This is something I wrote to share with people at a great strides walk a couple years ago and thought I would share it on here. I was unable to make it to the walk because I was in the hospital but a friend relayed the message for me.
My name is Jamie I am a wife, a mom, and a daily fighter of Cystic Fibrosis, (CF). My parents got the diagnosis of CF when I was 2 weeks old, they were told I probably wouldn't live to be a teenager. I will be celebrating my 26th birthday next month This is in part to major funding and research from events like this and Cystic Fibrosis Foundation, that's why this event and the Cystic Fibrosis Foundation is so important to me. The funding from this event and others like this are what has enabled me to beat this disease as long as I have.
Growing up with CF was not easy as a child. I always had medicine and therapy's to take and do, this always made it hard to make friends, keep friends, and have regular playtime with friends. This was also hard because I was living for everyday and didn't think I would graduate high school, told I would be lucky to make it to 16. As new research came and new treatments were available that median age was raised to 20, when you get to high school it's all about planning to make your future. By the time I made it to high school the idea of making plans for my future was hard, I didn't want to waste the years I had in school. So I didn't I chose to date, work, and eventually marry and have my son. Also being told you only have so many years to live can do a number on your physiological health. But it can also be a gift, I was given the opportunity to live life to the fullest and experience things in life in the time that I thought I had. And yet with more drugs and therapy's came more years to live. When I got married when I was 21 the median age was 32, two years later it changed to what it is now which is 37.
With these added years comes added life, but also added challenges. All the new medications and treatments mean more time and energy into my health, which is time and energy taken away from the things I love such as family, hobby's, and even the ability to have a job or career. To give you an idea of what these treatments and medications entail I'd like to give you a run down of the things I do during the day. I take no fewer then 11 separate medications a day to manage my CF. I wish this meant that I only had to take 11 pills a day, but thats not the case I take approximately 50 medication each day. These medications include several different pills as well as inhalers. My treatments also include several different lung clearance exercises. These are designed to loosen up mucus so that I can cough it out easily. One of those is a chest vest that I put on twice a day, it shacks me to loosen the mucus, each session takes about 30-40 minutes. The other lung clearance that I do is cardio and weight training about a hour a day. I also have do nasal washes twice a day to clear mucus from my nasal passages. These treatments and air way clearance exercises take up a great deal of my day. I do all this daily in the hopes that it will keep me infection free for months,and if I'm lucky up to a year and sometimes longer. As much as I keep up with these treatments daily it does not guarantee that I won't get an infection and be put in the hospital for what is called a clean out in the CF world. I have been hospitalized more then several times in my almost 26 years, my friend is relaying my message today because I am currently in the hospital, my third time in the past 12 months. These hospital stays require me to stay in patient for 1-2 weeks, and under go vigorous lung clearance and IV antibiotics. All of these things are what I do to maintain my health, I also have daily duties as a mother and wife that can sometimes add stress to my routine. The older I get the harder it is.
I'm telling you all of this because this is the reality of this disease that I fight on a monthly, weekly,and daily basis. I would give anything a side from family if it meant I didn't have to fight this anymore. That's why I need your help to raise not only money but awareness. The Cystic Fibrosis Foundation uses the phrase "adding tomorrows everyday" as their tag line. I am deeply appreciative of all the work that they do and for the ways that fund- raising efforts are enabling researchers to make "Great Strides" toward finding a cure for CF. The foundation has lived up to their motto and has done much to add many tomorrows for those of us with CF. But they can't do it alone they need everybody they can find to get involved, and to get their friends and family involved. We need all the people we can get to beat this disease. As I stated before I will celebrate my 26th birthday next month. The odds that I will get to celebrate my 37th birthday are 1 in 2. I thank all of you for getting involved to raise money for CF, it is greatly appreciated. I don't want to die waiting for a cure when so many others have already lost their life waiting.
No comments:
Post a Comment