How Can I Simply Be Abby?

I often get emails asking for my opinion or advice on different topics surrounding the life of a CFer. Most of them I will answer directly and you guys never see them. Once in a while however, I get a question that I believe needs to be answered and addressed by the community. This is one of those times. I received this email yesterday by a high school girl named Abby (I changed her name for privacy sake). I know that many of us have been in this exact same position before and would have killed to hear the advice of other "older and wiser" CFers. I figured that the more insight she had on this particular subject the better. I also have a feeling that there are about 1000 "right" answers out there. Let's come together as a community and help this cyster out! Please read this short email and respond however you see fit. Thank you.

I have one question today.

You've inspired me. I wanna make the change in my life, to not let CF rule who i am, I let it define me and who i am way to often. I just don't know how to become simply "Abby" now that I've always been "Abby with that lung disease" .

Suggestions on how to change it ?

So, what do you guys think? How do you have CF without being CF? Is there a way to be different without being treated differently? I really appreciate you guys taking the time to answer this question!!!

I Got Hit by a Truck

Day 2: So before you panic, I actually didn't get hit by a truck, but it sure feels like I did. I like to call it the old "antibiotic blues".

Now join me in the (Hospital) Run/Walk Challenge! BTW, does anybody have a more clever name for that? The ____ ____ _____ Challenge! Ideas???

Relationships and CF

**This post was written a handful of months ago. I thought I would re-post it because it's timely and I'm tired :)**

I asked my readers to throw some topics my way to write about so I figured I would tackle the following...

Reader:

I have read a few of your blogs and I love that you have made the choice to refurbish your life by working out. My girlfriend Heather came on here and made a few friends, as well as me, before she left us a few short months ago. I have been going through alot lately and since you asked for suggestions about things to write about I thought one up. How has your life with Mandi been through the ups and downs of everything to do with CF. I know i went through alot with Heather and those years are starting to catch up to me now that shes gone. I know its alot to think about, but i figured i'd try to give you somethin to think/talk about on your blog.

Well, first, I thank you for your kind comments and choosing to read this blog. I'm sorry for your loss but I'm also thankful that you were able to spend 4 great years with Heather. I'm sure she was a huge blessing in your life and a time that you will remember forever. Everybody who is afflicted with CF seem to be special in there own way and are often a blessing to anybody who knows them.

Now onto Mandi and I. Well first off, I have to point out that Mandi and I have only been dating for a year. But when we met it was an instant connection and have probably done more as a couple in this last year than most couples do in 10. We've been to 14 different states, China, Mexico, Canada and have been extremely blessed to be able to spend so much time together.

I met Mandi about 6 months prior to actually sitting down and talking with her, but I was in another relationship and the meeting was brief. I ran into her again after my previous relationship ended when I met up with some friends for a movie. She is actually the little sister of a friend of mine, so the thought of her being "dateable" never entered my mind. We ended up kind of gravitating towards each other and spoke most of the night. Like a fool, I spent most of the night talking about my ex! Again, I stress, I wasn't looking at her in that light and I wasn't looking to get into another relationship. But when I actually started to get to know her and spend more time with her, that all changed. That first weekend I'm pretty sure we talked for 48 hours straight. I was smitten very early on but of course had to play it cool. I mean, what's wrong with me being chased right? Luckily, Mandi was up to the challenge and I'm very thankful that she didn't call my bluff :)

I was very open about my CF from the very first moment we met. The second night that we got together we really dove in head first to the subject. I had touched on it our first conversation, but we were busy talking about past relationships so it was brought up more in passing. When I did start to talk about it, Mandi of course had many questions, but she took every answer in stride. I found out later that she googled what CF was and was little shocked with how the internet made it sound and with how I made it sound. She has now learned that CF not only affects people physically in many different ways, but also mentally. For me, I've never been doom and gloom about it. CF is a challenge, sometimes it a very difficult one, but sometimes I don't even know it's there.

CF has provided many positives in my life as well and Mandi has mentioned many times that she can see the ways that CF has molded my outlook and personality. I honestly don't know what kind of person I would be without CF. If I had to guess though, I really don't think I would be a person that people would want to be around. Now, people seem to gravitate towards me because of my positive outlook and my zest for life. Without CF, who knows if I would have those same attitudes. I think I would take a lot of things for granted and probably not appreciate my friends and family like I do now.

Ok, now that I have successfully NOT answered your question, let me attempt an answer. Point bank: Mandi is my rock. I had my mom to lean on for so many years (and still do) that I knew that I would need a strong and confident woman in my life in order to make a relationship work long term. I needed someone who was comfortable in their own skin and could stand their ground, but also, one who is sensitive enough to "baby me" when I'm not feeling up to snuff. Mandi does the perfect job of "kicking me in the butt, but then bringing me ice". She motivates me and pushes me to know end, but she's there to comfort me when I just can't push any harder.

As far as up and downs, Mandi has handled them like a champ. I know it's sound crazy, but Mandi has already mentioned that she is comfortable with the idea of possibly being a widow at a young age. We of course aren't planning our lives for that to happen,, but we both realize that anything is possible with this unpredictable disease. Mandi not only embraces all of the positive affects that CF has on my life, but the negatives as well. She is the ultimate at just rolling with the punches. Sometimes you can tell she's a bit worried or stressed, but that's where we balance each other out. I don't stress or worry about a thing. When you're told from a very young age that "you probably won't live a normal or long life" you tend to not sweat the small stuff. To be honest, I don't sweat the big stuff either. I'm too busy living my life to the fullest to worry about all of that stuff.

Mandi has seem me at my sickest and handled it like a champ. She almost had no choice though. I never waivered in knowing that I would recover fully and work my butt off until I did. She is a huge reason why I have been able to recover so quickly though. She pushes me everyday and hold me accountable to workout and do my treatments. She really doesn't have to push that hard though, cause since meeting her, I have yet another reason to live.

I'm Sick and it's My Fault

So I head in for some PFTs today (just as a formality) so I can get myself a bed in The Hole ASAP. I've definitely taken a hit this last month with my overall health. If you remember my post from last week, my PFTs were also down about 10% from last month and I'm having hemoptysis. I knew that I was going to have to get in sooner rather than later, but I was hoping to hold off until after Thanksgiving. It's gotten to the point though that I know damage is being done and now I just have to nip it in the bud. The biggest problem has been my lack of energy. And with me, a lack of energy can be a killer...well, let's hope it's not that bad :)

Everything kind of slowly goes downhill when I start missing my runs and workouts. With all of the traveling I've been doing lately, my schedule has been all over the place. I mean, I brought my running shoes to Dallas with me, but did I use them? NOPE. And that's completely on me. I can't blame lack of time. I can't blame weather. I can't blame how I feel. There's nothing to blame but the guy I see in the mirror everyday. Cause here's the deal: I've managed to run when I had even less time, there was worse weather AND I felt even crappier. So there is only one thing left to blame: Ronnie. I've made choices over this last month that have allowed my lung function to slip. I could have pushed harder. I could have scaled back on work. I could have went to bed earlier. There's a million things I could have done differently, but I chose a different way.

Now I have another choice to make: I can sit here and sulk and wonder how things would be different without CF or I can learn from how I'm feeling right now and realize that I don't like it and I CAN control the outcome next time. I'll pick option number two. If I sit around and wonder why, I'll be wondering the same things on my death bed. I don't see the point in asking a question that really doesn't have an answer...and to be frank, if it did have an answer, I wouldn't care what it is. All of this "feeling sick" crap is what actually makes life even more interesting for me. With everyday that passes, I'm learning a little more about myself and my opponent. The fact that I get to face a "challenge" everyday is something that I thrive on. It drives me like you would never believe to prove all of the statistics, numbers and nay sayers wrong. If I lose this challenge, I can guarantee you it won't be Cystic Fibrosis' fault...it will be mine.

Top Ten Pictures from Dallas

These are the top ten (plus some bonuses) pictures from Dallas either because of their meaning, the moment when the picture was taken or because I think it's a cool picture. There are of course a ton more that I will get around to loading onto Facebook at some point in the future. But for now, here are the top ten in no particular order...oh yeah, and some extras.

Apparently this guy didn't see the sign.

One of my most favoritest pictures that Mandi took of her ring...of the 4000 or so.

Mandi proudly pointing to the banner she designed while in the car heading to California.

Treatment time has been, and will continue to be, one of our most favorite times together

We had straws on the CysticLife table that we invited patrons of the concert to breathe through. This is a picture of them.

Rhett Miller gave an absolutely great show!

She's always a happy girl!

Pretty sure this was right before our big date Sunday night...

...and this is me trying to elongate my neck since it always looks so fat in pictures.

I love this picture cause it shows me focused on work, while Mandi is focused on watching the engagement video for the 300th time.

We went to Cafe Brasil every singe morning that we were there. It was AWESOME!!!

Mandi at the CysticLife table.

Me at the CysticLife table.

The concert was at the Granada Theater. This is me trying to look awesome.

That's me and Lindsey pointing out the star of the show. If you're wondering who Lindsey is, she was the rockstar who put the concert together. Thanks so much Nay Nay!!!!

Rondi Engaged: My Perspective

We decided (upon Ronnie’s suggestion) to hike McDowell Mountain, a mountain which boasts a 2.2 mile trail, one way, to Sunrise Peak. Under the guise of taking many pictures for his blog post Friday, which would be about our first hike together (McDowell Mountain) after he got out of the hospital in March. We made our way up the trail, stopping every so often to take in the sights and allow Ronnie to catch his breath. We stopped briefly at a lower city overlook and I thought to myself, “ooo maybe Ronnie will want to stop here,” as I was a little chilly and my legs were tired because I had run that morning. But Ronnie wanted to go to the peak, so to the peak we went.

When we got to the top, Ronnie seemed to be in NO hurry to go back down. He said how tired he was and how much he wanted to enjoy the view since he made it up there. As we sat on the rocks, Ronnie below me a few stones, with his back against my knees, we relished in how beautiful it was up there. We were not alone however, as we looked around we noticed another couple sitting about 50 ft away from us...making out HARD CORE. Talk about awkward. I joked about how in love they looked as I sat and picked at Ronnie’s face. (Which by the way, is why in the video I said, “Hey babe, where do you think that plane is going”...as I picked his face he kept trying to distract me by asking where I thought certain planes were headed). Ronnie kept saying that he wanted to stay longer...I, on the other hand, was FREEZING and hoping he would be done taking in all the sights soon.

After 30 minutes or so at the top, it appeared Ronnie had his fill and he got up saying, “Lets just take a few more photos.” I got up and stood where you all saw the video shot. You can see the rest of what actually happened on the video...but I will give you a little bit of my thoughts since those you can’t see. As Ronnie “tried to figure out the self timer” I did think to myself, “hm, that’s weird...is something up?” But I quickly dismissed my hopeful thoughts because earlier in the week he “managed my expectations” (as he said) by telling me that he had looked at some rings but that he wanted to get one custom made so it would be at least 3 weeks from the time he found a diamond. When he said, “Hey honey...” after his “third picture attempt” I instantly got a rush through my whole body of, “OH MY GOODNESS, maybe this is it.” I was careful to get to excited at first however, as Ronnie has acted like he was about to pop the question or had a ring in his pocket many times before. Once he was down on one knee, before I really saw his face, I thought, “if he’s messing with me I’m going to be so ticked” and then I saw his face, tears welling up in his eyes, and I knew he wasn’t messing with me this time. A lump came to my throat instantly as I realized this was the moment that I’d wanted for so long. A moment that would start a chain reaction of many more wonder moments together. I wanted to cry and scream all at the same time. I must say, I totally blacked out. I heard every other word because I was on overload as I was trying to take in everything...study his face, remember the smell, hear the words, bookmark the feeling (I was thrilled to find out that it was all on film, that way I had something better than my own memory to remember it all by). As he paused before speaking the words I waited to hear since the day I met him, I thought to myself, “shoot, did he forget to actually ask?? Should I just say yes??” My legs where shaking, I wanted to jump up and down...I waited. It felt like an eternity! But then he spoke the words and they sounded even better than I imagined. “YES!!” (or I think I actually said “yeah”)

You saw the rest...I wanted the moment to last forever. I no longer felt cold. I didn’t want to walk back down the mountain as we stood up on top of the world just the two of us. We hugged. We kissed. I screamed, A LOT. It was the best feeling I’ve ever felt. A feeling that I could never put into words. One of relief, that I had found my soulmate, and he felt the same. A feeling of excitement, for the adventure we were beginning together. A feeling of thankfulness, that God had brought this special man into my life, and would bless me so much to make him my fiance, and ultimately, my husband. My heart felt so full with love for a man that has changed my whole perspective on life and love.

As we made our way back down the mountain, trying to find our way in the dark a woman came towards us yelling, “are you the last ones?” She was in charge of making sure the last on the mountain got back down safely each night. And as we shuffled down in the dark I thought about what Ronnie had said when we were up there. He said he proposed on the top of a mountain because I help him climb mountains everyday...help him through the challenges he faces...and it was so true. Our relationship will be much like that mountain that we got engaged on top of. It would be a descent at times, easy and smooth. Other times it will be an incline, tough and tiring. But there will be awesome views from the top, a hand to hold, and a guide to show us the way when we can’t see the path on our own in the dark.

A Mother's Manual for Cystic Fibrosis

Before I was diagnosed, nobody knew what was going on. I didn’t show typical symptoms of CF. I had a rash from head to toe, was very cranky, and due to an inability to keep food down, dropped close to my birth weight. I went to different doctors, all of which had different opinions. One doctor blamed my “failure to thrive” on my mother’s breast milk, another thought it was allergies. At six months of age, after months of guess and check, I was taken to University Medical Center in Tucson, Arizona at the behest of my military doctors. There I was diagnosed with Cystic Fibrosis. Legend goes that I tested positive several times for the disease, but the doctors hesitated to believe the results due to my a-typical symptoms. My case was actually written up in a medical journal because of my unique manifestations of the illness at a very young age. And so the journey began.

Once I was diagnosed, my mother was frightened and confused. She had never heard of CF and with a life expectancy of 20, the outlook was grim. In 1980, the year of my birth, about 4% of people born with CF died in their first year. Being told that you will outlive your child is something that any parent would dread hearing. Doctors didn't stop there however. The list of "certainties" my mother was told only went on: “Your baby isn’t in perfect health”. “Don’t expect a normal life for your child”. “Your child isn’t like other children.” “There’s a good chance your son won’t live long enough to graduate from high school”. “Your son will have limitations on what he wants to do with his life”. “Consider yourself blessed if he sees his twenties”. I often think back to that time (by putting myself in my mother’s shoes) and feel extreme sadness for what my mom must have been going through. Here she was a 24-year-old woman, with a husband who was constantly away on military duty and obligations, with a sick child and information that didn’t paint a pretty picture.

Motherhood, for most, is a time filled with joy and excitement. But what about the few mothers who are faced with the unexpected? The potentially devastating? Some women were created to face these challenges, I'm lucky enough to call one of those women Mom.

I thank God everyday for my mom. My mom was the perfect woman to be put into this “dire” situation. There was no way in the world she was going to let me be a statistic. We were, together, going to face this disease head on. She has been the best teammate a (sick)boy could ask for. I had CF; CF wasn't going to have me. Our attitude, our efforts, and our determination would directly effect my quality of life. Want to know where my outlook on CF came from? Her name is Christine. She has never, ever, let me view CF as a crutch or curse. She never treated me differently because of CF. Is there a manual on how to raise a child with CF? No, but my mom sure should write one. She threw out all of the "certainties" doctors burdened her with, but allowed one piece of advice to mold her mindset. He said, “Listen, Ronnie has a physical disability, but you don’t have to make him mentally disabled as well.” With that, my mom decided to do what I feel she was born to do, just be a mother.

Parents, Would You Roll the Dice on CF?

**I posted this a couple of months ago and got a great response. I thought I'd give it another go around this week. Make sure you take the time to read through the comments too!**

I would really really really like all of your opinions on the following article...

Should Bad Genes Mean No More Kids?

THURSDAY, SEPTEMBER 24, 2009

filed under: health

My husband and I chose to have more kids, knowing we have a 25% chance of having another child with cystic fibrosis. Are we selfish?

Maybe, but I think my daughters are pretty grateful to be here.

Homeschool Mom: Is it selfish to have more kids when you know you and your husband have a bad gene and you have already passed it on to two kids? Frankly, I'm not sure. I know I love my kids and I am taking care of their health needs and they are growing and thriving, but I also know that they have a big burden in their lives. I have the burden as well, of course, but it is different when you are the person who is suffering with the physical symptoms. They definitely feel the burden, they deal with it, and they are not happy dealing with it. In fact, I asked each of my children with cystic fibrosis if they could change one thing about their lives, what it would be. Each one said they would want to be free of CF. My husband and I have the same wish. Even the youngest, who does not have it, said her second wish would be that her siblings no longer had CF (her first being that she wants a pony).

Let's face it, having a chronic illness that demands many inhaled breathing treatments, oral drugs, sometimes intravenous drugs, and hospital stays, and which causes you to have pancreatic insufficiency so you have to take pills every time you eat, plus a host of other symptoms and problems that would take up my entire page, is not fun. But does that mean that never having been born would have been better? Well, how can anyone truthfully ever know?

I do know my children are happy and as healthy as their friends. Their condition does not prevent them from doing anything. They do have to work hard to maintain their health, and they have to see many doctors on a regular basis, but for now they are as energetic and exhausting as any other kids. The tragedy would be if their health deteriorates while they are young and they succumb to CF. Obviously that is not something I contemplate too often, because it would be heartbreaking, but when I really consider it, I know that a tragic end does not mean a life was meaningless, it means a tragedy has occurred.

There are no guarantees when you have a child. I remember when I heard about the Christian singer Steven Curtis Chapman, who lost his 5-year-old daughter when his son hit her while backing out of the driveway. Who could foresee such a tragedy? Children get cancer and other illnesses, and sometimes they die horribly and painfully. We do the best we can with our children's difficulties. I think my husband and I are good and loving parents who try to do the very best for our children. I would take my children's illness upon myself if I could. I would give my life for them, but I would never give them up, nor second-guess a decision to have given them life in the first place. The world is a better place because my children are in it, and you should all just count your blessings they are here!

Follow up questions:

What would your decision be?

Would you have more children?

CFers, how would you feel if you knew your parents made that choice?

Any parents out there struggling with this very issue?

I would love your feedback on this issue guys, so please, comment away!!!

Great Opportunity for CF Awareness

Here's some of the things that I'm so thankful for today....

I would be remiss if I didn't acknowledge how thankful I am for all of those who have served in our great military. I have many family members who have served honorably (and continue to do till this day) and am humbled by the dedication they have to serve. My dad retired a Chief Master Sergeant in the United States Air Force a handful of years back and his retirement ceremony continues to be one of the most emotional days that I've ever had. I can say without a doubt, that I was more proud of my dad that day than I have ever been before. To see how many lives he had touched during his military career was truly breathtaking. So to all of the men and women who serve this great country of ours and protect freedoms that I take for granted every day, THANK YOU!!!

I'm so thankful for my positive support system that has grown online. I've always had great family and friends that have been there for me and root me on like nobody's business, but it's nice to feel all of love coming from parts of the CF community. Like all of my other fibros and cysters know, you'll never really get it, unless you're in it. The fact that I have so many of you cheering me on that have been there and feel what I feel means the world to me. You'll never truly know what it means to me and I only hope that I can support and inspire all you as much as you have supported and inspired me.

I'm so thankful for the opportunity that Mandi and I have coming up this weekend in Dallas, Texas. We've been invited to be the "CF Education and Information" czars at an event called the CF Concert Series. I just hope that when people walk away from that event, they'll know more about CF than when they came. And if things go really well, we'll be able to plant a seed in those people that not only make them feel compelled to learn more about Cystic Fibrosis, but to pass that knowledge on to friends and family. A cure for CF starts with awareness and we hope to be able to create much of it at this event.

Down, but NEVER Out!

So as many of you know already, I took my PFTs again yesterday. Would you like the good news or the "bad" news? I'll go ahead and give you the "bad" news first. My PFTs were down. They went from a FVC of 83% and an FEV1 of 68% to 73% and 60% respectively. Now, here's why I say "bad" news. I of course never ever like it when my numbers go down, but this can actually be explained.

I just ended a cycle of TOBI. Want to guess what my PFT numbers were after my last cycle? If you guessed almost identical to what they are now, you'd be correct. When I blew my PFTs out of the water last month, I was on my off month of TOBI. So what does this mean? Well, one of two things: it's either pure coincidence or TOBI bothers my lungs while it's in there killing the bugs. I'm going to have to go with what's behind door number two Pat! I always feel a little "off" during my TOBI months. I'm usually achy, have hot flashes and generally feel more tired. It also probably didn't help my numbers that I was traveling so much this month and I hacked up some blood last week. So, that's the "bad" news.

Good news you ask? Like one of my Facebook friends said, this gives me the opportunity to "recalibrate and recalculate". I love that by the way Kelly! That's the first thing I thought when I blew those numbers (not in those exact words of course, those are yours). I was thinking, alright Ronnie, let's figure out what you did or didn't do this month that you did or didn't do the month before. Where do I start? Like I said, I was traveling a lot this month. Traveling means less consistent exercise, less consistent treatments and less consistent sleep. Well I'd say that's enough to send my lung function down 10% right there! Now it's up to me to make a new battle plan for this month and stick to it. No excuses!

I never take these "bumps in the road" lying down. If CF raises me some bad PFTs, I'll re-raise him with more exercise. If CF raises me with tiredness, I'll re-raise him all-in with increased treatments (Sorry for the poker analogies). Point is, I'm willing to do whatever I have to do to maintain and increase my lung function. I know that the investments I make now, will pay off in the future. For me this month, it may mean a hospital stay. If we're going to be honest, my doctor wanted me to get a bed in The Hole tonight. He's concerned with my drop in lung function + hemoptysis + other symptoms. Unfortunately, I can't go in tonight. I'm traveling to Dallas on Friday to be part of the CF Concert Series. If I get more sick by making that choice and pushing off a hospital stay, then it's on me. I'll have nobody to blame, including Mr. Cystic Fibrosis, but me. When it comes down to it, life is choices, and I am alone responsible for every one that I make...

...but yeah Dr. Martinez, I'll take that bed next week!

My Top Ten Favorite Ways to Kill Time in the Hospital

After reading Sydna's great guest post on Sunday, I decided to put together a hospital themed list. My list is all about how I find myself killing time while I'm in the hospital. Now, keep in mind, I've averaged about 90 days a year hospitalized over the last handful of years. Killing time is essential. Otherwise, there is no doubt that I would go stir crazy. Luckily, I've never really minded being in "The Hole" because I know it's what I need to stay on top of my game.

10. Taking Naps - I never, let me stress, NEVER take naps. If I am caught napping, that means that I'm either REALLY sick or I didn't sleep the night before. It's nice to take some little cat naps while in the hospital. Sometimes it's also necessary, cause as all of you CFers know, consistent sleeping patterns in The Hole are nearly impossible. Towards the end of my stay, I'm usually up until 3 in the morning.

9. Blogging - Not that I don't do a lot of blogging when I'm not in The Hole, but in the hospital I usually do video blogs. Those are fun cause I can get more of my thoughts out and I can make you stare at this dreadful mug for five minutes :) If you've been following this blog for awhile you also know that I like to film things like IV placements, discharging of a PICC line and PFTs.

8. Visiting My Old Peds Floor - I absolutely LOVE my old ped nurses. Seriously. Every. Single. One. (Did I do that right? I always think it looks so cool :) ) They are always smiling and make me feel like a million bucks every time I see them. One thing about going to the hospital as much as I have during the course of my life is it has created a big time family environment for me. I know most nurses and RTs personally and they know most of my family as well.

7. Organizing My iTunes - I never like doing this while I'm doing it, but man does it feel good when I'm done. I'm pretty sure that I am at least borderline OCD when it comes to, well, pretty much everything. All of my songs need to have the correct genres, correct album covers, all information filled out and there can be no repeats. I've literally spent hour upon hour organizing all of my stupid songs.

6. Walking the Grounds - It's fun to walk around the grounds of the hospital and try to spot things that have changed since the last time I was there. It's pretty easy to do because they are ALWAYS working on the campus. I go to a teaching hospital that is attached to a University. They are always expanding by adding new buildings or renovating old ones.

5. Hidden Object Games - Mandi and I usually spend hours playing hidden object games that we find online. In fact, we use a site called www.hidden-object-games.com. If you've never played them, you'll either really enjoy them or you'll throw your computer out of the window.

4. Listening to John Jay and Rich - This is probably Mandi's favorite part of me being in the hospital. Usually on Saturday and Sunday mornings we grab some Dunkin Donuts, curl up together on a chair and listen to podcasts from JJ&R. You can find them at www.johnjayandrich.com and I HIGHLY recommend listening to "War of the Roses" and "Second Date Update" podcasts. I guarantee you'll be laughing.

3. "Terrorizing" Student Nurses - Maybe I chose to harsh of a word, but I couldn't think of what else to call it. Whether it's making up symptoms or tapping on my chest to create an irregular heart beat, I'm always messing with them. Here's my favorite thing to do though: There are these antennas in each room that will send out data to the nurses station if you're hooked up to a certain heart monitor. These antennas have four arms and look like a mini ceiling fan. Often, on their way out of the room, I'll ask them to turn my "fan"on. I'm not kidding 10 out of 10 times, they'll keep flipping the light switch off and on wondering why the fan won't start to spin. I've even had some say they'll call maintenance to get it fixed. Love it!

2. TV series on DVD - My cousins (I have about 100 of them) will often bring me TV series they like on DVD. While in The Hole, I've managed to watch every season of the Office, LOST, 24, Freeks and Geeks and King of Queens. I'd much prefer that than watching live TV because after getting DVR I am now a commercial snob and refuse to watch them anymore. If you have any "must see TV" for me, let me know and maybe I can add it to my list for the next stay.

1. Playing Video/Board Games - I'm a competitor. I don't care what it is. If I'm doing it, I want to win. If it's not a competition, most likely I'll turn it into one. This goes for board games too...especially if it's my little brothers or Mandi. We like to play Sequence, Skip-bo, Scrabble, Boggle etc. The only time I play video games is when I'm in the hospital but it definitely takes me back to my younger years when my buddies would come by and we'd play until the sun came up. Again, if you have any suggestions on new games, I'd love to hear them.

Well, that just about does it. What about you guys? What do you do to kill the time while you're in The Hole? Feel more than welcome to leave some comments today and give me and others some more ideas. You can also contact me if you'd like to form your own Top Ten list and post it on this blog.

Everyone Can Use a Cheerleader

As some of you may remember from my previous posts, I am training for a half marathon that is at the end of this month. I ran yesterday, as Sundays are my days to get a long run in, but I really really really didn't feel like running. I could think of a million and one reasons why I didn't want to go and a few why I shouldn't go! It was hot, I had to do it alone, I was tired, I could just do it tomorrow, I hadn't been drinking enough water so I'd be dehydrated, and many, MANY more. Never-the-less, I laced up my Asics and hit the pavement. It was not a very enjoyable run from the start. Just one of those days when everything feels off, and as my mouth dried out and my legs went numb, I constantly had to keep my mind from flashing back to all my reasons as to why I shouldn't be running. I had to keep the little voice in my head from saying, "told you so." With a mile and a half left in the run, I saw Ronnie on a bike riding towards me, yelling, "Good job honey." Boom, I instantly felt less tired, had more energy and suddenly the last 1.5 miles didn't seems so far (although my mouth was still just as dry). Ronnie rode the last leg of the run with me; cheering the whole way.

It reminded me how far a little encouragement goes in motivating me. Somehow, a few cheers from the sidelines really does a lot for me. When we got home, I told Ronnie how awesome it felt to have him cheer me on when I felt so tired. We both agreed that it's a good thing to remember to do more often. Not only when we're running, but with anything. This really goes for all things related to CF: treatments, exercise, hospital stays, taking meds, PFTs, and the list goes on. Stuff that is not so fun, and often times tiring, becomes a lot easier with a little help from people on the sidelines.

This week, I've made it my goal to be super uplifting to the people around me. Join me and do the same!! Hopefully, someone in your life will return the favor!!

Favorite Things About the Hospital

Today, I'm proud to present to you a blog from a cyster that I have recently met over in the Facebook world. Which reminds me, if you have Facebook and you read this blog, find me and friend me. If you already are a friend, then make sure to suggest to me other CFers and CF parents that I can meet! Ok, back to this great blog that will be featured today. It's by my cyster Sydna and her blog can be found over at http://tatteredbookworm.blogspot.com. I really like the positive spin she put on hospital stays. I myself may have to write up a "Top Ten Things about Hospital Stays" but for now, I give you Sydna's top ten. Enjoy!

With an impending hopsitalization on the horizon, I thought I would compile a list of my favorite things (a.k.a. the silver lining) about the hospital (affectionately referred to as Spa Seton). Mind you ladies and gents, these are in no particular order...

1. Rather than having to get up each morning, put on makeup, curl my hair and find something cute to wear, I can simply put on my pajamas each morning, or rather, keep them on! What's not to love about an excuse to wear pajamas all day? And, it's expected. I can even get coffee in the gift shop or go across the street to Caffe Teo for a spiced apple cider and they see my PICC line and bam, pajamas are instantly perfectly acceptable attire. 14 days of pajama bliss without makeup and hair!!

2. No dishes!! I loathe dishes. They are the bain of my existence and the number one reason why I don't cook all the time. I hate doing them. I hate drying them. I hate putting them away. Dishes slightly stain the ritual of cooking. For 14 days I have no dishes but I get home-cooked meals! Sign me up :)

3. Nebulizer treatments. Now hold on before you get too excited - not so much the actual treatment as it's not my job to remember them! The RT (respiratory therapist) is supposed to remember my treatments. :) She comes in, sets it all up, hands me the cup and I breathe. Hmm, I could get used to this. Afterwards, she rinses it out and we repeat every four hours.

4. Coffee and other breaks! My doctor gives me a pass to leave for up to four hours each day. It doesn't always work out, but the nurses are super nice and they don't count the trip across the street for coffee as a "pass" so I can indulge in lattes and pastries from La Madeleine (a stone's throw from the South entrance), Caffe Teo and the cute gift shop in the North lobby. And since we all know I'm a glutton for coffee, this works out well.

5. Battle scars! Growing up, I was always the caution kid. The kid who never broke any bones and rarely came home with cuts and scrapes (minus the incident where I thought I could magically skateboard down a steep drive even though it was my first time and instead managed to reacquaint my stomach with both gravity and the gravel street). When I leave the hospital I come home with a PICC scar. You're thinking I'm mental but finally, I get to be like the other kids and show off my battle wounds!! I now have four of these white scars in my arm and they all have a story to tell.

6. The craft-o-matic bed! Remember those commercials for old people where the bed bends in all these funky shapes to make it more comfortable? Guess what ladies and gents - the beds at Spa Seton do the same thing. And you too can enjoy them, but only if you are lucky enough to stay there. They bend up, they bend down and they rise up. Adam and I like to climb in to the tiny bed, put up the guard rails (careful, it gets rowdy in our bed!), raise it all the way to the top and watch TV. The bed goes nearly to the top of the room. It's quite entertaining on a rainy day :)

7. Friends! We're all busy and we all have lots of commitments and obligations. But, I get to see more of my friends when I'm in the hospital because they love coming to visit me in the spa. :) In two weeks' time I see more of my wonderful friends than I see in a six-month period I bet. It's a great way to catch up!!

8. Nap time. I adore nap time. I took it for granted in kindergarten and all during camp, but now, I love it! I just don't get naps anymore. Ironic how that works out :(. Needless to say, I have ample time to nap at Spa Seton. There is nothing better than curling up with my pillows and Lefty (my squishy elephant, aptly named Lefty so as not to be confused with the Republican elephant) in the late afternoon when the sun peaks through the curtains.

9. Food network! I can watch food network all day long and not feel even the slightest bit guilty! Then I get out my laptop and save all those delicious recipes to my recipe box :) I could watch this channel almost all day and never get bored. It's fun waking up, catching the news, actually seeing the sunrise (usually I'm at work before the sunrise and my office is sans window so I usually have no clue what the outside world looks like until I leave at 4p) and then watching the food channel, reading, playing games and not feeling like there is something I should be doing (e.g. dishes, cleaning, etc.) As I said, I don't have to make dinner, do the dishes, clean up my apartment, etc. It's like a vacation from life and it's mundane chores.

10. Beef tips. I know, this seems out of place. Let me explain. My mom is a fabulous cook and she never cooked things like beef tips in brown gravy on rice. This is Luby's food!! Damn, it's good. Sunday evening is beef tip night. I could eat this every night. Good thing the CFers are on double portions so I can have twice as much. Sorry A, no dinner for you on Sunday nights - I'm eating my 2nd portion!!!

So what do you guys think? Do you have your own list? You can either leave some of your favorites here in the comments section or contact me if you'd like to write a guest post :)

Should CF Women Have Babies?

I received this email over on Facebook from a women who is reaching out for help. I wanted to share it with you guys and hope to get her some feedback. Please leave your comments for her here or you can always e-mail her directly.

ronnie i am 21 i have cf and all my life i was told im dying give up all the negative stuff on top of that my mom was in lighter words insane honestly unfit to raise me and know im happy to report i went from living with her being 80 lbs and 40% lung function to being with my now husband and i went to 122lbs and 72% function im very happy but heres the problem my doctor isnt happy she actullay is mad im not better and my husband and i want to have children and she sat there in front of me in clinic and told me i was dying and i shouldnt bring a child in to this world with a dying mother and told me if i did get prego i should terminate if it had cf but thats like my mother terminating me and you you know what should i do i know i need my doctors on my side to go through a pregnacy it says so on all the websites and that it is possible and it could be healthy and all that should i try and find another cf doctor report her for paiteint doctor abuse if so how i live in houston texas there are no other cf adult care doctors but her in my area i know your a guy but i really need help i have just learned in the last year all about my illness for my self lost my medicaide lost ssi everything cause of my mom and she never told me anything about my illness so im really just now learning about it and i have no clue about anything out there to help my husband and i with any problems we have such as prescripton cost doctor rights anything i really need help from my cf community please feel free to contact me on here or by email shelby87a@hotmail.com and if you need other people opion feel free to post this i need all the help i can get from anyone who can give it thank you

I'm sure that she would love to hear from some of you cysters out there who have babies of your own. It sounds like she is very interested in carrying a child, but seems a little uncertain about bringing a child into this world without being able to guarantee it a "normal" upbringing. What would you guys say to her? I'm sure any feedback would be much appreciated.

The First Time I Did 7% (HTS)

Some of you may be thinking, "wait, 7% of what?". So let me explain...7% saline solution is a pretty new treatment in the CF circles. It's exactly what it sounds like, it's salt water in it's most basic form. They first became curious about this "drug" when they discovered that CF surfers in Australia had much higher lung function then there non-surfing CF counterparts. After years of clinic trials and research, 7% saline solution was born. Some of us refer to it as HTS (Hypertonic Saline) or HyperSal. If you're curious, I currently do two HTS treatments a day, but this post is about my first experience with huffing "salt water".

The first time I ever inhaled 7% was while I was in the hospital more than a couple of years ago. I remember the docs asking me if I had tried it yet and if I wanted to give it a whirl. They also said that it can be quite an experience the first time and recommended that I try 3% which is 7%'s weaker cousin. Being the big old bad man that I am, I of course refused and asked for the big gun. They told me to expect to cough a lot while getting used to it, which I responded to in I'm sure a very smart arse kind of way with, "That's the point isn't it???".

My next treatment came a couple of hours later. After sucking in the albuterol and atrovent it was time for the 7%. Oh. My. Goodness. I seriously thought I was inhaling sand paper. I couldn't take a deep breath without the back of my throat feeling like it was being attacked by the tickle monster. I coughed liked you wouldn't believe. I'm not sure how much of the HTS I actually inhaled because I spent most of the time coughing. I couldn't believe that there was another single CFer in the whole wide world that could stand to do that stuff. I couldn't be defeated though and I tried my hardest to suck that thick salt air deep down into my airbags. I'm not going to compare it to torture, but it surely wasn't Magic Mountain at Disneyland. Needless to say, my first experience with HTS wasn't exactly a pleasant experience.

Fast forward to today...like I said up above, I now do 7% twice a day and tolerate it just fine. It's just something that my lungs (and throat) had to adjust to. I actually didn't start doing it at home until earlier this year and sadly, I must admit, it was because of laziness. Prior to the pre-made capsules that they have now, they were distributing bottles of 7% that I had to access with a syringe and then shoot into my neb cup. After hearing so many fellow CFers swear by HTS and it's ability to improve lung function, I decided to bite the bullet and start doing HTS at home. As luck would have it, they just recently started using HyperSal at my pharmacy which comes in pre-made vials just like Pulmozyme or albuterol. So now I have absolutely NO EXCUSES.

Oh yeah, one more thing on my first experience with 7%. Remember how I told them to just give me the big dog because I was such a big old bad man? Well, after that first 7% treatment I requested that they bring the 3% instead. I just couldn't stand all of the coughing. But wait, that's the point isn't it?????

**Special note for all of you that receive my email updates from FeedBlitz. That service will be ending today. My trial period is up and I refuse to pay for the service. I hope that you continue to follow this blog and if you have any suggestions on other FREE email services, I would gladly take them. You can also look into following this blog through a blog reader (Google Reader, Bloglines), the RSS feed or any other way you know of :) Thank you for your continued support**

Family, Great Weather and Golf

Every Thursday I like to write a post about things I am thankful for. This post will be mostly pictures as, what do they say? Oh yeah, pictures are worth at least a couple of hundred words :) I had a blast with my family out in San Antonio. My dad recently moved (back) there to work for the VA as a hospital administrator. He and my step-mom Denise recently (as in one week ago) moved into a new house in a really pretty neighborhood. I actually didn't spend too much time in it as we were on a golf course almost my whole time there (which was fine by me!). We did however have a family bbq with some cousins and my aunt and uncle who were in town. They were in town to go to the Notre Dame vs. Washington State football game (my uncle and cousins are HUGE fans of ND). All in all it was an absolutely great trip. Now I just hope to get my dad and Denise out to Arizona!

Little family portrait (Denise, Me, Dad)

Probably the coolest picture I took all week.

Golf course we played at the first day. It was settled in a canyon.

A super lonely golf cart.

This was the course we played at the second day.

We pushed a water stand over to lock my dad in the bathroom.

He asked nicely so we let him out!

My uncle Phil has "mad game".

This was the birdie put my dad choked on (sorry dad, had to do it).

A course with a view.

Pretty cool shot of my dad getting out of the bunker.

All of the rabid fans walking into the Alamo Dome to watch Notre Dame.

All of the band stuff was actually pretty cool.

So can you tell that I'm my father's son?