Struggles of having Cystic Fibrosis

Before I start I want to say if you want to know more about cf go to cff.org or google works well too.

Besides the struggle of actually having the disease, there are lots of other struggles.So especially right now I’m struggling more with cf. I’m on iv antibiotics four times a day til Friday and have to do four vest treatments in addition. To say the least it is definitely a time consuming disease.

Basically cf is when the cells don’t have enough salt which causes thick, sticky mucus that affects lots of organs and other stuff with your body. Fun I know right?! Sarcasm included, but not limited to.. who knows what, I think it’s just a saying or something along the lines of that.

Anyways some other struggles besides time management is telling your friends why your absent for weeks or months on end or having to just flat out explain what this complicated mess of a disease it is. Either way it’s a process.

Let’s think hmmm some more struggles….Oh Yes! So my hospital that I go to is about a 45 minute drive and keep in mind around an hour and a half two hours worth of driving time there and back. So that’s a thing. I don’t like car rides in the beginning because they are so boring, but having to go to a lot of different kinds of doctors appointments especially right now because I’m sick, the drive time is definitely not ignored.

Ohh and the fact that I get sick a lot. Whether a sinus infection, a normal cold, stomach bug, you name it I get it. A normal cold isn’t to bad, but I usually end up having to stay home for a week or so at a time because it can lead to breathing problems, or because of cf it takes longer for me to get better since my immune system isn’t the best.

Sleep. Don’t get me started with sleep. I am currently typing this is 3 o’clock in the morning because I cannot sleep. I try releasing, deep breathing, belly breathing, just pain out trying to go to sleep, but to no avail, nothing helps. My lungs like me so much they decided to be like hey you? Ya are you going to bed? You are? Good good, I’m just gonna go start up those breathing problems RIGHT NOW so you can definitely not fall asleep til those problems go away. Huh you thought you were going to be able to sleep? Funny joke😂

Showering with a picc. So I have theses disposable picc covers for the shower and there to big for my arm so I have to tape the ends down. It does help a lot more than press n seal if I do say so myself. The funny thing is that in the hospital in the bathroom in a cupboard there is always press n seal. I mean you have to call your nurse to get tape, but if you want to be a risk taker you don’t have to use the tape since the press n seal SEALS it. Hah ya i suck at puns almost as much as a vacuum does.😉 ok I think I’ve PUNished you enough with my puns for today.

Byeeee

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