfast, because he says he gets paid by the pound! He also knew I loved the Astros and sent me this autographed hat!

Autographed by Craig Biggio

So here's to you Floyd, Thanks for being there for me when I was sick & may God pour out blessings upon you!


Twitter has a new addition to its gadgets called TwitVid, where users can share videos about....ANYTHING, to all their twitter friends.

I just wanted to share with you, My first TwitVid & here it goes:

-Over 300 pictures
-1 Hour to Film

-4 Hours to edit
-33 seconds to watch:)

I hope you like it...
It is a shout out to that Baytown band called LEELAND!! lol

Here's a picture of what we call the OWNERSHIP PAW:)



3 pancakes w/ Jelly- 1,040calories
2 Sausage Patties- 400calories
Bananas & Oranges
1 Ensure- 350calories, 13grams of protein

2 sandwiches- 700calories
2 Ensure- 700calories, 26grams of protein

3 Ensures:(- 1,050calories, 39grams of protein




No P90x today, because it's a rest day(yes!!), so I took my nephew for a bike ride for about .3 miles then I rode my unicycle with him for a while.

8:00am- Albuterol & Pep

11:00am- Albuterol & Pep

6:00pm- Albuterol & Vest
6:10pm- Hypertonic Saline
6:30pm- Pulmozyme
6:40pm- Colistine
7:00pm- Flovent

(I missed my night treatment today.)

Tuesday, August 4, 2009

Update on my Doctors Appointment

Today I had a doctors appointment....

(Drum Roll Please)

And it was GOOOD!
The only better way I could tell you, Is to SHOW you so I made ya'll this video:

My doctor said an increase like this, WITHOUT a hospital stay is RARE! And I say, God is GOOD!!!! I'm believing 100% that it will continue to get better. I want every CFer or CF parent that reads this blog to know that it WILL get better & God will be there to help you through it, Just "hold on".

-Okay, ok.. Done preaching for tonight....

Here's me after I got punctured by the best "blood drawer" in the world! She was great, she got it on the first try(and that is awesome!), but unfortunately I wasn't able to get it on video. I did get me drinking my OGTT syrup!!

Random Question Of The Day:
Don't you just hate it when your enzymes spill in your backback, (or for the ladies your purse)????

Now I gotta sift through 200 enzymes to find a pen to write this stuff down!! and my enzymes taste like pennies!!(GROSS!!!)



(none)- due to OGTT

3 chicken strips- 450calories
1lb of BBQ chicken- 600calories
French Fries-350calories
1 liter of sprite(I was thirsty!)
3 ensures- 1,050calories 39grams of protien

1 bowl of spaghetti-400calories
2 ensures- 700calories, 26grams of protien

6 ensures- 2,100calories 78grams of protien



P90x Day 6- Kimpo Karate X
This is a fun exercise and it is a excellent cardio exercise!


7:00am- Albuterol & Vest
7:10am- Hypertonic Saline
7:30am- Pulmozyme
7:40am- Colistine
8:00am- Flovent

2:00pm- Albuterol & Vest

5:00pm- Albuterol & Pep

10:00pm- Albuterol & Vest
10:10pm- Hypertonic Saline
10:30pm- Pulmozyme
10:40pm- Colistine

Monday, August 3, 2009

Whew....Long day!

Hey guys, or just guy....because I know only one person reads my blog(haha). I PROMISE I am doing my treatments and exercise!!! But today I had a LONG day, It started with a 6 hour doctor visit and I will give you all the details plus a video on that tomorrow, but for now...GOODNIGHT!

Sunday, August 2, 2009

Happy Birthday Alexandria!

Today is one of my CF friends, Alexandria's Birthday!!! And in honor of that I would like for everyone who reads my blog to go on over to her blog(by clicking her name) and show her some blog buddy love!

She has CF, buy like myself and MANY other CFers she always keeps a positive attitude towards it and in her blog she explains how CF has "blessed" her!!

She also makes videos like this one:

She's a very nice person, and everyone should meet her, and of course, TELL HER HAPPY BIRTHDAY!!!

Gifs at Giftube.com

Yesterday I was unable to do my NO EXCUSES post because I was forced to do a nightly workout because I came home late, and as soon as I got done I was pooped! I have to manage my time better on Sundays

So here it is:



Donut Holes(someone told me they were 1,000,000 calories..)
2 ensures-700calories, 26grams of protien

2 ensures-700calories, 26grams of protein

4 ensures-1,400calories, 52grams of protien



...I know I did pretty pitiful on eating today, No pump tonight I have to Do my Oral Glucose Tolerance Test tomorrow!


Day 5 P90x- Legs and Back
AB Ripper X


After my meds today I took my shower and got ready for an awesome time at church!
On sundays and wednesdays when I have church I rearrange my treatments to fit my schedule. I know that I will come home late after a night of service so I do my Long Treatments before and in the middle of services, I do my Inhalers during services to save time.

7:00am- Albuterol & Vest
7:10am- Hypertonic Saline
7:30am- Pulmozyme
7:40am- Colistine
8:00am- Flovent

1:00pm- Albuterol & Vest
1:10pm- Hypertonic Saline
1:30pm- Pulmozyme
1:40pm- Colistine

7:00pm- Albuterol & Pep

10:00pm Albuterol & Pep

Saturday, August 1, 2009

What Keeps Me Motivated?


There are tons of things in this world that should motivate you to get up off you "hiney" and do something, whether it's a person, or someone saying Just the right words.

Today my motivation goes out to a guy named Bob Wieland, who lost his legs in Vietnam, but never thought twice about it, he has lived his life for God since then, breaking weight lifting records, even walking across America on his ARMS! Spreading the Gospel the whole way, he is motivation as well as inspiration for me not to ever give up! "It's too soon to quit!"-Bob Wieland

Those are 5 words that go through my head and give me that boost to go the extra mile!! Bob Wieland this is a shout out to you, Your a great guy!

Bob Wieland

For more information on Bob Wieland, Click his name above to watch his video.


2 bowls of cereal- 600 calories
Ensure- 350calories, 13grams of protein

2 bowls of Ramon noodles- 380calories
Chicken Breast- 400calories
3 ensures 1,050 calories, 39grams of protein

1.4lbs of Hamburger meat w/BBQ sauce, (no bread)- 1,733calories 140grams of protein
2 ensures- 700calories, 26grams of protein

6 ensures(on milk drip)- 2100calories, 78grams of protein




Day 4 P90x- Yoga X
"what a coincidence!"(cystic gal)

8:00am- Albuterol & Vest
8:10am- Hypertonic Saline(while on vest)
8:40am- Pulmozyme
8:50am- Flovent
8:57am- Colistine

1:00pm- Albuterol & Pep

5:00pm- Albuterol & Vest

10:30pm- Albuterol(inhaler) & Vest
10:35pm- Hypertonic Saline
10:55pm- Pulmozyme
11:05pm- Colistine