Life update

I had a CF clinic check up yesterday and all is good.  My lung functions are up 3% to 36% from 33%.  They said I sounded good and looked good.  My BMI is great at 24, yes I have some extra weight to help fight off infection.  When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection.  Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess.  If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading

CF Awareness Month begins

May is Cystic Fibrosis Awareness month.  This is the month many CF Foundations do their Great Strides fundraising walks.  I am very aware of CF every day obviously.  Now is the time to educate others.  If you have questions about CF or what I have to do every day feel free to comment on this post and I will answer them. Continue reading

A different outlook

“I will focus on what I CAN do and not what I cannot do.”  – Shannon

I had an epiphany sometime this week and the above statement came to mind.  My counselor asked me what brought it on and I said I have no idea!  The negative thoughts aren’t/weren’t getting me anywhere so I figured I needed to try something new.  So with that said, I’m trying to have a better outlook.  Enough from the pitty party host.  I need to change my way of thinking. Continue reading

Things I hate/miss

As I was walking the dogs around the block today with my oxygen on my back I got to thinking about all the things I miss being able to do.  With progression of CF, your independence slowly gets taken away.  It is a major mind battle and the depression takes a hit when you think about all the things that are “taken away” from you. Continue reading

Joy

Where has my joy gone? Where is the happy-go-lucky Shannon that we are all used to?  Losing my mom seems to have taken my joy away on top of my CF progressing.  I had a good cry fest over our trip to KC over Spring Break.  Maybe it was because I couldn’t see my mom while there as usual.  Maybe it’s because I’m just a wimp and got home sick within days of being in KC.  I like the comfort of home where all of my medical stuff is so I have the things I need.  Packing with all the medical stuff is a pain in rear.  The anxiety of “did I remember everything.”  I forgot one of my inhaled meds this trip, ugh.  We were gone 10 days.  I defiantly could tell a difference not having it but I made it through. Continue reading

Day(s) of Recovery

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. Continue reading