Saturday, December 5, 2009

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???

Friday, December 4, 2009

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?

Thursday, December 3, 2009

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?

Wednesday, December 2, 2009

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!!!

Tuesday, December 1, 2009

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???

Monday, November 30, 2009

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 :)

Sunday, November 29, 2009

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.