A Day In The Life of Meeeee!! ( and stupid cf)

I tend to feel alot like this....

Im getting increasingly annoyed with CF, and i dont think people understand just how difficult it is especially right now when im on iv antibiotics and how much time and energy it takes to keep myself feeling as well as i do, which isnt even that good most of the time, so i thought id take you all through a day in the life of Rachel!! :) I have to also watch how much i eat every day to make sure i get all the nutrition i can as im trying to gain weight and have been my whole life. I need at least 600 calories and 33 grams of protein at meals to make my daily goal of 3,000-3,500 calories and 150-200 grams of protein. My snacks need to be around 400 calories and again around 33 grams of protein. Although i dont always make my food goals and admittedly some treatments go missed as im so exhausted i tend to fall asleep a few times throughout the day my doctor, nutritionist, and I made a generic plan of how a typical day should go which is what ive included. So heres my day!!

6 A.M. ~ wake up to do Piperacillin which runs for 30 mins through my picc line

10 A.M. - Wake up again!! Time for more meds

• 1 pulmozyme nebulizer treatment (10 mins)
• advair inhaler
• 1 adek vitamin
• 1 vitamin d
• 1 zithromax
• 1 albuterol nebulizer treatment (15 mins)
• use my VEST machine for 15 mins
• 3 creon enzymes
• eat a breakfast of at least 600 calories and 33 grams of protein

12 P.M. - it usually takes me till now to be dressed and ready for whatever i have to do that day, i move pretty slow so i dont cough so much and it can be fairly difficult to do things with a picc line in my arm, but before i do anything else i have to eat again, and do more meds.

• 2 creon enzymes
• cayston nebulizer treatment (5 mins)
• eat a snack of at least 400 calories/33 g. protein

2 P.M. - my second dose of piperacillin. (30 mins)

3 P.M. - by now im relying healvily on coffee or energy drinks to do anything and i feel like i could drop over and sleep for hours, the lectures about how bad they are for me are annoying..please stop. :)

• IV dose of tobramyacin (1 hour)
• albuterol nebulizer treatment (15 mins)
• 3 creon enzymes
• lunch of 600 cal/33 g protein

5 P.M.

• cayston nebulizer treatment (5 mins)
• 2 creon enzymes
• snack of 400 cal/33 g. protein

8 P.M. - i may move this down to 7 if i have plans :)

• advair inhaler
• 1 vitamin d
• 1 adek vitamin
• 1 albuterol treatment (15 mins)
• 3 creon
• meal of 600 cal/33 g. protein
• 15 mins on VEST machine

10 P.M. - ^same as the last one, it might get moved to 9.

• piperacillin (30 mins)
• cayston nebulizer treatment (5 mins)
• 2 creon
• high protein health shake

11 P.M.-6 A.M. i use 2 liters of oxygen overnight and will hopefully be getting a salt machine as well which ill use all night!! I heard amazing things about them!

So thats about what i have to do every day, some days i add on cipro and prednisone every 8 hours but luckily im off of those antibiotics for right now and in the summer i drink a gatorade with a teaspoon of salt in it every 5 hours as im extremely salt deficient, but this is a lot. It can take up my entire day and eating that much food can make me feel so sick i dont even wanna move, i work really hard at taking care of myself all week because my life literally depends on it. Saturday nights are soooooooo needed to blow off steam after that! haha, so when i sleep in the times i have no meds or i dont have to make a snack or a meal im not lazy, & I dont not have a job or go to school because im lazy or i dont care, i wish i could. this is exhausting and really takes my days away from me. Im quite proud of everything that i am able to do, but i need to buckle down and follow my meds a bit stricter as i can feel myself getting sicker. Maybe one day people will get that and wont judge us CFers so hard for the ""lack of effort we put into things" as ive heard it called many many times.