Sunday, January 24, 2010
Taking Strides
I can't sleep because I've been coughing all night. My lungs are having a spasm. I've decided to write in my blog and do some breathing machines to try to ease the situation. To all my Cysters and Fibros (CF friends) "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."
Cystic Fibrosis is a rare disease. Only affecting 30,000 people in the United States. I'm the only person in my family that has Cystic Fibrosis. I was diagnosed at birth due to an obstruction in my lower intestines which is common in CF babies. It's a fatal genetic disease caused by two recessive genes. I guess you can say I was the lucky crayon in the box.
It's sad to know that a lot of drug companies won't research or put money towards CF because it affects a small population. Us CFer's rely on the Cystic Fibrosis Foundation and fund raising by friends and family to help fund medications, research, and to help find a cure. CF for me is a full time job. People have asked me if the disease can go away, but it can't go into remission. I never get a break, it never goes away. The only way to finally be free of the disease is to find a cure. I haven't lost hope.
The scientists are so close to a cure. They know where the CF gene is located in the body they just have to find a way to fix and correct it. Lack of funds creates a problem. That is why for the past three years my team and I have walked at the Great Strides Walk for Cystic Fibrosis. Funds help science and science help to save lives. Great Strides is the Cystic Fibrosis Foundation National fund raising event. My goal this year is to raise $3,000 dollars in the mission to make CF stand for Cure Found. I'm crossing my fingers that I reach my goal this year.
Monday, January 18, 2010
Play On
Everything happened so fast and it's been a while since I posted. First off, I want to say yay I'm free and no longer on I.V. antibiotics! I had the PICC-line officially pulled out this past Friday...woohoo!
Let's rewind...I had an appointment with my pulmonologist to see if I should continue with I.V.'s or pull the PICC-line out, back on the 5th of January. I had been on antibiotics intravenously for 2 weeks. After 2 weeks, I had energy and less congestion. The appointment went great and my doctor said that my infection was gone and it was time to take the PICC-line out. But, I usually do three weeks of I.V.'s and I was nervous that two weeks wouldn't be enough and I might have a relapse which I didn't want. My boyfriend asked my doctor if another week of I.V. antibiotics would benefit me and my doctor said yes, it would. I guess I wanted to see if I could get even more of a result by doing another week, and he agreed that would be best. My x-ray still isn't so pretty(CF lungs)...but the white areas in the x-ray are a little lighter, which is a good sign. On my x-ray pictures, there are constantly white areas in my lungs due to mucus in my airways and lung damage caused by infections. He didn't do PFT's because his office was really backed up. We just did an x-ray and he gave me a conclusion from there...a total of 3 weeks of I.V. antibiotics.
Another big event that had occurred was a good 5 months ago I had booked a cruise to go to the Keys and Cozumel for my friend's Bachelorette party. Two days before the cruise, I had my doctors appointment. I was certain that he was going to say no way, but I hoped that the infection would be gone and he would approve my going on the trip. He basically asked if I was planning on going on the cruise, and I replied no. After sitting down and talking with him about it, he actually wanted me to go. Being that we agreed to do another week of I.V. antibiotics, he suggested that I pack my I.V. balls and go on the cruise. So with a script in hand, I packed and went on the cruise. I wasn't sure if it was something that I wanted to do with all my usual meds, I.V. meds, and baggage...but after telling myself over and over, "you can do this, you can do this", I ended up going on a four-day cruise. My friends were understanding and oftentimes I had to excuse myself to focus on me. When I needed to take time for my health, I did so. To my friends, I'm sure it was weird that I could be on I.V.'s and still be walking, dancing, and doing fun activities. But my best explanation is: when "normal people" take oral antibiotics, like Cipro, even after 7 days when they are feeling better and back to their usual selves, they still have to finish the full pill-cycle of 14 days of antibiotics. My last days on I.V.'s are always the best because I'm rid of my infection. Unfortunately, oral antibiotics don't work for me because I have been on them my whole life and my body is used to them...I.V. antibiotics are the next step to fighting off bacteria and infections. I always find myself making analogies...even I am sometimes bewildered by the fact that one day I can be fine, and the next day I have a full blown infection. But it's just how the disease is and sometimes I have to deal with the cards I'm dealt and play on.
I had so much fun on the cruise with the bride-to-be and my friends! I laughed as hard during those four days as I ever have in my life. And those are memories that I will cherish forever. I'm so glad that I went. There are times in my life that, due to my illness, I have to press the pause button...but when I get the green light to go, you betcha' I keep moving forward. :)
Let's rewind...I had an appointment with my pulmonologist to see if I should continue with I.V.'s or pull the PICC-line out, back on the 5th of January. I had been on antibiotics intravenously for 2 weeks. After 2 weeks, I had energy and less congestion. The appointment went great and my doctor said that my infection was gone and it was time to take the PICC-line out. But, I usually do three weeks of I.V.'s and I was nervous that two weeks wouldn't be enough and I might have a relapse which I didn't want. My boyfriend asked my doctor if another week of I.V. antibiotics would benefit me and my doctor said yes, it would. I guess I wanted to see if I could get even more of a result by doing another week, and he agreed that would be best. My x-ray still isn't so pretty(CF lungs)...but the white areas in the x-ray are a little lighter, which is a good sign. On my x-ray pictures, there are constantly white areas in my lungs due to mucus in my airways and lung damage caused by infections. He didn't do PFT's because his office was really backed up. We just did an x-ray and he gave me a conclusion from there...a total of 3 weeks of I.V. antibiotics.
Another big event that had occurred was a good 5 months ago I had booked a cruise to go to the Keys and Cozumel for my friend's Bachelorette party. Two days before the cruise, I had my doctors appointment. I was certain that he was going to say no way, but I hoped that the infection would be gone and he would approve my going on the trip. He basically asked if I was planning on going on the cruise, and I replied no. After sitting down and talking with him about it, he actually wanted me to go. Being that we agreed to do another week of I.V. antibiotics, he suggested that I pack my I.V. balls and go on the cruise. So with a script in hand, I packed and went on the cruise. I wasn't sure if it was something that I wanted to do with all my usual meds, I.V. meds, and baggage...but after telling myself over and over, "you can do this, you can do this", I ended up going on a four-day cruise. My friends were understanding and oftentimes I had to excuse myself to focus on me. When I needed to take time for my health, I did so. To my friends, I'm sure it was weird that I could be on I.V.'s and still be walking, dancing, and doing fun activities. But my best explanation is: when "normal people" take oral antibiotics, like Cipro, even after 7 days when they are feeling better and back to their usual selves, they still have to finish the full pill-cycle of 14 days of antibiotics. My last days on I.V.'s are always the best because I'm rid of my infection. Unfortunately, oral antibiotics don't work for me because I have been on them my whole life and my body is used to them...I.V. antibiotics are the next step to fighting off bacteria and infections. I always find myself making analogies...even I am sometimes bewildered by the fact that one day I can be fine, and the next day I have a full blown infection. But it's just how the disease is and sometimes I have to deal with the cards I'm dealt and play on.
I had so much fun on the cruise with the bride-to-be and my friends! I laughed as hard during those four days as I ever have in my life. And those are memories that I will cherish forever. I'm so glad that I went. There are times in my life that, due to my illness, I have to press the pause button...but when I get the green light to go, you betcha' I keep moving forward. :)
Friday, January 1, 2010
Cheers to 2010
Last night was a pretty low key New Year's Eve. Being that I have the PICC line still in, I didn't want to get too crazy in the revelry. My health is my first priority at this moment. I'm hoping for some smooth sailing and less waves in 2010. Once I get the PICC line pulled and I'm free, I will definitely pop a bottle of bubbly! My mom was my celebration buddy for the night. We decided to step outside to get a glimpse of the night sky and I got to see the Blue Moon. The last one seen was in 1990 so it was a remarkable sight!
My first day of 2010 already started out perfect! Fun events that occurred today:
1. I opened a present that came in the mail from my fellow cyster, Stina. I've been listening to my present, the new Michael Buble CD, all day. Ahhh I love it! (If you read this, thank you!)
2. I also ate some Chinese food and my first fortune cookie for 2010 read, "The time has come to allow your heart to guide you." (ooo ahhhhh...I love fortune cookies...so insightful!)
I think these are good signs to guarantee a good year. :)
As I was relaxing today with Buble in the background I started to think about my New Year Resolution: This year I plan on getting back into the gym and working my lungs out! Exercise is the best form of airway clearance for someone with C.F. I need to start taking more control over my health and not letting the disease control me. My goal is to run a marathon this year and I'm determined to do it. I've heard the first step is to write it down and my next step will be putting my words into action. Catherine Pulsifer says it best--"We need to determine what activities best utilize our time in order to achieve the results we desire in all areas of our life!" I can't wait to see what 2010 has in store for me!
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