5 Rules in Raising a Child with Cystic Fibrosis

Originally posted August 2nd, 2009

Welcome to the first edition of Spotlight Sunday. Today, I am featuring a blog that has five simple rules to keep in mind while raising a child with Cystic Fibrosis. Lauren does a great job highlighting the "rules" her fabulous mother taught her while she was growing up (and I guarantee still hold true today). Make sure to stop by Lauren's blog "I Have CF. So What!?" and leave her some comments. You can get to her blog by clicking on the title "How I was Raised". If you'd like to see some blogs that I have written about my mom, please click here.

How I was Raised by Lauren "LauLau"

I've gotten comments about how my mom raised me to be so positive. So here is a post that me and my mom came up with:

Here are the five rules she lives by:

1) Always look on the bright side:

My mom always maintained that we must look on the bright side. If I had to go in the hospital it was "Well at least you'll be feeling better for the rest of the school year!" The rationale for doing my treatments was that it would make me feel better for the rest of the DAY. If I got a new medicine she said "well at least it's just a pill!" and I just added it to the rest of my pills. Looking on the bright side made everything seem o.k.

2) Never let em see ya sweat, but be honest in the most positive way possible

My mom NEVER let me see her worry. She admits that when I was in the hospital she'd be up all night worrying, or when she hears me coughing at night she is concerned. But I never saw that. It's ok that she was worried and scared, she's allowed to be... but the fact that I didn't know how hard CF was supposed to be made me think it WASN'T hard. However, she did deal with it matter of factly around me. She didn't give me false expectations, she was honest about how I would feel in the hospital but she didn't make me afraid when she told me these things. I remember when I was in the hospital with hemoptysis (coughing up blood) I was so scared, and she was probably even more scared. She sat by my side holding my hand comforting me, telling me that a blood transfusion would only help me. She was honest that I might need surgery to stop the bleeding. And I trusted her, I still do, she's a nurse and she knows what she's talking about. That trust is important to have when your young and you don't necessarily know everything that is going on.

3) Stay as healthy as possible (whatever it takes).

My mom was ALWAYS on my back about doing my treatments and taking my pills. Even when I cried about it she was still persistent. She always said "It will only make you feel better" or that if i didn't do it, I would have to go in the hospital. This was enough to make me shove my nebulizer in my mouth! Sometimes, she even pretended to call the doctor to tell on me! I hated when she did that.. but she was only doing it to keep me healthy, and it worked! Now I know that I have to do my treatments because it will help ME and because she made it a daily necessity, I now see that doing everything I'm supposed to is ABSOLUTELY NECESSARY!

4) Make things fun:

Every doctors appointment was an adventure for me and my mom. Whether we sang on the car ride there (we still do), or went to a fun place in boston, we always had fun. She would get me a gift from the gift shop, or take me to the Enchanted Village (a Christmas display). Sometimes we would go out to eat to Friendly's or the Hospital Cafe. In the hospital, she brought me games, movies, and crafts to keep me entertained. She would even bring my friends in to see me! While I was doing treatments she would play games with me or just sit and chat with me. Every thing I had to do CF-wise, she made it fun. And this made everything A LOT more bearable!

5) Live your life to the fullest, and don't live in a bubble:

My mom taught me to "dance like no one's watching." She didn't put me in a bubble because I had CF. I played in the cold, did sports, got dirty, and stayed up late some nights. She never told me I couldn't do something because I had CF. Even when I missed school for 2 weeks she made sure I was doing my homework and staying on top of things. One time, I was in the hospital for my first formal dance in 7th grade. She wouldn't let my CF get in the way of living my teenage life. She convinced the doctors to let me out for the night, even though I had just come out of surgery for complications after a sinus surgery. She wouldn't have done this if she didn't think I could handle it, and she waited outside the dance for 2 or 3 hours in case anything went wrong, and let me enjoy my formal dance. CF hasn't stopped me from living life because of my mom, and because of that I am able to remain positive.

If you are a CF parent, I hope our "rules" have helped. If you would like to comment or ask my mom anything her email is mamabombo@comcast.net.

Seriously, Snow Stinks!!!

Here's what I was doing around Christmas time last year....

Rondi Sings "Baby It's Cold Outside"

I thought this would be the perfect music video to show this time of year. I did alter some of the lyrics, so this would be the PG-13 version. Don't worry, nothing too crazy :) Merry Christmas Eve everyone!!!!

Alright, now go get your shopping done!

Tis the Season (but we can still workout)!!

My posts this Christmas season will probably be a bit different than many of you are used to. Here's the reasons: One, I don't expect many of you, nor want you, to be here on my blog instead of with your family. Two, this time of year is also crazy for me. Three, it will give us all a chance to relax a little more and catch up on previous posts. What I'd like to do is re-post blogs or videos that you all found either interesting or which received a lot of "action". How does that sound?

I do however want to encourage you guys to make sure to stay as active as possible during this time of year. Believe me, I know it's hectic and the weather can stink, but that can't stop us from doing 100 jumping jacks in our living room :) Just because you can't take 30 minutes to walk or run, doesn't mean you can't take 5 minutes to do push-ups. Anytime you increase your heart rate, you're most likely also having to take deeper breaths and probably coughing a bit. Even if you can only squeeze in 5 minutes a day, it's still better than doing jack squat!

Make sure to watch this video if you haven't before, then, let me know what your excuse is!

Alright, let me have em...why can't you commit to at least 5 minutes of real exercise a day for the next 5 days? Actually, tell me why you couldn't commit to 15 :)

My Top Ten Christmas Movies

One thing you'll notice about my Top Ten Christmas movie list is that I don't really list any of the "classics" except for maybe the National Lampoon's flick and Charlie Brown. You won't see, A Miracle On 34th Street, A Christmas Carol or A Christmas Story, but I have a very good reason: I've never seen them. You'll also notice that many of these aren't really "Christmas movies", but I do promise that Christmas was part of the movie one way or another.

10. The Family Stone- Don't remember a whole lot about this movie other than I thought it was pretty entertaining.

9. Ernest Saves Christmas- One of those goof ball movies I loved when I was younger. Not nearly as good as Ernest Goes to Camp.

8. A Charlie Brown Christmas- Watched it many many many many times around the holiday season...although it seems to be coming on earlier and earlier in the year.

7. National Lampoon's Christmas Vacation- This is one of those movies you could watch everyday from now until the New Year and still get a good laugh from it.

6. Gremlins- I always wanted one of those little furry guys.

5. While You Were Sleeping- One of the best romantic comedies out there; full of cheesy and very predictable scenes.

4. Home Alone- I really shouldn't have to explain this one. I doubt that if you are reading this you'd question why. And if you are, please go rent it for the holidays.

3. Love Actually- This is actually one of my favorite movies ever (as well as #2 & #1). It had some questionable scenes, but it was a very fascinating movie.

2. Serendipity- My favorite romantic comedy ever. I've seen this movie 100 times (not really) and I still never really know if he'll get the girl.

1. Elf- If I were forced to watch this movie everyday until the day I died, I really don't think I'd be upset.

There you have it!! Alright, let's see your list! Let me know what I'm missing.

Let the Wedding Frenzy Begin!!

First and foremost I want to announce that my brother, Josh, just got engaged to his girlfriend (NOW FIANCEE) Christine on Saturday night. The Melin's are so excited to welcome her into our family. So when I say, "Let the wedding frenzy begin," I don't only mean ours, but their will be coming fast also. WOOT WOOT!!

Now onto what's new with us in the wedding realm. As I mentioned in a few posts and as Ronnie has mentioned, we have really ramped up the wedding planning by visiting venues and trying on dresses. The main reason for the fire under our butts is because my mom is home from Shanghai and we only have 2 weeks with her to power through the big stuff. Before she heads back on January 2, we want to have a dress bought, a venue picked, a flower vendor and MAYYYYBE invitations decided on, designed and ordered. We are well on our way to making it through that list after this last week.

On Wednesday my mom and I went to one venue, on Thursday we went to another venue and to a bridal boutique, and on Saturday, Ronnie's mom, Chris, and younger brother, Andrew, came up to Phoenix to join me, my mom, and Ronnie in some dress shopping and venue hopping. As of now, we almost have our mind made up on the venue (see the venue at www.sassi.biz) and a dress (YES...THE DRESS!!!!!!). I am a little nervous to make the final call on the dress, but I think I found the one. We all looked at dresses together (RONNIE TOO) and got everyone's opinion of what looks best (me not letting on to what I reallllly liked so Ronnie wouldn't know). After that, my mom and I went to another store and ended up finding something that I think everyone will reallllllly love, but that no one would ever have guessed or picked out...that way Ronnie will be SURPRISED!!!! I am super excited!!

So anywhooo...that is where we are with things. I wish I had something more entertaining or educational to share with you, but unfortunately for you, I only have wedding on the brain. I have attached a few photos for your viewing pleasure, but I'm not going to post any pictures of me in dresses (as I originally thought I would) for fear of Ronnie figuring out what the dress will look like.

I did have one favor to ask of all of you. I WANT SUGGESTIONS. Did you or someone you know have a cool, unique thing at your wedding? Did you find really good deals on something? Did you discover and tips or tricks? Are you a wedding planner and want to just tell me what to do? LET ME KNOW!!! Seriously...I'd love input!!

Ceremony site looking from where we'd be standing to where the guests would be sitting

Looking at where we'd be standing (see the stone at the end?)

Wedding dress shopping!!!!!!! MY FAVORITE PART!!!!!

Fight of My Life

Guest Post by Lindsay Conde

We’ve all been there, well many of us have. You know what I’m talking about, the “wake up and smell my reality” moment. The “whoa”, “ah-hah”, or “holy sh#t” moment. This is specifically the point at which, despite our most valiant efforts to ignore it, the truth about our health situation smacks us right in the face. I, personally, have had two of these. One happened when I was still a “child.” I mean I was 20, but still behaving like a juvenile. The other was more recent, in January it will have been 2 years. Two years since that instant, the smack.

Some choose to look at this experience negatively but not me. Although I do not remember the event fondly, I view it as somewhat of a turning point for me. Here is my story…..

At the time, I was 26 years old, had been married for over 2 years, and had my beautiful son. Life was good and I truly felt blessed. We lived about 30 minutes away from my parents. My CF clinic and doctors were in Nashville, but I had a local doc in Knoxville. I started to come down with something around the second week in January. My usual symptoms: sore throat, increased cough, coughing up more mucus, fever, and lack of energy. So I immediately made an appointment with my doctor. They saw me, prescribed Cipro for 14 days, and sent my sick butt home. After several days of being on the antibiotic, one night my fever spiked big time. I took my O2 sats, to find out that I was at 91, when I usually hover around 97/98. I was having quite a bit of trouble breathing, so my husband took me to the emergency room. On the way, he called my parents and they met us at the hospital. I remember feeling really weak, so much so that they put me in a wheel chair once we entered the ER. But, I had no idea just how bad things would get. In the ER, they took my blood pressure, 02 sats (89), temperature (102.8), all the usual stuff. They also did a chest x-ray and found “double pneumonia”. I was admitted right away and hooked up to an IV for immediate antibiotics and steroids. They put me on oxygen (4-6 liters if I remember correctly) and took a ton of blood. After 5 days in the hospital, my 02 sats had bounced back up to 96, so they discharged me. I was sent home with a PICC line and IV antibiotics and oral steroids. I went home, though I was not feeling much better. (And that was the last time that I ignored my inner voice, my gut telling me what I know is best for me) I was home with my husband and son for 24 hours.

The following evening, the same thing happened all over again. My fever spiked, my sats dropped, and I could not breathe. Once again, my poor husband rushed me to the local ER. Once again I was admitted immediately. Another chest x-ray was done, which showed the pneumonia consuming my lungs. Things were much worse now and my whole body felt it. I was barely conscious, in a lot of pain, and on 6 liters of oxygen. I had never felt so weak and scared. After 4 days in the hospital, I was still sleeping a lot. One morning I awoke to what I think was the sound of the doctor talking to my husband outside my room door. For all I know, I dreamt the whole thing. But in the conversation between a professional and my worried husband, the words “she is not responding to treatment” were mentioned. My husband asked about the options, to be given unappealing choices. It was then that I heard him beg the doctor for more time, more time on the antibiotics. He pleaded with the doc that “my wife is a fighter and is so strong, she can beat this!” I remember at that moment feeling unbelievable fear. This was the first time that oral and IV antibiotics weren’t working.

My health continued to decline and I was just feeling worse and worse. Was it possible that I was not going home? Was I going to die in here? What if I never made it home to hug my little boy again? All these thoughts and questions came flooding into my mind. I was desperately trying to remember the last time I told everyone I loved them, that I hugged them, and expressed how much they mean in my life. Every second spent with my husband and son was flashing before my eyes. The smiles, the laughs, and the tears all seemed so distant but beautiful. I couldn’t possibly say goodbye to my little boy, I had promised to always protect and be there for him. Realistically, if I left him now….he would never have any memory of me.

It was right then that I actually felt myself getting angry. I was angry at my situation and at myself for being so pessimistic. I was also indescribably furious at the idea of never seeing my son graduate high school, never dancing with my sweet husband on our 10^th (or 20^th or 30^th, etc) anniversary, at all the things I would miss out on in my family’s life. Then came a moment of absolute clarity for me. I was dealing with this all wrong. I was looking at the big picture and trying to tackle this monster all at once. Individual’s rarely succeed with that type of strategy. I needed to take control of things one at a time, start with something small and build on that. I was going to beat this, to kick this pneumonia’s ass…but I needed to be realistic about it. It had wore me down, but I was by no means out. I decided right and there that I was going home to my son. I was going to hug him again, and kiss him, and play with him. No matter how much time it took, I was going to conquer this demon and find my way back to he and my husband and our (semi) normal life. So when my husband came back into my hospital room, I asked him to bring me something from home. It may sound silly or even trivial, but I asked him to bring me my makeup bag. My plan was to start feeling better on the outside in order to gain back my strength and heal the inside. So when he came back with that makeup bag, I asked him to help me take a shower. He so lovingly did, and then helped me blow dry my hair, and put on some makeup.

I was in the hospital for a total of 3 and ½ weeks, but I made it home. When I walked through that front door, I wasn’t 100% back to my old self. I still had my PICC line and my regiment of treatments and meds to do several times a day. But I was better and continuing to improve. I have never really been the type of person that allows other people to dictate my capabilities. Once I set my mind to do something, it gets done! That’s part of why I fell in love with my husband, because he is the same way. We sit around occasionally and talk about how hard that time was and how scared we both were. But I know, that with the right mindset, him by my side, and my family in my corner…..I can take on the world

Bio: Hello Everyone! My name is Lindsay and I am 28 years old and living with CF. I was diagnosed as an infant, after my older sister passed away from CF when she was just 5 months old. So, that makes me the oldest of 3 siblings in my family that deal with Cystic Fibrosis everyday. Life has most definitely been full of its' challenges, but also its' blessings. If you would like to know more about me, or about my "challenges", feel free to ask :) Until then, I am so happy to be here and would love to get to know you all.

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?

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???

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!

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? :)

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!

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 www.InhalingLife.com.

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.

Question from Researcher

Happy Saturday!!! I was recently contacted by a researcher who is gathering info for her PhD. She asked some questions that I've decided to turn over to the community. I appreciate you guys taking the time to think about the following question and give it your most thoughtful response. I think it is always wise for us to help out anybody doing any type of research on Cystic Fibrosis-whether the physical, mental or spiritual affects of the disease. Just in case your curious, I'm not getting paid to participate and either are you :)

Question 1. In your blog you often mention your body, or parts of your body. You talk about running to keep your body healthy, you talk about feeling pain, fatigue, feeling out of breath and you talk about pushing through those feelings to go running or walking to stay healthy. Your most recent posts have been about getting your body healthy, about how the different drugs are making your body feel, concerns about how they might affect your body and so on.

I am interested in finding out how people with CF experience their bodies. Not symptoms of CF but the thoughts, feelings, and ideas about your body that having CF and also dealing with CF in everyday life brings up for you.

For example, I have some problems in my neck and shoulders and it has really changed the way I see my body, and not only that, but my outlook on life. I thought it was strong and would last forever and all i had to do was feed it and sleep. Now I know that you can't rely on anything to stay the same or be what you expected. I know your body is something you have to care for. Sometimes I feel angry, sad or frightened when I am in pain and can't sleep or do my work. I feel frustrated and disappointed when it interfere with my plans. Sometimes I feel excited because I think my body is teaching me important lessons about life - how you can't put too much store in plans for the future for example. So these are some of the thoughts, feelings and ideas that my body brings up for me.

Bio: I am an Australian health researcher and have been doing research with people with CF since 2006. I do social research, not the treatments or laboratory research, which aims to understand about people's lives, their experiences and perspectives. My current project is my PhD in which I am trying to understand the experience of being an adult with CF. The idea is to gather, in a 'scientific' kind of way the sort of information that can give doctors, nurses, policy-makers and so on an insight into the more personal aspects of managing and living with CF in adulthood as opposed to the medical bits. I hope this sort of research will eventually lead to more appropriate treatments, better relations with medical professionals, better health policy and community support. I have contacted Ronnie to help me thrash out some of the ideas that are coming up in my research

So, what do you guys think? Do you have any answers to "how you experience your body" as a result of CF?

The First Time I Ever Had to Give a Robbery Update

Can't believe I'm giving you a robbery update, but then again, it's turning out to be a pretty cool story. It's a strange but little and connected world we live in. Also, big shout-outs to Courtney and Chris for the sweet care package that I just got in the mail. Seriously you guys??? Too much, but I REALLY appreciate it.

Aztreonam One Step Closer to FDA Approval!!!

GREAT news for the CF community!!! FDA panel says Gilead drug aztreonam aids cystic fibrosis patients. We're one step closer to having this drug available to the community!!!!

http://www.reuters.com/article/idUSN1023955020091210

A U.S. Food and Drug Administration advisory panel on Thursday said it found Gilead Sciences Inc's (GILD.O) aztreonam was an effective new treatment for life-threatening lung infections in cystic fibrosis patients.

The drug won marketing approval in September in Europe and Canada under the brand name Cayston.

The anti-infective drugs panel's finding on a vote of 15-2 that the drug is safe and effective serves as a recommendation that the FDA approve the drug. While the agency is not required to follow an advisory panel's recommendation, the panel's opinion carries great weight.

The panel said the safety and efficacy involved a 75 milligram dose administered three times a day to aid in improvement of respiratory symptoms and lung function.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 70,000 people worldwide, according to the Cystic Fibrosis Foundation. A defective gene and the protein it produces cause the body to produce thick, sticky mucus that clogs the lungs, leads to life-threatening lung infections and obstructs the pancreas.

Azteronam is designed to treat lung infections in these patients caused by common pseudomonas aeruginosa bacteria, for which there are few inhaled antibiotics available.

Aztreonam sales could reach at least $200 million globally by 2015, according to Summer Street Research analyst Carol Werther. The medicine could strengthen Gilead's pulmonary franchise but pales in importance when compared with its stable of HIV drugs, Werther said.

Dr. Bruce Marshall of the Cystic Fibrosis Foundation urged FDA to approve the drug swiftly and told the panel: "There is a desperate need for additional inhaled antibiotics."

Drug resistance is a complication in treatment for these patients.

Thankful for a Head Cold???

No matter what is going on, there is ALWAYS something to be thankful for! Even if it doesn't seem like it at the time, the challenges that we push through can provide many reasons to be thankful in the future. Each day that we are shaped by adversity, makes us a day closer to knowing who we truly are....

Wordy Wednesday by Mandi

Mandi gave me a nice little surprise by filling in for me today! I'm always trying to get her to do a video blog, so I'm glad she finally stepped it up! I'd say for her first time around the block she did great!!!

So, how would you rate Mandi's first video post?

10= Ronnie should never again do video posts.

5= We'd like to see more of Mandi on video but keep Ronnie.

1= Seriously Mandi, please don't touch the camera again.

CF Concert Series Thank You!!!!!

Sorry if you're here expecting another installment of "Top Ten Tuesday" but I thought I'd put up this video instead. This is a "thank you" video going out to the volunteers who gave of their time at the CF Concert Series this year in Dallas, Texas. It was a great event that Mandi and I were absolutely honored to be a part of. We brought our foundation CysticLife out to the event to act as the CF "awareness and education" police to make sure people knew why they were all crammed into a concert hall! The concert was a lot of fun and I was able to meet some CF families, that I had known through FB, face-to-face. I'd call the entire weekend a smashing success...can't wait until next year!!!!!!

PMS: Prednisone Mood Swings

I had a first this last week. It was the first week I ever dated myself while on my period. "WHAT ARE YOU TALKING ABOUT??" you ask? Let me explain...

As many of you know, Ronnie decided to do a burst of Prednisone to get rid of some of the inflammation in his lungs. AND, as many of you know, Prednisone makes people irritable. Well I found out this week that apparently Ronnie is no different than the average bear when it comes to how Prednisone effects him. He is on edge, a little snappy with me, and nothing is wrong, per-say, but nothing is quite right. It is SO foreign to me to experience him like that. If you know Ronnie, even in the slightest, you know it is HARD to get a rise out of him. I can TRY to and still can't. But since he started Prednisone, it is all too easy. Yesterday, I'd had my fill. I was frustrated that he was not being his typical self. I was annoyed that he wasn't quite as loving towards me as usual. I was sad that he seemed a little agitated with me.

And then it hit me...this must be what it's like dating me once a month. Talk about a wake up call. It made me rethink my frustration with his sudden attitude change. I actually began to feel a little guilty. I began to think, "well shoot, if he can put up with this 12 times a year, I can put up with it a few times a year."

For those of you who have never been on Prednisone and want a little more details about it's side effects, I here is a link from webMD of all the side effects. And below I've listed some that Ronnie seems to be experiencing (from my perspective):

• Increased Hunger
• Visible Water Retention
• Mood Changes
• Temporary Redness of Face and Neck
• Not Feeling Well

Needless to say, I'm excited for his burst of Prednisone to be over, but I'm glad I got a little insight into what it must be like to date me once a month and I hope I remember this down the road, to be sure to curb my own PMS. I must say though, he is REALLY trying. I can tell he is making an extra effort to keep his agitation inside and that he's going out of his way to love on me when he catches himself getting snappy. And that makes me feel a lot better. Regardless though, I'll be happy when Prednisone gives me my fiance back!!!

My House was Robbed...

...and there is nothing that I can do about it in here, so let's move on!! I still have a house to go home to and I'm much more concerned about going to that house with good lung function, than I am to returning to my TV.

PICC Line in the Neck!!!

Sometimes the right foot NEVER seems to know what the left foot is doing here in the hospital. After a series of ball-dropping, x-ray delaying and boondoggling, I'm now stuck with a PICC line that can't be used. So now I have a new IV and must wait until Monday to get this PICC line fixed. Oh what a beautiful day!!!!

Any "nice" hospital stories for me???

First Ever Sinus Irrigation

The doctors did a head CT because I was having some killer headaches. Turns out, my sinuses are chalked full of goobery goos. It's pretty common in us old CFers to have some sinus issues. Before this, I have had some polyps yanked out, but that's been over 15 years ago. So sit back, grab some popcorn and enjoy this fine film.

Have you guys had some experience with this??? How did you feel after these nasal washes?? Feel a difference, and if so, how long did it take?

Always Something to be Thankful For!!!!

Thankful Thursday is upon us!!!! First day of prednisone was a success and it feels like I'm finally getting air into my bases! Check out the video below :)

So, what are you thankful for today?

We Have a Plan!!!!

Alright, so we have a plan! With a few adjustments and my fiancee here, I should get these numbers back up in no time!!! There was some miscommunication in my medical files that got cleared up so, we have one more weapon now to kick this PA in the butt. It's important that we all take control of our own health and know our own history so this kind of stuff doesn't happen. Partly my fault, partly theirs, no big deal. The new battle starts TODAY!!!

Better than a Sharp Stick in the Eye!!!!

So I did my PFTs again yesterday and didn't exactly get the result I was looking for. They went down again as they did last week. I have now dropped 12% of lung function while I've been in the Hole. No problem though, this just gives me the opportunity to work my butt off and get these numbers back up! Check out the video below:

Let's hear em! What suggestions do you guys have for me? If you were playing doctor, what would you do???

My First Race Ever!!!

by Mandi from Shanghai

I did it!! I ran in my first running race ever, a half marathon. I must say, I always thought 13.2 miles didn't sound like a very long way to go, but 2 hours and 4 minutes later, it felt long....but let me back up a little and tell you how it all went down.

My brother, Josh, dad and I all ran (not together though because they run WAY faster). So we all got up at 5:30, got dressed, ate a few pieces of toast with honey on it, and got pumped with the music blaring in my parents apartment (I'm sure their neighbors loved us). We headed out at 6:30 for the start line. When we pulled off, there was a fury of activity. Teams of people jogging, jumping, anxiously waiting. Josh, Dad and I did a quick jog down a side street (I popped a squat because I knew I would never be able to hold it and there were no port-a-potties in sight). We jogged back, and jumped the gate where everyone was lined up. We all stood stretching and chatting with my Uncle Scott and mom until we heard the Chinese national anthem being played. We got quiet as all the runners sang along with their national anthem and then in words I didn't understand, they announced the race was starting. Off we went, walking. It was too packed in their to actually run at first, but as we crossed the actual starting line we were able to break into a run.

Josh and Dad were out of eye shot within the first few minutes and then it was just me, my ipod and my self-talk. I kept my mind busy by singing along with songs, making a note of the funny things I saw, and yelling at myself in my own head. I was passing a good number of people, which felt awesome and made me feel like I was off to a good start, but my cockiness would soon be shattered when I would see the least athletic looking Chinese woman speed walking by me or a 4 ft 5 in. barefoot man pass me. I had no clue how fast I was running, but I felt like I was moving at an ok pace. At about 12km my mom and uncle were there and ran beside me for a few minutes. My uncle said, "you're moving at a good pace, you're just about 5 minutes behind Josh and your dad." To which I responded, "really? They must be hurting" (because something had to be wrong if I was that close to them). He said they looked great. That gave me a little hope that I was maybe moving at a good pace. My first indication of my pace was when I saw a sign that said 15km and had a time on it of 1:28:05. I thought to myself, "awesome, that means my pace is....shoot, how many km are in a mile??" Then it began, the mental math that lasted the last 30 minutes of the race. Wondering how far I had left to go. Each km marker I would calculate using the logic, "well if a 5K is 3.2 then a 10K is a 6.4 and that means...." Some of you know, that's WRONG. When I got to km marker 20 I thought ok good, just 4 minutes left. WRONG. I had gotten my numbers wrong, so as what felt like 4 minutes came and went and my legs were hurting more than I could bare I was ticked. "How much farther is it??? Am I totally off in my calculations? I can't be too far off!!" I decided ok, I'll just walk for one second or at least run SLOWLY. As I slowed down to a jog, I felt a man push on my back and say something in Chinese. I looked over and he said something again, still with his hand pushing me. I said thank you a few times in Chinese and he smiled. I realized I was actually not that far from the end. So I pushed it. I finally saw the finish and pushed it even harder. I saw 2:06:something on the clock and was happy. I just wanted to finish under 2:10 and I did. Not to mention I didn't start at the time the race clock started, so I knew I had done even better than that.

When I got my "everyone gets one" medal and a paper with my actual time I saw it was 2:04:something, I was happy but wondered, "shoot, could I have run 4 minutes faster? Maybe next time!" And that was it. My first race was over.

I thought I would throw this in so you could see a "dressing room" in China :)

Three Words: The Thoughts of a Cyster

Guest Post by Lindsay Conde

Do you ever feel like a sheet of ice floating around in the arctic? Cracks develop, sections begin to melt, pieces start to drift away from the base…..all the while, you feel helpless to stop the chunks from being washed away. Well, maybe an ice sheet isn’t the best analogy for me, I don’t think of myself as cold or frigid. But the comparison works on a certain level. Sometimes, because of stress or challenges or just life, you begin to slowly lose pieces of yourself. These parts are vital to the survival of the ice sheet or person as a whole. A big, strong slab of ice will fare much better in the dangerous waters of the arctic than some tiny, thin slice of ice. So how can we stop this? How can we keep ourselves in one piece through the calm seas AND tidal waves of life? Because, make no mistake, they are both out there waiting for us…

For me, the answer lies in what holds me together and keeps me going. What is the “crazy glue” in my life that allows me to keep on, keeping on?
In three words………FAMILY, LOVE, and LAUGHTER!

My FAMILY is everything to me. I have an amazing husband and two beautiful little boys. I am thankful every single day that I have these three men in my life. But my deep family connection began long before I ever met my husband. I grew up in a beautifully large and unique family. I have two parents that have been married for 37 years (to each other, lol), created a strong family foundation with their blood, sweat, and eternal love, and would do anything for each other and their children. These parents of ours CHOSE to have a big family, resulting in 13 pregnancies. Years later, there are 10 of us “crazy” kids/adults that represent our clan. The oldest is 36 and the youngest is now 14. Out of 10 children, 3 of us spend each and every day fighting Cystic Fibrosis. The disease does not afflict every member of our family, but it does affect us all. We may be older, have separate and busy lives, and sometimes even conflicts with each other….but one thing has always remained the same…our love and devotion to our family. We have made a point, as a family, to celebrate life’s moments (big and small) and supporting each other through life’s disappointments and challenges. Individuals throughout my life, have teased me about my big family or inquired as to whether or not I would have such a large family myself. The jokes never really upset me much, because though our family is big in number (and growing constantly) it is also full of soul and so much heart. Each member of this circle brings along with it such unique personality and a different human dynamic. And although we may not always see eye-to-eye, the circle would be far from complete without each individual’s contribution.

My husband, Alex, and I have begun and will continue to focus on the same priorities for our own little family. Yes it is true that money is what motivates our society, jobs are a necessity, and bills have to be paid. But life should not revolve around such things, if so, it is a life wasted. We want to instill in our boys the strong family ties, devotion, and unconditional love that we both believe is so essential to a successful and happy life. It is true that “Home is where the heart is.” So I keep my family forever in my heart, because they are where my home is!

This brings me to LOVE and LAUGHTER!! I learned at a very young age that laughter heals, memories last forever, and love is more powerful than hate. Love makes the world go round. The world can move for love and kneels before it. Don’t get me wrong, hate is also a very powerful thing. But love sets you free and opens new dimensions within yourself, while hate closes you off and hardens you. Now, that’s not to say that my life and it’s many challenges have been all rainbows and skipping through meadows. I have had my angry or bad days. Those days, I spent wondering “why me?” or focusing on what hurdle I would have to try to leap over next. Some of them have even revolved around crying and thoughts of what my children will do without their mother. It’s funny, when you love someone so much, you almost become conceited and selfish about that love. You feel like that no one can love them, look after them, and take care of them like you can. You want them to truly know you, love you, and remember you forever. But the truth is (for me), my time is better spent living each day one at a time, than thinking ahead to the heartache I may leave behind. I can better serve my husband, my boys, myself, and the rest of my family by making memories, laughing, crying, dancing, snuggling, enjoying the little things, and most of all….living. Because, in the end, no matter how much time we have together, the memories are what we are left with…so we have to make them unforgettable! I have made the choice to live, laugh, and love with my whole heart. And if I make that happen, then I will have no regrets in my life.

Time does heal all wounds, but laughter can sometimes be the best medicine. A good laugh with friends or family or even at yourself can unburden your mind and give you back a piece of your happiness. Someone once said, that if they didn’t laugh, they would cry all the time. So it may seem silly, but I choose to lighten the mood as often as possible, especially in challenging times…with a funny joke, stupid impression, or even just a silly face that makes my boys giggle. We may not have control over the hand we are dealt in life, but we “for damn sure” have control over how we choose to play it! So, while we are forced to make car payments, pay rent, and buy groceries………I’m going to play my cards as follows….

*Drive that car to take amazing trips with my boys, like to the Chattanooga Aquarium this weekend.

*Decorate our house like crazy with lights and trees and tinsel, to make the holidays exciting and special for my family.

*And use those groceries to create delicious (and mostly healthy) meals that will bring us to the dinner table together and nourish our bodies and souls!

Bio: Hello Everyone! My name is Lindsay and I am 28 years old and living with CF. I was diagnosed as an infant, after my older sister passed away from CF when she was just 5 months old. So, that makes me the oldest of 3 siblings in my family that deal with Cystic Fibrosis everyday. Life has most definitely been full of its' challenges, but also its' blessings. If you would like to know more about me, or about my "challenges", feel free to ask :) Until then, I am so happy to be here and would love to get to know you all.