Saturday, November 21, 2009

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!!!

Friday, November 20, 2009

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???

Thursday, November 19, 2009

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...

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.

Wednesday, November 18, 2009

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' will be mine.

Tuesday, November 17, 2009

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!!!!

Monday, November 16, 2009

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” 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 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 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 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.

Sunday, November 15, 2009

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.