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

Progression…may as well be a curse word

(Kind of a ramble…sorry)  It is day 11 of IV antibiotics.  I felt horrible over Thanksgiving and the weekend.  My husband was sick last Monday and Tuesday as well.  We were no fun last week, that’s for sure.  We had Thanksgiving lunch in our PJs and watched Netflix and football.  My husband is back to his healthy self, thank goodness.  When my husband came up sick, we thought it best to cancel my sisters trip here for the holiday.  We didn’t need to subject my sister, nieces and nephew to all the germs in our house.  We sure missed having them here for the few days.  The worst part is hearing that my oldest niece was crying and upset because she couldn’t come see aunt Shannon.  That broke my heart.  Of course, I am now thinking of when we can get a visit arranged ASAP.  She said she wants to come here for her birthday.  I agreed that was a great idea!  Spring break in Tennessee!!  Whoo hoo!!! Continue reading

Losing or winning the battle

When someone with a disease passes away many people use the phrase “<name> lost their battle with <disease>.”  That statement can be taken as if the persons disease won and took them.  I know when people use that statement they don’t mean that the person was weak and let the disease win.  They mean that they died and the cause was that persons disease.  Some people take it as an insult.  I personally don’t because I understand people’s intention behind it.  Also everyone grieves differently.  As a person with a disease I know that I fight everyday to keep living.  I don’t necessarily feel that it is a “battle” but the life I was given even though it is much harder than some.  Some days are much harder than others and some days are much better than others.  Life with CF is all I know.  I was diagnosed at 5 months old so I don’t know any different. Continue reading

Clinic update

Today was clinic day.  If there is one thing CF clinic has taught me over the years, it’s patience.  I am used to it so it is no big deal but others would flip if they had to sit in the doctors office for 2.5 hours or more.

I haven’t been feeling the greatest as you know since I started oral cipro and prednisone.  I have been on both for 11 days.  I have 2 days of prednisone left and 3 days of cipro left.  Today’s clinic wasn’t the greatest.  First stop was lung functions which were down from last time.  This time my FEV1 was 1.37 / 46%.  Last time I believe they were 1.47.  They aren’t down a ton but they seem to be taking a slow decline.  Gotta love having a progressive disease that you have no control over. Continue reading