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

Friends and Family

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. Continue reading

Happy 37th birthday to me!!!

Today is a happy day because we get to celebrate me, of course!  Yes, I LOVE getting older because it means I kicked CFs butt for another year.  On the flip side it is hard day without my mom here.  I thought after last year this year would be easier.  Considering I was in the hospital last year and it was the first one without mom here.  I have been doing nothing but crying most of the day thinking about mom.  She would call me at 3:05pm, the time I was born, on my birthday every year.  There were some years that she couldn’t wait that long and would call in the morning and then call back at 3:05pm.  I miss that phone call of her singing happy birthday to me.  We were VERY close.  I had plans to surprise her on her birthday last year in April but obviously that didn’t happen. Continue reading

21 days down…

IV antibiotic update:  Last Thursday (the 1st) I had my regular labs drawn.  I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2.  That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys.  We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9!  It is better to stop it before it gets to bad.  I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range.  I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. Continue reading