Hospital Admission

I’m just going to keep this post short and simple, I’m being admitted for a lung infection. Haven’t been in for about six months, so that’s good compared to the last two years of being in every three months. Thankfully I’m done with school so I don’t have to stress about that.

I don’t think I’m going to do a hospital Diary’s this time, so sorry if I stop updating for a week or so.

Here’s a picture of my cat I’ve never mentioned.

Most Common Misconceptions/Comments/Questions on Cystic Fibrosis

So I got all these from other Cfer’s via Reddit, the Breathe in podcast by Gunnar Esiason and the Salty Cysters, also thanks to The Cfer’s Guide for some ideas.

https://soundcloud.com/user-996750830/breathe-in-72-2019-cystic-fibrosis-march-madness-bracket

https://cfguide.wordpress.com/

  • Are you okay?
  • Do you want a cough drop?
  • Do you want some water?
  • Are you contagious?
  • You’re always sick!
  • Do you have the flu or something?
  • But you’re so young!
  • How long have you had it?
  • I hope you get better soon!
  • Can’t you just get a transplant?
  • So its like asthma?
  • Oh I have ____ so I get it!
  • I wish I could eat like you!
  • I wish I had your weight problems.
  • I knew someone that had that. They died.
  • Have you tried essential oils?
  • Maybe it’s because you’re taking to much medicine.
  • You should drink more water.
  • Have you tried _____ diet?
  • You don’t look sick!
  • I know, allergies are really tough this year.
  • Think happy!

Just some quick Late Night Thoughts

I’ve been having problems expressing my feeling lately. I’ve tried writing poems and blog posts about what I feel but I can’t seem to put it out into words. My anxiety has been growing and I don’t know why, maybe it’s because of health. I feel like my life is surrounded by my cystic fibrosis. My parents always say don’t let it run your life, control it, because in reality it’s only a small part of it. Which is true in some way but it’s so hard when it feels like it’s taking over.

I think about what if I didn’t have it, and then I promptly freak out. If I didn’t have it I don’t know where I’d be. I would probably still be dealing with some mental health issues because honestly what teen isn’t these days? I’d be in public school, not go to the hospital every month or so, not be on so many pills or have so many responsibilities. But I wouldn’t be as caring, understanding, so grateful of everything. I try to look on the bright side, because in reality if I didn’t have Cf I don’t know where I’d be or honestly who.

Spoon Theory

So in honor of Rare Disease Day I’m going to write about the spoon theory!

As most of you know I have cystic fibrosis which is a genetic rare disease that has no cure, it’s also known as cf or 65 roses. These past two years have been hard, my health has started to decline and I’ve developed depression and anxiety. I’ve read a lot of stuff and one thing I discovered was the spoon theory. It’s a way for people with chronic illnesses to explain their energy levels in spoons.

Say I have 12 spoons in a regular day

It takes me 1 spoon to get out of bed

2 to take a shower

And so on

When I’m having a bad day I’ll have less spoons

Say I wake up with 5 spoons

I have to prioritize what I’m going to do

If I use more then I have it means I’m working on negative spoons, which then takes spoons out of the next day