• I now understand why my mom slept all the time near the end of her life.  No I’m not saying I’m at the end, don’t worry.  She would have a good day and be able to hang and do a bunch of things then the next day she would sleep pretty much all day.  She may have even needed 2 days of recovery depending on what she had going on.  I’m sure I have written about this before but the reason I am writing about it now is because we had a double date last night for dinner and the Dan + Shay concert.  Before that I was able to go to a very good friends promotion ceremony which was about 2 hours long with the ceremony and the party after.  My busy day started at about 12pm with getting ready and we got home around 11pm.  I was so very tired when we got home that I wanted to just go to bed but that’s not possible, I have to do a breathing treatment first. (more…)

  • What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind.  Friends and family have been on my heart and mind for a while.  The sicker that I get the more I think about them and what they may be feeling.  Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge  my CF or even remember.  It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. (more…)