I Remember When

I remember when I could do a lot of things that I am unable to do now.  Unfortunately, that is only going to get worse as time goes on and my lungs get worse.  It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t.  If that makes sense. Continue reading

Life update

I saw my surgeon for my follow-up from gallbladder surgery and everything is good.  All healed up!  Not having the pain from having a bad gallbladder is great!  I’ve known it needed to come out for a while now, I just needed it to finally act up.  I told the surgeon the only thing left to take out is my appendix and these crappy lungs…hahaha. Continue reading

Happy CF awareness to me

I have not been feeling good for about 3 or so week, maybe more.  I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant.  We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs.  I made the dreaded call after the 4 days of 40mg of prednisone and no improvement.  I need something more therefore I had to call with all the I have coming up.  I have a busy 5 weeks ahead.  Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself.  Then I have a girls trip to the Gulf Shores the next week.  Then in 5 weeks we have our good friends wedding weekend. 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

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