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Tuesday, July 19, 2011

Simple Things

Hello World!

I'm super annoyed and frustrated.... with myself. I hate that I can't do simple things anymore. Walking from the couch to the fridge requires a coughing meltdown once I reach the fridge. There better be someone around if I want to get anything out of a jar. It would be nice to go up a flight of stairs and not feel like I just ran a marathon. Showers now take me close to 45 mins.... and thats not including the getting dried off and dressed after. I would love to be able to go to the store and shop in the adult section, I mean I am 25 not 12. Anything over 5lbs is too heavy for me. For one day I would just like to have a normal poop! Eating use to be fun, I would love to go out for a meal, now I eat because I have to.

I had my CF Clinic yesterday. My lungs are the same as they were a month ago, which is great! But I'm losing too much weight. It doesn't seem to matter what I eat it doesn't stick to my bones! The new plan is to increase Tube Feeds. I thought it was going to be 24 hours a day but it is actually 18, so I get 6 hours of freedom! Yayy!!

I miss my simple life. And believe it or not I once did have a simple CF life.

Breathe Easy


  1. I'm rooting for you - hoping you can gain that weight! Don't you have the little G-tube button to make it smaller and get rid of some of that excess tubing?


  2. My GJ tube was exactly like that. I only have a J now, I hope you can put on good weight, in your muscles. I know how you feel about being able to lift things. I still have that problem, I need to use my free weights again.

  3. @Gabe Thanks! I do have a button. I put dressings around it at night because I have a fear of pulling the buttob out while I sleep.

    @Jess Thanks for the kind words. I should get some free weights.