CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Guilt

    Guilt. I know I talked a little bit about it in the book but I wanted to revisit it. I may repeat myself, ok I know I will just go with it. haha

    As someone with CF you feel guilty for your life (sickness/disease) taking time away from others. I will speak for myself, I feel bad when someone has to stop what they are doing (everyday life) and do something for me that is due to CF or CF related. For instance when people come see me when I am in the hospital I feel bad for them squeezing that in their busy day. I never want to be a burden on people. I never want people to feel sorry for me. I never want people to stick around because they feel bad for me. I never want people’s lives to stop when mine has too. I want people to continue on with their normal everyday life. I have no choice in the matter, my life has to be put on hold from time to time. Others have the choice. Don’t get me wrong I am so thankful when people are able to do things to help me out when I am in the hospital like making sure my bonus son is taken to all his activities when my husband is unable. I appreciate everything everyone does for me and my family with all my heart, it is just hard to accept needing help. I am a very independent person and really dislike it when I am not able to do things for myself. I have had to learn to allow people to do things for me which is very hard for me.
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  • Normal…what is normal anyway?

    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.

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