What is “normal?” Normal is a relative term. My normal is not someone else’s normal. My normal is what I know. Now with that said you might ask where I’m going with this. Well let me fill you in…haha.
My normal consists of coughing, lung cookies (sputum), breathing treatments, vest treatments, lots of pills, chest port, IV antibiotics, club med stays (hospital stays), shortness of breathe, wheezing, being worn out among other things. I am not able to just get up and go and that is probably one of the most frustrating things. The first thing I do in the morning is a treatment. I am almost worthless until I do a treatment. I know some CFers are able to just carry on and cough but that annoys me (for myself). I am unable mentally to just continue to cough if I know that a treatment will help. I get frustrated with myself when I am coughing a lot. I don’t realize how much I am coughing until I hear myself on video/recording or until someone comments on my cough. Usually it is my husband who comments and asks how I’m feeling. He usually knows when I’m getting sick before I realize it by my increased cough.
“Playing the Cards Life has Dealt”
The guy who I was dating throughout junior high and high school proposed to me the summer before my senior year and we set a date for the wedding after I graduated from high school. January of my senior year I had the opportunity to go to Hawaii through the Dream Factory. The Dream Factory is a wonderful organization that gives kids who are sick with incurable diseases their wish like the “Make a Wish Foundation” does. My wish was to go back to Hawaii. I have family that lives in Hawaii and it is my favorite place in the world. I haven’t been anywhere outside of the US but still it is my favorite place to go/be. The only weird thing was my fiancé went with me, not so much of a kid thing to do. In July of 1998 we got married in a big catholic ceremony. We moved to Pittsburg, KS two days after getting married. My husband was going to start college at Pittsburg State University and wanted to walk on the football team.
While I was living in Pittsburg I hung out with my aunt a lot since she lived there. She invited me to a women’s bible study. I was very interested because I had a lot of questions that I wanted answered. One of my questions was, did God give me this disease and why? I began to find comfort in knowing that God did not “give” me CF as some kind of punishment and that I won’t know why I have CF until I have a chance to ask him when I get to heaven. I am sure that I will see all the people that I affected and encouraged because of CF so I decided to stop wasting my time worrying about that. I know there is a reason I have CF I just cannot see the magnitude of why yet. I have a major compassion for sick people, people who are in the hospital a lot, people who have no energy due to illness, and even the caretakers of the sick people.