Friday, December 18, 2009

The First Day Back!!!

Well, it's my first day back...and it feels like my first day back :) I always have this same sort of "foggy" feeling when I first get out of The Hole.

So am I the only one? Do any of you feel a little "off" when you first get out of the Hole? If so, what does it feel like?

Thursday, December 17, 2009

Set Me Free!!!

I am free, I am free, tell the world that I am free!!!! I'm so thankful for the time I spent in the hospital as I have increased my lung function and I am back to the point where I can start kicking CF's butt OUTSIDE of these walls! Starting Monday, I get to start in on my routine and I am so so so thankful for that. What are you guys thankful for today???

Wednesday, December 16, 2009

One More Day Wednesday

Only one more day to go in The Hole!!! I sure look crazy in the video down there :) I touch on the importance of "sharing our playbooks" in the CF community and how important it can be to become involved. I encourage you to join us so we can stand up with one voice and let the world know that we are indeed here!!!

What do you say? Ready to turn this world on it's head? Let's do it!

Tuesday, December 15, 2009

The Top Ten Most Played List (iTunes)

I was actually a little nervous to see what my most played songs on my iTunes were and share them with you guys, but I promised myself (and you) that no matter what it was, I would be honest and list it. I highly suggest you look up these songs and see what you think. I may be biased, but I think I have pretty good taste when it comes to music :)

Just missed the cut: The Blower's Daughter by Damien Rice, Makin' Good Love by Avant, You Can Bring Me Flowers by Ray LaMontagne, Wild Horses (Live) by Alicia Keys & Adam Levin

10. The Freshmen (Acoustic) by The Verve Pipe (139 plays)

9. Drive by Bic Runga (140 plays)

8. Crash Into Me by Dave Matthews (144 plays)

7. Look What You've Done by JET (145 plays)

6. It's Your Love by Tim McGraw & Faith Hill (151 plays)

5. 3am (Acoustic) by Matchbox Twenty (158 plays)

4. Amie by Damien Rice (160 plays)

3. Boston by Augustana (176 plays)

2. I Love You by Sarah McLachlan (178 plays)

1. Fishing For by Delcoa (227 plays)

There you have it!! Now the question is, what is your Top Ten Most Played list???? And do you think this list says anything about me? :)

Monday, December 14, 2009

Date Night: Hospital Edition

I have to be honest with you guys, I've been getting a little stir crazy these last few days. As I've said in past blog posts, I actually like hospital stays. Ronnie and I tend to have a lot of fun while he's in. It's a good opportunity to spend time together, with no distractions (minus nurses in and out, doctors rounding, the IV machine beeping, the RTs coming by 4 times/day and the PCTs coming for vitals what feels like every 15 minutes). This hospital stay hasn't been any different in terms of fun. We've done some wedding planning, done WII bowling, spent time with his family, gone for nice walks, listened to Johnjay and Rich podcasts, etc etc. However, this is the first time I've spent a few weeks straight in here. And I have to tell you, it's made me a little nutty. I don't so much think that what matters is being stuck in the hospital, it's being stuck in one place for too long. I just feel like the walls are closing in at times.

Saturday night, I decided that was it. We were getting out of the room. We were going to have a change of scenery. We were going to get some alone time. We were going to have a DATE. I had brought some date-making supplies with me from Phoenix, but hadn't had a chance to use them. Saturday night was the night. It also happened to be exactly one month to the day that we got engaged! While Ronnie was getting his 7PM pound, I ran to to the grocery store to get sparkling cider and to Pei Wei and picked up fried rice with chicken and no broccoli for him and blazing noodles with chicken for me. I then found a secluded table outside of the hospital with a mountain view (and a TON of romantic road noise). I put down a tablecloth, lit some candles and told Ronnie where to meet me.

Ronnie meeting me at the rendezvous point

Ronnie really excited about dinner (and his date)

Getting ready to open our bubbly (sparkling cider)

I thought it was a twist-off...but it wasn't. So we had to use finger nail clippers

Our first kiss...on a date night, while in the hospital, at that table, with Pei Wei, eating on a blue table cloth, in the month of December

We had an awesome few hours away from the hospital routine. I felt totally refreshed. It was one of the best date nights we've ever had. I really recommend other CF couples giving this a shot next time you're in the hospital together. It was exactly what we needed!

Sunday, December 13, 2009

Inhaling Life!!!!

Guest Post by Destiny Whittington

My journey with cystic fibrosis started when I was eighteen months old. The doctors told my mom to take me home love me until I was gone; I wouldn’t see three years old. But, as I got older, I was relatively healthy, so much so that I had no idea that I had CF ‘til I was twelve years old. My mom never came out and said to my brother and me “kids, you have a terminal illness.” We took our breathing treatments, our enzymes, and we did our clapping but to us it was either a game we played, or I just thought everyone took meds, so everyone has what I got. Little did I know that was far from the truth.

When I was ten, I was diagnosed with rheumatoid arthritis. That was the first moment I truly felt my world falling down around me. I love basketball and was good at it. I ran track, coming in first or second place. My dream was to join the navy and play basketball for them, while getting my training and education in marine biology. I was an active child I didn’t have time for CF or this RA. It wasn’t in my lifetime dream or plans.

The doc had told my mom those grim words behind his concerned smile, “take her home and love her she will be a vegetable by the age of sixteen years old. She will never learn to drive a car or go to prom. Think of a nursing home you want to put her in, to care for her when you can not anymore.”

At the age of twelve, my CF doc had this brilliant idea to help me gain weight, which was to insert a G-button to help ease the pain off my joints, by adding some meat on my bones. Two days later I was in Texas Children’s Hospital, in Houston, Tx having a fundoplasty and a G-button insertion, and just as he had said: I gained weight. My arthritis had its good days and bad days, but then at the age of seventeen it went into complete remission, with very few to no episodes.

I finally, by the grace of God, graduated high school and went to college. I begged for my doc to take out my G-button. He agreed, against his better judgment, but I promised him I would stay at a healthy weight. That ended up being more of a job then I first thought. Eating lots of calories seems like everyone’s dream but damn 2k - 4k per day is a lot of eating!

After college was the first time I ever experienced hemoptysis or pseudomonas. Before then, I had never heard those words before. I was in and out of the hospital - sometimes for months at a time - getting to go home for a week or two, then back in. Out of a twelve month year, I was in for nine-and-half months, total. My doctor thought right now would be a good time to put in a port a cath.

Then, in December of 2004, while moving into my new apartment on the third floor, I began to feel wheezing. I thought to myself when I stop I need to do a quick breathing treatment. It began to get worse… Then, a very familiar and unwanted taste began to make itself present in the back of my throat, and with one cough I saw the parking lot turning a dark, deep red color. I went back up the stairs as fast as my body could carry me, filling up the sink will blood. I thought in my panic state of mind, to grab a cup and collect the blood. When the blood showed no sight of slowing down or stopping, I thought to call my mom (who worked thirty minutes from me and it naturally took her an hour to get to me). I was getting weak, I could barley talk, and by the time my mom had gotten there, I was passed out. My brother and Mom carried me down the stairs. Even in that state, my mindset was: I can still walk down the stairs. Failing miserably to get down the stairs by myself.

After arriving to the ER, I handed the cup to the nurse and doc, who were amazed at the amount of blood: a whole cup. I was being rushed in for an emergency embolization and, due to the amount of blood I had lost; I also had to have a blood transfusion. When I woke up my doc was standing over me and began to tell me what was going on, what they had done which most of it I remember or knew already. She said that the cup I had brought in had masses in it. I thought yea, it is probably my bbq sandwich I had eaten only minutes earlier but she went on to tell me they had done a biopsy of the mass and it was in fact, lung matter, I had literally coughed up pieces of my lung. My regular CF doc had came into my room sat down with me, smiled and said “Destiny, you are coughing up a lung, you have a few options here”. She then began to explain to me that I would probably want to consider taking that part of the lung out, or have it replaced. I didn’t think either was a good option for me. She explained that the bleeding could happen again and that the next time it may not stop and could kill me. “a ticking time bomb” is the words she used. I stuck with my guns, after getting the scare of my life I vowed to start walking, and whatever else I had to do to get better.

My pfts were in the high 90s and I was feeling pretty good and then about two years ago I began to get lazy, unmotivated and on 09-11-09 my PFTs were at 80% fev1: 2.6 the lowest I have had. I was getting my prescreening to do a research drug for Texas Children’s Hospital and my PFTs had to be 80 or lower just so happened they were at 80% a part of me was happy b/c I wanted to do this study but another part was sadden. I had seen that my laziness had let me drop so low. I had been reading Ronnie’s blogs and watching him exercise and missing that part of my life, so I told my boyfriend Jack that we needed to start exercising, instead of taking my dog in and out to do potty business, I now walk her around the block or a mile at the park coming in coughing bringing up all kinds of stuff. On 11-10-09 my PFTs were 95% fev1: 2.86. There are still days when I don’t want to go walk a lot due to my RA, or if the weather isn’t permitting. I will resort to my top of the line medicine, or as I say, “the cure all”. I will get on the net and look up funny videos and starting laughing and snorting till I am coughing up tons of mucus and I feel tons better.J

My mom was told more than once by doctors that I would not live past 2 and if I did there would be no way it would a “normal” life, My mom didn’t listen to them she let my brother and I play baseball, basketball, track, girl scouts and whatever else we wanted to do we got dirty making mud cakes, and we got plenty in trouble at school and home. She never treated us different and didn’t let anyone else either. I am now looking at the age of 29 in only 5 months and I am doing incredibly well. My fighting and positive attitude is what helps me the most. We are all in this together. I am not going to quit, I’m not stopping, I may bend but I will not break. I am determined to find a cure in my lifetime. This is for the future CFers.

Let us together have CF stand for “Cure Found”. God bless ya’ll and thank you for taking time to read this.

Bio: My name is Destiny. I am a twenty-eight year old CFer. I live in Houston Texas. I live with my amazing boyfriend Jack and our dog meme, whom will be 6 years old on Valentine’s day. I’m going to college for the third time, in hopes of doing something with this degree.

I would like to take a moment to Thank Ronnie for this opportunity to be able to speak out about my story. I began reading Ronnie’s blog a few months ago, I just fell in the love with his passion for reaching out to fellow CFers and his drive to make a better tomorrow for himself and others around him. I knew I wanted to a part of it somehow. So each day I became inspired, motivated and ready to take on the world.

When first asked to do this, I really didn’t know what to talk about. As all of you know, CF isn’t one-sided. We all have the battle scars to prove that.

Note from Ronnie: I just wanted to give a big thank you to Destiny for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on. We may face some pretty daunting obstacles but through a little bit of hard work and perseverance, we CAN have some control over this disease. Please leave Destiny your encouraging comments as well as any questions you may have! You can find her on Facebook, Twitter @InhalingLife and

If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.