CF Control and Progression

A few days ago I read a blog who had read a challenge offered by Piper, over at A Matter of Life and Breath.  She wrote an amazing blog post  and extended a challenge to others to write about their thoughts on CF control and progression. So here goes...
As I have grown up always knowing full well that I had a disease called Cystic Fibrosis, I didnt understand exactly what that meant.  I knew it was something I could die from, I knew it was scary, and I knew that I was, as they say, "beating the odds".  I had ups and downs all through adolescence, I was always "sicker" than my older brother, but it wasnt until I was almost 16 that CF became a little more real to me.  It was then that I had to go into the hospital for the first time.  I was scared out of my mind.  I worried that this was the beginning of the end.  Oh how I was wrong, thank goodness!  About 30+ hospital stays later at 31 years old I realize that my young, immature 16 year old self had no idea what lie ahead of me in this journey of life with CF. 

I dont think I was ever in denial.  I always knew I had Cystic Fibrosis and that death comes from this disease.  I think that we can really only know what we have experienced or have witnessed other people experience.  At that age the only other CF person I knew was my older brother and as previously mentioned he was always healthier than me. Growing up treatments were hit and miss.  Compared to now there wasnt a whole lot to do.  Take enzymes with meals, inhale distilled water through a big tube, (my brother and I would pretend the mist was death and try to kill each other.  Awesome right?), and get our backs pounded on in hopes to loosen the yucky crud in our lungs.  It was probably middle school age that I really started taking a great intrerest in my own health and began to be pretty compliant.  I would miss treatments at night if I got home too late from a ball game or if I went and stayed at a friends house.  I remember when I was 14 years old, a freshman in high school, I had to wake up at 4:30 every morning so I could do my medicine get ready and go to cheerleading practice.  I was dedicated and determined. I went in the hospital about once a year, (after that first visit)on my terms, at least thats what I told myself.  I felt as though I was in charge of CF.  Oh how things change. 

My last year of College I had a few very scary incidences.  I began coughing up cup loads of blood.  I had to be hospitalized and they embolized my lung.  I was more scared than I have ever been.  Thankfully, we got it under control.  Soon after this experience I was married and began married life in a job that I loved but that was very stressful. I went in the hospital four times that year. My husband felt I should quit my job, but I was prideful. I was determined to show CF and everyone around me that I was in charge. It wasn't until I found out I was pregnant that I knew quitting my job was the only option if I had any chance of having a healthy baby. I was really worried about miscarriage due to the stress I was under.

After quitting my lung functions increased. My Drs were amazed especially because I was pregnant. At about 6 months that all started to change. If you have read any of my previous posts about my pregnancy you know what happened. Death has never felt closer. After surviving having my daughter I struggled in every aspect of CF, and life. I remember I had only been home a couple of weeks after spending a month in the hospital. I was so weak and frail that all I could do was feed my baby and do my medicine. That day in particular I had used all my strength to give Cambree a bath, she had maybe been out of the tub 30 min. when she vomited all over herself. I was devastated. Thankfully my mom came home at that time and told me to go shower and she would take care of the baby. I did just that. It was then that I was at my lowest point, physically, mentally, and spiritually. I remember thinking, "I don't know if I can do this anymore." I distinctly remember feeling that I had a choice. I could choose whether I lived or died. I also felt that in order to survive it was going to take a lot of hard work on my part. I chose to live! I don't think I have ever dedicated myself so much to something. I exercised 6 days a week and did 4 treatments a day. Even though I did this I went in the hospital 6 times that year. I continued to fight. It didn't seem that I had much control over anything. The only thing I did know was that if I stopped working I was giving up and death was imminent.

I don't know why I got to choose, I guess in reality by being compliant we are all choosing to fight. I have often struggled with why I was able to come back from where I was when so many aren't. I am so grateful that I was, but have often felt guilty for those of my friends that have not and have since passed on. It's hard watching others that we are close to struggle. It makes me appreciate that I am still able to do. It has been 7 years since that time. The progression of my CF has maintained pretty well. I only went in the hospital once this year. I do my medicine and take vitamins. Everybodys journey with CF is different. This is my journey/trial and I am trying to learn everything I can from it and do it with grace and patience.  I definitely lack in both areas often.  My brother who has the same mutaions as me has just recently had to start thinking about CF in a different way.  He has only been in the hospital a handful of times and is 33 years old.  That is his journey. Overall, my thoughts continue to change on the whole control of CF thing. I think that overall God is in control. I do think that we all have a purpose in this life and when we have fulfilled our mission/purpose it is our time to go. Along with that we have to take care of ourselves and do our part to be here and have the best quality of life we can.

These are my jumbled mess of thoughts.  If you wish to take the challenge, read below...
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved one's.