aCASEYofCF

New Video

2011-02-25T11:42:00.000-08:00

Hey!! Here is a video of me singing along with Chris Tomlin's "No Chains On Me". I really like this song and hope that you will too! Enjoy!

Notice I had my purple shades on;)

Thanks For Watching!! Have a good day and God Bless You!!

Help me raise awareness!!!

2011-02-15T13:10:00.000-08:00

Hey Guys and Gals!

My name is Casey McPhail, I also have CF as most of you already know.

Recently I realized that there is a purpose to having CF and I began to look at life differently, no one gave us CF and we didn't ask for it so there must be a purpose somehow, someway. So instead of getting mad because I have CF, or getting mad at God, or trying to ignore it and hope it goes away, I decided to run with it, not letting it run my life but raising awareness, helping others, getting involved and ultimately working to find a cure in whatever way God allows me.

So for my, or OUR first project I would like to create an awesome awareness video and with your help we can make it happen.

If you are interested here's what I need you to do.

Record yourself quoting the script below:

Please make sure you get a good shot with good sound and if you record with your iPhone or android phone make sure you do it in landscape and NOT portrait mode, also on a desk or tripod would help too. We want to make the video awesome!

Hint: it's easier to say if you record it in sections.

Please record a few seconds of you just looking around slowly or laughing (these will be fore the beginning and the end of the video).

Script-

*"There are 30,000 people on the earth living with cystic fibrosis and growing.*

People who are just like me.

Faced with daily challenges of life AND Cystic Fibrosis.

But there IS hope.

Together WE can make a difference.

Together we can LIVE longer.

Together we can live STRONGER.

Together we can find a CURE.

*Over the years through the Cystic Fibrosis Foundation and many other organizations CF research has more than doubled the lives and life expectancy of those effected by Cystic Fibrosis.*

*So with Your help, together we can raise awareness and make CF stand for Cure Found;)"*

END

And if you would like to put your own thoughts that would be great too.

Thank you Guys and Gals so much for taking your time to read this email.

Please email me back and let me know whether or not you are interested. If you know someone who might be interested please forward this email to them, the more the better, I only have a few CF contacts.

**send all videos to caseyjones343@yahoo.com***

Or if you upload it to YouTube send me the link, I can get it, then you can delete it if you want after that.

Thank you so much, God bless you!

-Love

Awesome Day:)

2010-10-13T17:27:00.000-07:00

So today was AMAZING! Got some good news to tell you!

First, my PFTs were UP UP UP!!! Fev1 71% and Fvc 84%, which is up 30% from a week ago. Maybe I should explain why my PFTs were so low last time before everybody freaks out...

Okay, so 3 weeks ago I was ordering my medicines and the pharmacy informed me that my medicaid TERMED! Which meant I had NO INSURANCE...NO MEDICINE!! So I immediately got on the phone with the medicaid company and tried to work it out. Long story short, they said they couldn't help me because I was over 18 and I would be eligible for Medicare May 2011, 6 MONTHS FROM NOW. So I had a doctors appointment and from 3 weeks of no meds my PFTs, as expected, were DOWN to 40% Fev1.

Second, everything is getting worked out and GOD IS GOOD!! My social worker is helping me get some free meds until I can get it straightened out, and this hospital stay will be a charity case.--GREAT NEWS!!

Third, I have had an awesome day with my friends I met this week through a ministry at my Church called Inside Out. And I have got to spend a lot of time with them this week while in the hospital. They live under the bridge here in Houston. I have never met anyone like them before, they have so much integrity and love for each other. They really know what it means to share and look after each other. We had a great time praying and sharing the word together. OH! and I caught a Catfish!!

God has really shown me what it means to Pray Sincere lately. Like not praying for the hungry if you're eating out everyday. I can't pray for the homeless and the people who are down and out if I'm not willing to walk a mile with them, put down my wants and my needs and live in the environment that they live in- even if I have CF! So today one of my friends(Terry) came and visited me all day while I was in the hospital, meanwhile one of my other friends was trying to fish. Terry must have been up here for 5 hours when he decided to go check on the other guy. So we both rode the train over to the bridge by the river. The guy didn't catch anything! I told him if we ask God to bless the line, he will, and we will have us a fish to eat! As soon as I touched the line I got a bite, pulled it up and there was a nice sized catfish on it!! Praise the Lord!!! It really meant a lot for them and opened my eyes that we worry about what clothes we'll wear or what car we'll drive or the latest cell phone and there are people right outside our doors that have no idea if they will even eat tonight. I want God to break my heart for THOSE people. I want Him to give me the compassion and love that heals the sick, feeds the hungry and shelters the poor.

Here are some pics from today!!

He was a little bit afraid of the fish:)

Scissors always help:)

Terry is teaching us how to cut up the fish and use some parts for bait.

GROUP PICTURE!!

And Fourth, I am possibly getting out of here Friday, so I am excited for that!!

I hope this post has blessed you and inspired you to take a look around your community and see with God's eyes people who are just like you and me who need the love of Jesus. The Church in Acts was a family, everyone shared and loved one another, when you love one another the way Jesus intended it to be, that's when a movement begins. Let's start a movement together, a prayer movement, a SincerePrayer movement. Let's keep it going!!

Matthew 28:19-20 "Go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age."

HELLO EVERYONE!

2010-10-11T13:49:00.001-07:00

Oh wow. It has been a long time. Hopefully people still read this thing, if not oh well, at least I get to get something off my chest.

So a lot has happened since the last time I was on here. I graduated bible college and started working at my church. Right now I am in the hospital and I'll probably be in here for a couple of weeks. I want to get up to 150lbs at least. I've been spending a LOT of time in prayer and in the Word. God has shown me lots of new things and revealed to me amazing truths. He really has made me a new creation, and given me a new heart-His heart. All along I have been claiming to be a new person but 1John talks about if you don't know Love then you don't know the first thing about God because God is Love.

When I found this out I was pretty concerned- Not knowing God?!?! That's a big deal, I mean were talking about my eternal state here. So for weeks I would cry out to God and ask him to take over my life and change me. And on August 7th, 2010 in the hospital I layed on my back for 3 hours while God poured his Love out on me. He showed me who He really is. This God has a big Heart, He created every single one of us and desires to have an intimate relationship with all of us individually. He Loves the WORLD. I mean go check out John 3:16. But I didn't love the world. I loved Casey, I was concerned about others but I didn't Love them. I wanted God to bless me so I could be somebody, not so I can glorify Him. I thank God for giving me a heart for the world, because EVERY believer is called to the world. The reason why 1.4 billion people have never heard the name of Jesus and 26,000 children die everyday from preventable diseases and starvation is because His disciples aren't doing their Jobs. I refuse to sit back and be ordinary, I'm determined to be RADICAL.

This brings me to my next subject, The Radical Experiment.

Experiment: a course of action taken under controlled conditions in order to test a claim.

Living a life of a disciple isn't easy, Jesus didn't promise that. Matthew 10 explains that the life of a disciple is dangerous at best. Over the next year I am committing to 5 things...

1.) Pray for the entire World- there is a website called www.OperationWorld.org which provides specific information on Countries in great detail of what to pray for.

2.) Read through the entire Word- No matter the conditions I will read everyday until I finish the entire Bible.

3.) Sacrifice my money for a specific Purpose- Not just the general "poor" but a specific need in my community.

4.) Spend my time in another context- Over the course of a year I will spend at least 2 weeks in another environment and share the Love of Jesus.

5.)Commit my life to a multiplying community- in Matthew 28 Jesus commands us to go out in the world and preach the Gospel, teach obedience and make disciples, I will make disciples!

These Challenges as well as a ton of great information are explained in detail in the book Radical by David Platt.

THIS IS WHERE YOU COME IN! -If your willing, I would like to pray for every person specifically that has Cystic Fibrosis. It could be general or it could be personal. But everyday I will commit to praying for all my Cystas and Fibros. So if you will, my email is caseyjonese343@yahoo.com, send me and email letting me know what to pray for, and I can send you my phone number and pray with you directly too, if possible.

You see the life of a disciple and the life of a CFer doesn't mix. CF is designed to keep us down and out all the time. That is not God's will, God's will is that we are HEALED COMPLETELY. So we can bring Glory to his Name and fulfill what he has called us to do.

I am believing for complete healing for your lives and mine. I'm already taking some Radical steps in pursuit of being totally free from the bondage of Cystic Fibrosis, I'll explain a little bit later. So send me a message if your interested, and leave me a comment on what you think about this post- Good or Bad, I'm an open guy. But hopefully good.

God Bless!

Holidays in the hospital!

2010-01-03T07:55:00.001-08:00

Hey everyone!! Man I miss being on here!! So what is going on in Casey Jones life?
Well today I'm in the hospital, I'm getting out tomorrow!!!! 2 weeks ago I had a doctors appointment and my lung functions increased 9%, but from a previous 20% drop, it was time to come in for a tune-up;)

When your in the hospital it can be two types of experiences; Good or bad.
When I'm in the hospital I try to make it awesome and with my friends and families help it always is!

On Christmas my family came over and spent the night with me, my youth pastor brought me all kinds of decorations for my room and we had a photobooth!

On New Years we had decorations and a dance party It was fun!!!!!

All hospital stays, even HOLIDAY ones can be Fun!

So thats my holiday update, Sorrry it's so short, I'm exited to get out tomorrow!! And I'm pumped for 2010!!! God Bless You, and leave lots of comments!!!

With God everything goes higher!

2009-11-11T15:06:00.000-08:00

Hey everybody, God is doing so much in my life right now i've got so much to say about what he's doing and what I'm doing. As of right now I'm on a buss about to head over to Katy church. Last week we had road to emmaus, which was an amazing experience! I'll have to show you guys pictures on that and tell more about it when I get to a computer. Anyways my pft's a great and the only direction they can go is up! Becaus with God everything goes higher!! So I had a Dr's appt. This past Monday and, My fvc is 83% and fev1 is 72% and I gained 3lbs. Thanks everyone for your prayers, God is great I love you guys!! Remember Mark 9:23 " everything is possible for him who believes." that's straight from Jesus Christ himself!!

NOTHING IS IMPOSSIBLE!

2009-10-12T19:01:00.000-07:00

Today I was talking to my friend Ronnie and he was telling me anything is possible with God as long as you havve faith, even as small as a mustard seed!!

So I went to my doctor and asked him if I could go home Thursday or Friday, he said no. I said well I believe my dads salvation depends on me being at this mens advance at school, because if not he won't go. He said we'll see about Friday night or Saturday morning, I said okay so I went back to my room to take a shower.

When I was in the bathroom I was praying to God to let me out early so I can make the mens advance, God asked me, if I let you out what are you gonna tell everybody? I said I'm gonna tell them that I pulled some strings and got the doctors to let me out. God said No. Don't tell them that, tell them I let you out. I said okay.

As soon as I got out of the bathroom the nurse walked in with a kart and said pack your stuff up the picc line team is on their way to take out your picc, the doctors signed the orders, call your mom to pick you up!!!

Today wasn't even in the picture!!! I was in here for a 10-14 day minimum!! Today is day 5!!!!!!!! That's God!!! I'll tell you obedience and faith in God will accomplish anything!!!!

HEALED IN THE NAME OF JESUS!

2009-10-11T22:03:00.000-07:00

Today I was reading in Job and I found out two things:

1.) The devil has to ask God for permission to tempt us.

2.) When challenged with sin it could be as easy as saying, Lord I will not sin against you, devil you lose!

This was a revelation to me because I realized when we chose to sin we chose to let the devil win athourity over us, which is a lie because we are WARRIORS so we walk in the athourity of Jesus with our shoulders broad!!

Also I am reading in Smith Wigglesworth, Ever Increasing Faith, and it said according to matthew 12:44 if you are healed, and you continue to willfully sin, you will be far worse off than you were before! After this I had to pray that I had not been fully healed;)

I now have something to say against my flesh that desires to sin and the devil; "I will not sin against you Lord, devil you lose!"

I do believe 100% that I have been healed from cystic fibrosis and MANY MILLIONS will be saved and changed by the testimony! So Monday I am going for a sweat test to prove it.

In other CF related news:

I've gained 10lbs in 5 days and my right lung is clear after being clogged my while life, which further proves my healing!

Father God I pray that everyone who reads this doesn't in any way think that I had anything to do with your healing of CF, that ALL the glory goes to you and when I get that doctors notice that says CF NOT FOUND, that faith begins to increase like never before and millions will be saved to join you in the kingdom of heaven, and I thank you that your word says, "your will be done, on earth as it is in heaven" which means we don't have to wait for heaven to walk in health! In Jesus name: amen.

TBI update: what I've learned during week 1

2009-09-24T17:47:00.000-07:00

Okay so here's the deal...
God showed me something today, it started out this week learning that if I want a question answered I need to search for it myself in the bible.

Sometimes we go through life never questioning things like why is a hamburger a hamburger when it's made out of beef? Well if you searched for that answer you would find that the "beef burger" originated in hamburg Germany.

We as Christians go through life with our "problems" and when we need help we ask man for the truth, instead of reading THE REAL TRUTH. (if you think that's good, we haven't even started cooking with fire yet..)

I've never been one to read the bible without being told to by a youth pastor or when I opened it for Sunday and Wednesday services. But today was a new day, I wanted answers, so I opened my bible for them.

I opened it up to Mathew, where Jesus told Peter(then called Simon) and Andrew to get out of the boat because he would teach them to fish, not for bass, but women and men.
Then he went to two others and said leave your father, come with me I'm going to teach you how to fish, not for bass, but for women and men. They followed him. Before long here were so many people that followed him that he had to stand up on a rock so everyone could hear him preach. The bible says that right then, he healed one, he healed ALL.

Now that's something that showed me that not only Jesus heals, but he heals ALL.

Then Jesus goes on preaching about how we are blessed...
(I will paraphrase)
He says we are blessed because we care for nothing more than we care for God. And we are blessed because we have lost what is most important to us, so we can focus on what IS most important to us.

That's great right?

Well then I started believing and my faith began to rise because I was reading the REAL TRUTH, the word of God for answers. So then I remembered something one of my pastors at my church, pastor Jack, told me on my birthday when praying for healing...

He told me that Jesus took 39 stripes on his back for the orginal diseases and the ones that spawn from those, so by those 39 stripes we are HEALED! Then when Jesus died, he rose up out of the grave on the third day, went to hell, grabbed the keys to death hell and the grave from the devil, opened the gates of paradise, set the captives free, and took them to heaven with him. When Jesus got in heaven, he sat down, symbolizing that his job was DONE, COMPLETE, FINETO!!
There was NOTHING left to do. All your worry (which I learned today that worry is temporary atheism) doubt, fear, sickness, hunger, EVERYTHING has been taken care of. God's got you covered.

Being a believer means we now that everything in the bible is 110% true. So if it says in Isiah 53:5 that, by his wounds we are healed, then WE ARE HEALED. now does it say that? Well you'll just have to find out for yourself.

So I began to cast out cystic fibrosis in the name of JESUS go back and look at those two names, which one is bigger? I'm sure it's JESUS) before I knew it I got lost in the spirit and lost track of time and when I looked at the clock it was 6:58, church starts at 7:00, so I had to run to the ambassadors hall, but when I walked into the building I experienced God like never before. I began to pray and accept a full healing, crying like never before (the ugly kind). And the service was awesome pastor Andrew preached and tied in golfing with using gifts God has given you. You have the power to heal, raise people from the dead, all you have to do is let Jesus be your caddy and learn to listen for the tools to unlock those gifts.

After service I had one of the best talks with my dad about God!! That's an answered prayer right there!!

God really showed me this week that if you seek, you will find, if you have a sincere need, he will meet it, if you need healing he will do it, if you need answers open up his book and he will show them to you!

Anyways I love all you guys, thank you so much for your prayers and one more thing, COLLEGE IS GREAT!!

Starting college Saturday!!

2009-09-10T10:32:00.000-07:00

Hey everyone this is Casey, I'm blogging from my phone--something that I will be doing for a while since I won't have my computer.

I've got some good news for ya!
I start college this saturday September 12th. I will be in a dorm with 3 other guys 2 hours away from my house:) as far as I know i will be the first "CFer" to live in a dorm, now I know that can't possibly be true so if you, or someone you know who has cystic fibrosis lives, or has lived in a dorm let me know, because I would be glad to hear about it. I'm sure it will be an experience of a lifetime and it will be a lot of fun.

My college name is Texas Bible Institute and is located in Columbus TX. I will update my blog as often as I can with new info on what God is doing, as well as videos pictures etc.

Thank all of you for reading and feel free to message me anytime, you can find my email anywhere on my site!

Surprise going away party!

2009-09-07T20:00:00.001-07:00

@charity_Pardue and @goose1344 planned an awesome going away party for @caseyjones_cool, it was awesome!

Tuesday, September 1st. 2009

2009-09-01T20:53:00.000-07:00

Today I found the most amazing website ever that will save me a lot of time on my NO EXCUSES posts. The only thing is, I don't know of a way to copy and paste the chart so I can put it on my website to show what I did for exercise and what I ate. So I will have to Post the link instead.

livestrong.com is a website that you can use to track your daily calories, weight, exercise, goal weight, and tons of other stuff. Its extremely helpful to us as CFers and CF parents, because we have to track these things daily for improvement.

NO EXCUSES:

Here's the link to my page at livestrong.com where you will see my calories and exercise for today.

GOAL WEIGHT: 150lbs
CURRENT WEIGHT: 132.6
TREATMENTS

9:00AM- Albuterol & Pep

5:00PM- Albuterol & Pep

Today I didn't do too good on my treatments, or eating a lot. I mostly slept all day. I will have to do DOUBLE TIME TOMORROW!!!

Money Mayweather

2009-08-31T19:18:00.000-07:00

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.

NO EXCUSES!

FOOD

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

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

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

6 Ensures- 2,100calories 78grams of protein

TOTAL CALORIES: 4,630
TOTAL PROTEIN: 175

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 132.6lbs

EXERCISE

30mins of Jump Roping
.2 miles on my bike

TREATMENTS

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

Back at it!! (FOR REAL THIS TIME)

2009-08-30T12:53:00.000-07:00

So...
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.

NO EXCUSES!

FOOD

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.)

THAT WAS JUST A JOKE, I BRUSH MY TEETH! lol

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

Dinner-
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

TOTAL CALORIES: 5,630
TOTAL PROTEIN: 144

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

EXERCISE

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

TREATMENTS

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

Tough times

2009-08-27T20:45:00.000-07:00

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.

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

2009-08-21T12:21:00.001-07:00

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!

I got my GAME on

2009-08-17T23:41:00.000-07:00

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.

BUT! BEFORE YOU THINK THIS IS A POST ABOUT COMPLAINING!!

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

Tonight at 6:33

2009-08-15T06:00:00.000-07:00

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!!!

2nd letter for the Prayer Benefit

2009-08-14T10:40:00.000-07:00

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:

THIS IS WHAT YOU CAN DO:

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
Thebaytownchurch.com

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

Prayer Benefit For Casey (via Casey's Mom)

2009-08-11T21:09:00.000-07:00

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

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

2009-08-08T21:21:00.000-07:00

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.]

Ugh.

2009-08-06T19:03:00.001-07:00

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;)

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

2009-08-05T10:26:00.000-07:00

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..."

-Floyd

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!

TwitVid?

2009-08-05T06:27:00.000-07:00

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:)

NO EXCUSES!!!

FOOD

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

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

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

TOTAL CALORIES- 4,240
TOTAL PROTEIN- 78+

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 132.7

EXERCISE

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.

TREATMENTS
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.)

Update on my Doctors Appointment

2009-08-04T16:50:00.000-07:00

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!!!)

NO EXCUSES!!!

FOOD

Breakfast
(none)- due to OGTT

Lunch
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

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

6 ensures- 2,100calories 78grams of protien

TOTAL CALORIES- 5,650
TOTAL PROTIEN- 143+

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 132.6

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

TREATMENTS

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

Whew....Long day!

2009-08-03T21:26:00.000-07:00

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!

Happy Birthday Alexandria!

2009-08-02T12:06:00.000-07:00

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!!!

HAPPY BIRTHDAY ALEXANDRIA!!!

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:

NO EXCUSES!!!

FOOD

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

Lunch
Spaghetti-600calories
2 ensures-700calories, 26grams of protein

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

TOTAL CALORIES- 2,700+
TOTAL PROTEIN- 104

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 131.7lbs

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

EXERCISE

Day 5 P90x- Legs and Back
AB Ripper X

TREATMENTS

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

What Keeps Me Motivated?

2009-08-01T06:07:00.000-07:00

WHAT MOTIVATES ME?

PEOPLE LIKE THIS:

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.

NO EXCUSES!!!

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

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

Dinner
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

TOTAL CALORIES-7,313
TOTAL PROTIEN-296

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 134.6lbs

EXERCISE

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

TREATMENTS
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

2009-07-31T22:09:00.001-07:00

Update on the Astros Game!

2009-07-31T20:49:00.000-07:00

Today I managed to finish a slideshow of the pictures from the astros game I went to last Friday.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
I HAD TO POST IT UP THERE!

I was doing my vest today and got a phone call from my favorite nurse Brooke!! She reminded me that I have a doctors appointment this monday and I'm due for my annual Oral Glucose Tolerance Test, or OGTT. I am so exited for my doctors appointment coming up! It's the first one in a long time I can't wait for, I'm READY!!!

I've gained about 10lbs since the last time I went and I feel pretty good about my lung functions, but I'm not getting my hopes up. As I always say, "Lets hope for the best, and prepare for the worst."

I also learned that a morning workout is 100x better than a night workout, or mid-day workout, because as I go through the day I put off my workout more, and more. I realized it's better to go ahead and get it over with in the morning. So today is the end of the nightly workouts and I will get up bright and early at 7am to start my routines.

I will eventually get into the habit of going to sleep earlier and waking up earlier day by day, in 1 hour increments. Today go to bed at 12am, wake up at 7am, tomorrow go to bed at 11pm and wake up at 7am, the next day go to bed at 10 wake up at 6, until I get a steady pace of going to bed at 9 and waking up at 5am.

Thats all I got for today here's my NO EXCUSES for ya!

NO EXCUSES!!!!

FOOD

Breakfast
Cereal x2-600calories
Ensure- 350calories, 13grams of protein

Lunch
Mashed Potatoes and Noodles- 1,200 calories
2 Ensures- 700calories, 26grams of protein

Dinner
Chicken Breast- 400calories
Ensure- 350calories, 13grams of protien

6 Ensures(on milk drip)- 2,100calories, 78grams of protein

TOTAL CALORIES-5,700
TOTAL PROTEIN- 130

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 131.6

EXERCISE

P90x Shoulders and Arms

Warm Up- 10min
Alternating Shoulder Press- 10 w/ 20lbs
In & Out Bicep Curls- 10 w/ 20lbs
Tricep Kickbacks- 10 w/ 15lbs
REPEAT & STRETCH

Deep Swimmers Press- 8 w/ 15lbs
Concentration Curls- 8 w/ 20lbs
Chair Dips- 45sec
REPEAT & STRETCH

Upright Rows- 10 w/ 20lbs
Static Arm Curls(light weight)- 8 w/ 15lbs
Flip Grip Tricep Kickbacks- 10 w/ 10lbs
REPEAT & STRETCH

(wow! only 24 minutes to go!)

Seated Shoulder Flys- 10 w/ 15lbs
Crouching Cohen Curls- 8 w/ 15lbs
Lying Down Tricep Extensions(my favorite!)- 10 w/ 15lbs
REPEAT & STRETCH

Straight Arm Shoulder Flys- 10 w/ 10lbs
Congdon Curls- 10 w/ 15lbs
Side Tri Rise- 16 on each side
REPEAT & STRETCH

AB RIPPER X

In & Out-25
Seated Bicycle- 25 forward, 25 backwards
Seated Crunchy Frog- 25
Crossed Leg/Wide Leg Sit Ups- 25
Fifer Scissors- 25
Hip Rock 'N Raise- 25
Pulse Up (Heels to Heaven)- 25
V-Up Roll Ups- 25
Oblique Roll Ups- 25 on each side
Leg Climbs- 25
Mason Twists- 25Stretch
COOL DOWN AND STRETCH

Whew! That was a WORKOUT!!! I think I broke a sweat!

TREATMENTS

11:00am- Albuterol & Vest
11:20am- Hypertonic Saline(while on Vest)
11:40am- Pulmozyme
11:50am-Colistin
12:10pm- Flovent

3:00pm- Albuterol & Vest

5:00pm- Albuterol & Pep

10:55pm- Albuterol & Vest
11:05pm- Hypertonic Saline(while on Vest)
11:25pm- Pulmozyme
11:35pm- Colistine

Ipod touch+Vest=HIGH SCORES!

2009-07-30T16:34:00.000-07:00

Today I'm taking the time to reply to all the messages and comments sent to me about my blog.

What ever suggestions about my daily routine, or if you have anything you want me to write about on my blog, Feel free to message me!!

I also want to make my blog the best it could be, I want it to be easy to read as well as informing and entertaining, so I try to keep the writing short. On the other hand it wouldn't matter to me if 1 or 1,000,000 people read my blog as long as that 1 person that DOES read it gets inspired to get on track with their medicine schedule, learns to lean on God through the good AND the bad, or just plain gets a better understanding of CF and tries to make the best of it.

While I was on my Vest today I learned that as well as serving a good purpose to my lungs, it can also give me the best high score ever on a game called Tap Of War, kind of like Tug Of War.
Is that cheating? Certainly Not. Right? lol

My high score is 1,695! Can you beat it?

Also, I'm currently working on a Cystic Fibrosis awareness video and I will post it as soon as I get finished, I would appreciate it very much if you guys AND GAL's (wink wink) would watch it.

NO EXCUSES!!!!

FOOD

Breakfast
Cereal-300calories
Egg Sandwich- 250calories
2 apples

Lunch
Some kind of concoction of Macaroni, chili, and potatoes! (it was gooood!)- 400calories3 ensures- 1,050calories, 39grams of protein

Dinner
3 ensures- 1,050calories, 39grams of protein
2 Hot Dogs-600calories

6 ensures(milk drip)- 2,100calories 78grams of protein

TOTAL CALORIES-5,800
TOTAL PROTEIN- 156

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 129.6 (I actually lost 0.3lbs, YIKES!!)

EXERCISE

P90x PLYOMETRICS
(a.k.a. the mother of all workouts)
Most of the are 30sec because, come on, ANYONE can do something for 30seconds!

Warm Up- 7min.
Jump Squat- 30sec
Run Stance Squat- 30sec
Airborne Heisman- 30sec
Swing Kick- 1min
REPEAT
Squat Reach Jump- 30sec
Run Stance Squat Switch Pick Up- 30sec
Double Airborne Heisman- 30sec
Circle Run- 1min
REPEAT
Jump Knee Tuck- 30sec
Mary Kathrine Lunges- 30sec
Leap Frog Squat- 30sec
Twist Combo- 1min
REPEAT
Rock Star Hop- 15sec right, 15sec left
Gap Jump- 30sec
Squat Jack- 30sec
Military March- 1min
REPEAT
Run Squat 180 Jump Switch- 30sec
Lateral Leapfrog- 30sec
Monster Truck Tire- 30sec
Hot Foot- 1min
REPEAT
Cool Down

This workout really kicked my butt, I needed a shower BAD!!

TREATMENTS

1:30pm- Albuterol & Vest
1:40pm- Hypertonic Saline(while on Vest)
2:00pm- Pulmozyme
(still haven't got the sterile water for the colistine)
2:20pm- Flovent

4:00pm- Albuterol & Pep

6:00pm- Albuterol & Vest

10:00pm- Albuterol & Vest
10:10pm- Hypertonic Saline(while on Vest)
10:30pm- Pulmozyme
10:40pm- Colistine (Yay!! Finally got the Sterile water!)

After all that I managed to find one of my old ID's from the 9th grade and I thought I would Compare it to my other ones to see how I've grown, Check it out! (my favorite is the 9th grade one)

What do I do?

2009-07-29T20:08:00.000-07:00

Today I woke up around 7am, but I didn't get out of bed until 10am. For some reason I felt sick today. Maybe its because I didn't get to bed until 2am this morning. Over the past week I've made some adjustments to my daily schedule, Instead of 2 Vest treatments a day I've been doing 4, Instead of 4500 calories I've been getting around 5600+ calories, and I've been exercising more than ever.

Unfortunately, my body is refusing to cooperate with me. My arms are sore, my chest is sore, and today I had some redness in my mucus. I don't want to push anything, so today I wont be doing any P90x:(

What I want to know from you guys is, what are some things I can do to keep the motivation?

What are some ways that I can keep my progress up?

What order do you guys do your meds, morning routine in?

Do you wake up, get a shower, treatments then exercise? or exercise, treatments then shower?

On a lighter note today I got to see LEELAND in concert at chic-fil-a, they were AWESOME! God is working in the hearts of people in Baytown tonight.
I got to get my picture taken with the DRUMMER from Leeland!! Not only is he the drummer of such an awesome band, he is also a good friend of mine and could be seen in our Jesus Muzik video as Big Milky.

Here is the picture of us after the concert!

That's how my night went tonight, so if you would, please comment and let me know what I can do to improve my daily routine, or some ways you know to keep on schedule and tell my body "no! your not winning!! I will workout!!", There's no other way I can put it..

Thank you and God Bless!

-Casey Jones

Something New

2009-07-28T18:24:00.000-07:00

As I've been reading more and more, finding out how many CF patients are healthier and feeling better through exercise, for example Ronnie Sharpe, a guy who has CF and RUNS! yes RUNS! miles a day! Along with him there are many other "CFers" who are exercising daily and are benefiting from it.

I wanted to experience this FIRST HAND, so today, I'm trying something new...well almost new.

I've had this set of workout DVD's that are supposed to get you ripped in 90 days, collecting dust(as many things workout related do) for almost a year.

They're called P90x, Power 90 Extreme, and it's packed with tons of cardio and weight lifting routines. I wanted to be the first "CFer" to try it. So starting today and for the next 90 days, I'll track my lung function, weight, as well as write down the workouts for that day.

I'll post pictures of my progress through the weeks. Today was day 1 and I started "Chest and Back"

Here is my day 1 picture

NO EXCUSES!

FOOD

Breakfast
Hash browns- 580calories
Cherry Pancakes- 915calories
3 Ensures- 1,050calories, 39grams of protein

Lunch
2 Ensures- 700calories, 26grams of protein

Dinner
Cocoa Puffs- 390calories
6 Ensures(on milk drip)- 2,100 calories, 78grams of protein

Total Calories- 5,735
Total Protein- 143grams

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 129.9lbs

EXERCISE

Today I rode my bike 1 mile to warm up for my P90x Chest and Back routine.
Chest and Back

Round 1
Warm Up Stretch
Standard Push Ups- 10
Wide Front Pull Ups- 15(chair assist)
Military Push Ups- 10
Reverse Grip Chin Ups- 15(chair assist)
90 sec rest
Wide Fly Push Ups- 10
Closed Grip Overhand Pull Ups- 15(chair assist)
Decline Push ups- 10
Heavy Pants- 16reps w/15lbs
90 sec rest
Diamond Push Ups- 10
Lawnmower- 15 reps w/35lbs
Dive Bomber Push Ups- 5
Back Flys- 16 reps w/15lbs

After round 1 my little arms got tired so I had to move to my knees on the push ups:(

Round 2 (inverted of round 1)
Wide Front Pull Ups- 15(chair assist)
Standard Push Ups- 10 (knees)
Reverse Grip Chin Ups- 15(chair assist)
Military Push Ups- 10 (knees)
90 sec rest
Closed Grip Overhand Pull Ups- 15(chair assist)
Wide Fly Push Ups- 10 (knees)
Heavy Pants- 16reps w/15lbs
Decline Push ups- 10 (knees)
90 sec rest
Lawnmower- 10 reps w/35lbs
Diamond Push Ups- 10 (knees)
Back Flys- 16 reps w/15lbs
Dive Bomber Push Ups- 5 (knees)

AB Ripper X

In & Out-25
Seated Bicycle- 25 forward, 25 backwards
Seated Crunchy Frog- 25
Crossed Leg/Wide Leg Sit Ups- 25
Fifer Scissors- 25
Hip Rock 'N Raise- 25
Pulse Up (Heels to Heaven)- 25
V-Up Roll Ups- 25
Oblique Roll Ups- 25 on each side
Leg Climbs- 13 on each side
Mason Twists- 25
Stretch

TREATMENTS

10:20- Albuterol & Vest
10:30- Hypertonic Saline
10:50- Pulmozyme
(no colistine) I ran out of water to mix it with:(
11:00- Flovent

2:00- Albuterol & Pep

8:00- Albuterol & Vest

10:00- Albuterol & Vest
10:10- Hypertonic Saline
10:30- Pulmozyme
(no colistine)

CF Doesn't Bring Me Down

2009-07-28T09:01:00.000-07:00

Even when those dreaded Hospital Stays come around, I still don't let it bother me.

After I finish college at Texas Bible Institute, I want to go to Texas Art Institute to learn how to make professional videos and movies, I want to make christian based movies, something the whole family can enjoy! And I want to make music videos for Christian Artists, like the ones in my playlist.

I go into the hospital about 3-4 times a year, and even then I try to make the best of it. Everyone with CF will tell you, they are WELL known at the hospital, when I go in, the doctors, the janitors, the lunch lady, even the construction workers know my name, birthday, social security number....just kidding. But they do know my name, and I'm able to make some good videos because of it.

Here are 2 of my favorites, Hope you Enjoy!!

My lips dont line up on some parts of this one, but im told that's sort of my signature! Besides its hard to work with windows movie maker when it gets all freezy on ya!

This is when my friends Chris, Ricky, and (SCARLET) came to visit! That was a fun day!

What Kind of Exercise Do You Like Best?

2009-07-27T19:24:00.000-07:00

Today was a great day! I was able to get some good exercise in, eat a lot of food, and over all I feel really good!! I'm exited to see what my results are going to be for my next Doctor's appointment. I've got a really good feeling about it.

I want to share with you some of my views on exercise. There are 3 types of people when it comes to exercise,(well actually 4 when you count those of us who don't exercise at all) but for those of us who actually do exercise, there's 3 types.

The first type is people who like the indoor machines, the Treadmill, Tread climber, Elliptical, etc. You wanna get a good workout, with out getting outdoors, staying comfortable as well occupying your time with some T.V. or music from your favorite playlist.

The second, are the ones who like the out doors, the runners, sprinters, joggers, bike riders, etc.
You like the outdoors and a little bit of sunshine doesn't bother you at all. (this one's my favorite:))

And the third, you've probably already guessed by now are the people who like both outdoors and indoors...
You like being able to have options, if its raining outside you can always jump on the stationary bike or if its a great day outside you can go out there and enjoy your summer day!

I like to spend my exercise time outdoors, I like to feel the wind and just be...outside. One of the things I wanted to bring up is why I don't like using treadmills, stationary bikes, etc. Now don't get me wrong, I do like this equipment and it does help but it does have its weaknesses.

When your on the treadmill or stationary bike, you use one form of gravity, you use your legs to move your body UP and DOWN on the the pedals, or the treadmill. This is great and everything, but after a while your body will get used to it, and you will start to notice a decrease in improvement.
This is when you need to change it up a little bit, Go OUTSIDE! When you run, walk, sprint, ride, etc. OUTSIDE you use another type of gravity that actually PROPELS your body forward. This is great because it builds strength in your legs, stamina, and endurance. When you run on the treadmill you don't get the FORWARD motion that your body needs to build strength, this is something you can't get artificially. You have to go outside and do SOMETHING!

It is important for CFers to exercise daily in order to get the most out of your lungs and improve them. Let's put it this way, If my lung functions are at 70% and I don't exercise, It only takes about 20% to take a breath, so that's 50% that I don't use. After a while, when I try to use that other 50% I'll wonder why I'm so tired. Your lungs have to be used on a daily basis, everyone has their own activity level, and it's important to reach it daily that way you can increase lung function, and build up your energy(activity) level each day.

That's all I wanted to say for tonight, Just kinda give my thoughts on how I think exercise should be. Now all of this is strictly my opinion and how I feel about indoor home gym systems.

Thank you guys for reading, If you have any comments feel free to leave them! Hope you all have a great night! Thank you:)

-Casey Jones

NO EXCUSES!

FOOD:

Breakfast-
5 Scrambled eggs with ham & honey mustard- 1,370 Calories 56grams of Protein

Lunch-
Home Style Bakes Chicken and Mashed Potatoes- 850 Calories
1 box of butterscotch pudding- 660 Calories

Dinner-
Spaghetti- 650 calories
2 Ensure- 700 calories, 26grams of protien

6 Ensure(milk drip)- 2,100 calories 78grams of protein

Total Calories- 6,250
Total Protein- 160 grams

EXERCISE:

Today my goal was to go at least 3 miles on the bike, I only had 40 minutes of riding time in order to get back home in time to get my lunch out of the oven, but after about 2 miles, I was like, "this is cake!" and on the third mile I said, "one more" and on the fourth I said, "2 more", by the 5th mile it started raining and I had to go inside:( I wish I would have been able to get in one more!! It felt good today, I felt like my lungs were opening up more and I feel like my lung functions will be high next month if I keep this up!

TREATMENTS:

11:35- Albuterol & Vest
11:45- Hypertonic Saline(while on vest)
12:05- Pulmozyme
12:15- Colistine
12:35- Flovent

2:20- Albuterol(inhaler) & Pep

6:00- Albuterol & Vest

9:00- Albuterol & Vest
9:10- Hypertonic Saline(on vest)
9:30- Pulmozyme
9:40- Colistine

GOAL WEIGHT- 150lbs
CURRENT WEIGHT- 128.6

TIME TO GET ON SCHEDULE!!!

2009-07-26T22:20:00.000-07:00

It is important to have a good schedule. Something to keep you on track and focused on getting yourself, or your child, as healthy as possible. Here are some things to keep in mind as well as things that I do to get myself healthy. I hope they help:)

KEEP A GOOD SYESTEM
Come up with a good system that will help you remember to take your pills and do your treatments.
One of the things my mom would do as a kid is rubber band my Enzymes to the fridge,

I love to eat and she knew every time I would reach for the fridge those enzymes would be right there on the handle, and I would remember to take them. It helps to leave little hints for yourself throughout the day also, If you don’t always remember to take your enzymes, tie a rubber band around your wrist that says enzymes. Or if it’s your treatments you forget, write the names of your treatments down on strips of paper and tack them to a bulletin board or keep them in your pocket.

ORGANIZE
Organization is key, you should have a place, whether it be your bedroom, living room, office, or whatever, for you to do your treatments at. This place should be entertaining for you so that you don’t get bored for the 30 minutes to an hour your on your treatments. My treatment area is in my bedroom(so I can shut the door, mostly because I’m a loud cougher). I have a computer desk set up with my Vest, Nebulizer, laptop and Tv. When I do my treatments I entertain myself by blogging, Twitter or Myspace. And if that’s not entertaining me that day, I usually watch some Tv.

I keep a trash can near by because I'm a big cougher.

I keep my pills throughout the week in mini Ziploc bags thumb tacked on a bulletin board, and each day I just take the pills out and throw the bag away. I put new bags with a new set of pills about mid-week. As far as treatments go, I just do as I said before, I cut strips of paper with the treatments name and place them in the bags.

HERE ARE MY PILLS LAYED OUT FOR THE WEEK:

SET GOALS
It is important to have long-term goals, but it is equaly important to have short term goals. Whether they are monthly, weekly, or daily, short term goals give you sort of a boost of accomplishment that keep you going on to the next goal. Daily goals are the best for me. You can start off slow by saying, today I’m going to Eat this many calories, or I’m going to pray for 30mins before bed, or I’m gonna finish all my treatments for the day by 9pm so I can get some good sleep. Whatever your goal may be, set it. And work as hard as you can to accomplish it. You’ll find that the little goals you set today get easier and easier, then you move on to bigger ones like, I’m going to gain 10lbs and 10% lung function before my next appointment, or I’m going 5 miles on my bike at full speed. When you set daily goals your not only giving yourself motivation throughout the day, your also improving your own physical health and mentality. If you have a kid with CF, my mom used to make BETS with me, “I bet you cant eat 2 hamburgers and a hotdog!” You know? Or “I bet you can’t set up your pump before the next commercial goes off.” Whatever you gotta do to motivate your kid, DO IT!

MAKE IT FUN
It takes 21 times of doing something to make it a habit. If you can make doing treatments and taking pills fun for 21 days you can make it a habit for your child or yourself. Put on your favorite T.V. show, DVD, if you run a business from the Web, or just like being on the computer, get on the computer! If your little girl likes to play dolls, play dolls with them! If the boy likes trucks, play trucks! Once you make your treatment time and taking your pills a habit, is when its more than what you HAVE to do, it becomes what you WANT to do. Sooner or later your child will say “let’s play dolls!” or “let’s play trucks”, they will WANT to do their treatments! If you have CF and you WANT to get on the computer, train yourself so that when you get on the computer, you get on your treatments, then you will WANT to get your treatments so that you can check your e-mail, or updates on Twitter.

While I'm on my treatments I go ahead and set up my pump!

I use 6 cans of Ensure Plus, 350calories and 13grams of protien EACH!!

WRITE IT DOWN
Keep track of what you do during the day, so that the next day you know what you did and you can know what to do the next day. Write down what you ate, what time you did your treatments, and the exercise you did, much like my NO EXCUSES blogs. If your wondering why your not gaining weight, or why your PFT’s haven’t gone up, keep a log or a book you can write everything down in, that way you can look back at it and you’ll know if you need to increase your treatments or eat more during the day. Writing it down is also a good way you can tell your doctor what you are doing and he/she can make adjustments on whatever your doing. I kept a log of what I was eating for a full month and kept track of my weight 3 times a day, In one month I gained 20lbs, my doctor was impressed and said I should tell all the Cfers I know, and here I am. So try it!

These are just a few things that I hope will help you out in getting healthy. Please take the time to try these things, they haven’t failed me yet. If theres anything I might have missed or didn’t go over, or if you have any suggestions on how I can improve my routine, feel free to message me at caseyjones343@yahoo.com

Thank You and God Bless!

-Casey Jones

NO EXCUSES!

Food:
Banana

Apple

2 Ensures

Cinamon Roll

Shells and Alfredo with ham

Ensure

3 bbq Ribs

1 Boneless chicken breast

Potato Salad

Fudge

6 Ensures(on milkdrip)

Exercise:
Today my goal was to ride at least 1 mile on my bike, I knew that I would be at church all day, jumping around so I set a goal lower than usual, unfortunatley as soon as I got home today, I slept. I slept from 2 to 4 o'clock, and had to leave for night service. Once I got home I exercised by running in place for about 15 mins. and did my stretch routine.

Treatments:

7:15- Vest, Albuterol

7:25- Hypertonic Saline(while on vest)

7:45- Pulmozyme

8:00- Colistine

8:20-Flovent

12:45- Albuterol and Pep

4:00- Albuterol and Vest

10:00- Albuterol and Vest

10:10- Hypertonic Saline(while on vest)

10:30- Pulomozyme

10:45- Colistine

11:05- Flovent

GOAL WEIGHT: 150lbs
CURRENT WEIGHT: 128lbs

I got to sing the National Antem at the Astros Game!!!

2009-07-25T19:36:00.000-07:00

Hey Everyone!!!
Tonight, unfortunately I wont be able to do the post I intended on doing, however I will leave you with a video of me getting to sing the National Anthem at the Astros game last night. We had a blast and I will be able to post more pictures and videos from the game sooon! But I am kind of tired , right now I am doing my nightly meds before bed, and I have to wake up at 7AM to do my morning ones before church!

Thanks everyone for the comments and for following me, I will try my best to keep you guys informed and entertained, and I hope you enjoy this video:

NO EXCUSES!

Food

16oz Glass of Milk-
2 Ensures- 700 calories, 26g of protein
Hamburger rice medley(SOS) over 2 open slices of bread-400 calories, unknown protein
Banana- unknown calories, unknown protein
Shells and Alfredo with Ham- 400 calories, unknown protein
3lbs of Watermelon- 0 calories, 0 protein
4 Sloppy Joe sandwiches, and 2 Ensures-1,775 calories, 26+ grams of protein
6 Ensures (through milk drip)- 2,100 calories, 78g of protein
(All with Enzymes!)

Total Calories- 5,575+

Total Protein- 128+ grams

Goal Weight- 150lbs

Current Weight- 125.3lbs

Exercise

Today my goal was to ride the bike for at least 3 miles, do my huff cough routine and then go inside, I ended up going a total of 3.2 miles, .2 being the cool down part of the ride and getting back home. So I met my goal for today!! (hoooray!)
And after I finished I got right into my routine and did my treatments, during my treatments I breathed in deeper than normal and felt a lot better throughout the day.

Treatments

1:30pm- Albuterol and Vest
1:40pm- Hypertonic Saline(during Vest)
2:00pm- Pulmozyme
2:10pm- Colistine

5:00pm- Albuterol and Vest

9:30pm- Albuterol and Vest
9:40pm- Hypertonic Saline(during Vest)
10:00pm- Pulmozyme
10:10pm- Colistine

(NOTICE: My treatments do not start at 1:30pm, I woke up at 1 today, that's why they are so late because I didn't go to bed until 4am from the excitement from the Stros game!)

Wakey wakey eggs and.....Hamburger Meat??

2009-07-25T06:00:00.000-07:00

Today a particular point was made to me, and it couldn't have been anymore clearer what I have to do.

When you have CF your gonna get sick, your gonna go into the hospital, your gonna go through tough times that many people may not ever understand.
But when you have all the tools necessary to prevent a problem and you still overlook them(meaning the tools) every day, and then one day you have a doctors appointment and your PFT's aren't as good as they should be, so you have to come in(meaning a hospital stay). So you get teary eyed, you start thinking "why me?" "my birthdays coming up next week and now I have to spend it in the hospital!" "why does everything bad have to happen to me?"

You wanna know why? You had the equipment needed to avoid these hospital stays and you know what you can do to prevent this from happening, yet you've ignored it for so long that it's too late.

When I realized this particular answer to a, what can seem like a hard question, I knew that, here I am coming up with solutions, and ways to help people with CF get rid of mucus, remember to take they're meds, and I'm the main one who IGNORES my medicines, "forgets" to do my treatments, and even ignores my own reasoning.

Now it's time to turn things around. From here on out I commit to doing my treatments when and how they are supposed to be done, No shortcuts! I know how some CFers(including me) like to try and pour out the last bit of Tobi, just so they can be done with it quicker. The road to hell as well as the road to sickness and disease is paved with SHORTCUTS!
Matthew 7:13-14 (The Message)
"Don't look for shortcuts to God. The market is flooded with surefire, easygoing formulas for a successful life that can be practiced in your spare time. Don't fall for that stuff, even though crowds of people do. The way to life—to God!—is vigorous and requires total attention.
I commit to not only this but to do my pills and get on my milk drip when I'm supposed to, NO EXCUSES!

Now, don't get me wrong I'm not saying, just because I will put in the time and effort needed to do all my treatments, pills, etc. on time doesn't mean that I will no longer get sick or never go into the hospital, It just means that I wont be at fault anymore, CF will.

By doing this I will post a daily Calorie counter which will tell everything I've eaten, the calories it has, the protein, my daily exercise, and the times I did my treatments...There will be an extended post at the bottom of each of my posts labeled NO EXCUSES, and this will track all my "to do's" of the day.

As well as provide my own personal information, I will also elaborate more on my scheduling system that I have configured over the years that really keeps me healthy and makes my PFT's go through the roof!(on my pft scale)

Would I Ever "Undo" Having CF?

2009-07-24T11:41:00.000-07:00

Here's a Video Response to http://www.runsickboyrun.com/ 's Question:
If You Could Make A Choice Of CF or No CF What Would It Be?

(you may wanna turn your speakers up, I have a very bass voice!)

Check out my VEINS!?!?

2009-07-24T11:27:00.000-07:00

DISCLAIMER: This video may not be suitable for people with weak stomachs, watch with caution.

These are what my veins look like after working out with P90x! Ha, and the nurses said I didn't have any....

Why cant they pop out like that when I need them to? Like at doctors appointments...

My CF "firsts"

2009-07-23T22:37:00.001-07:00

We all have our "firsts" in life that we go through, for example our first car, a first girlfriend, first kiss, first bike, etc. But when you have Cystic Fibrosis, growing up our "firsts" are....well, a little different.

Some of the "firsts" a CFer may go through, are some firsts that maybe someone without CF won't experience until they are a lot older, or sometimes not at all!

Here are some of my CF "firsts"

MY FIRST,

Cough- At Birth (August 15, 1990)

Shot- 5 hours old

Sugery- 6 hours old

Antibiotic- (see first shot)

Halloween Costume (in hospital)- 2 months old

First Hickups- 3 months old

Diagnosis- 3 months old

CF Doctor- 3 months old (Dr. Sielhiemer) she's been in the business for 25+ years!

Case of Pneumonia- 4 months old (due to asperation)

Breathing Treatment- 4 months old

Day Home- 5 months, 1 week, and 2 days old

Check Up- 3 days after my first day home

PFT- 8 months old

Haircut- 1 year old

Dose of Pulmozyme- 2 years

Sibling- 3 years old (april 30, 1993)

Day of School- 5 years old (August 22, 1995)

Hospital Stay During the School Year- (August 29, 1995)

Graduation- 5 years old (delayed due to surgery)

Real Friend- Morgan Williams (1st Grade) '96

Dose of Tobi-8 years old (it was still in clinical trial stage)

Nasal Surgery- 11 years old

Vest Treatment- 12 years old

Make a Wish Trip- 18 years old (March 16, 2009)

Longest Hospital Stay- 18 years old (40 days)

CF walk- 18 years (may 16, 2009)

These are just a few of my "firsts" and if you have CF your "firsts" may look similar to this, and I would love to hear about them just leave me a comment and tell me what you think or if theres anything else I might have missed and I would be glad to post it up!

Heres a picture you might enjoy,

Its me when I was in the hospital April 30, 2009

Sometimes a hospital stay will bring out your crazy side;)

Introduction

2009-07-23T09:54:00.000-07:00

Hello,

Welcome to my blog! Let me tell you a little bit about myself before I go on,

My name is Casey Mcphail, but I go by Casey Jones (like the guy from the Ninja Turtles). The nickname was given to me in the third grade after passing out Ninja Turtle Valentines Day cards and from then on it stuck.

I'm 18 years old, and I live in Texas. I just graduated from Crosby High School and I start college September 12.

I am a proud believer in Jesus Christ and I attend church almost every day of the week. My church is Fountain of Faith Fellowship Church which is an Assembly of God Church in Baytown, TX. The website is http://www.thebaytownchurch.com/

The college that I will be attending is Texas Bible Institute(TBI) located in Columbus, TX. Its a two year college and I will be living on campus for the first nine months. Living on campus is something that I would definitely have to get used to.

When I was three months old I was diagnosed with Cystic Fibrosis, Cystic Fibrosis is a disease that is passed on when both parents have the defective CF gene. Many people have it and don't even show symptoms of it. Cystic Fibrosis is often described as a lung and digestive disorder that causes mucus to build up in the lungs to a point where your body has to fight everyday to get it out, and that is simply not the case.

My goal is to tell you all about what CF is to me before you "Google it". Something I've learned from one of my CF buddies, Ronnie Sharpe,

(You can follow his story at http://www.runsickboyrun.com/ and to see the email

exchange where I found alot of this out click on This LINK)

When someone googles CF they will get a bunch of facts and statistics that will leave you wandering why I'm still alive...so we won't go there! I'll tell you one thing right now, with the right attitude and support you will go a long way and me as well as many other "CFers" will tell you, Statistics do not apply to me!

The doctors described CF like this;

The CF gene is actually backwards, Instead of having two genes, one that produces mucus and one that gets rid of it, you have two genes that produce it. So in turn you have to do things to get rid of it yourself. Some examples of this include:

Breathing Treatments
Pills
Exercise
Chest Physical Therapy
Vest
Hand Clap
Pep
Flutter
Huff Cough

CF also effects the digestive system. The pancreas is responsible for producing pancreatic enzymes which are necessary to deliver nutrients to the blood stream, giving healthy nutrition to the body. This often poses a problem when mucus builds up in the pancreas blocking, or in some cases, completely stops enzyme production. Things us CFers can do to help treat this are:

Take enzymes provided by the doctor EVERY time we eat!
Cough up and SPIT OUT(do not swallow) mucus as much as possible.

I've lived my whole life on the upper hand of Cystic Fibrosis(for the most part). And I know that God has always been there for me and for my family through the good and the bad, (thanks to him more good than bad). I have had many hospital stays, about 3-4 a year 14-21 days at a time, I have had many surgeries including 2 Imbolization and a Cardio pulmonary infusion this past year, and with all that I still do my treatments and pills everyday.

I never let CF hold me back, or get in the way, or put me down. I'm always the guy who is making everybody laugh when you first walk into a room. I live my life day to day and keep a positive attitude about everything I do.

I created this blog to provide information as well as hope for many CF patients and parents out there so that they can learn and share similar situations CFers will go through, plus its always good to have someone you can talk to who knows what your going through. Feel free to send me a message anytime and I hope to hear from all of you soon!

-Casey Jones