It’s time to ROCK THE VOTE to answer the question, “What is the most ANNOYING part of living with cystic fibrosis?”
Voting begins today. Here’s how it’s going to work… Below you will see TWO Google forms. The first will contain “games” from the SYMPTOMS and TREATMENTS regions, and the other will have “games” from the INTERACTIONS and ROADBLOCKS regions. Make sure you fill out both polls COMPLETELY. There are two pages to each “part” – each page has 8 games… it should take you no more than 90 seconds to complete the entire thing. Select voting will ALSO be available on the Salty Cysters Instagram story — @SaltyCysters
Here’s a note on a few key matchups….
- Distended Stomach #6 v CF Voice #11 – The CF Voice is the “raspy” voice that impacts a lot of patients. As it turns out it’s actually been studied and is more common in females. The Distended Stomach, otherwise known as the CF belly, is what a lot of people with CF suffer after eating… sometimes we call it “bloating.” It hits people with CF in varying degrees.
- Daily Treatments #1 v Reciting the Medication List #16 – “Daily Treatments” is sort of the catchall phrase for the Nebs/PT routine all of us with CF perform each morning and night. Our Treatments are our lifeline, and quite time consuming. They can take anywhere from 30-90 minutes each session depending on prescribed meds and methods. Reciting the Medication List is pretty self explanatory… Try remembering a list of 20-30 medications off the top of your head before heading in for a surgery and let me know how it goes!
- The INTERACTIONS region is filled with things people say to those of us with CF – “You don’t look sick!” #1, “You should stop smoking!” #16, “Are you contagious?” #6, “How are you feeling?” #14, “You’re so lucky, you can eat whatever you want!” #15 – as well as a number of things people with CF have to navigate in the outside world to receive proper care or treatment.
- Some of the “teams” in the ROADBLOCKS regions are a little…. unusual. Salting #16 is what happens to some people in lieu of sweat… some of us with CF don’t perspire sweat correctly, rather salt just accumulates on our skin, and as you can imagine it leads to chafing. Purple #8 is the “awareness color” assigned to cystic fibrosis… to this day I’ve never learned WHY. Moon Face #12 is what happens to some people who take extended doses of steroids to combat inflammation, or organ rejection in the case of a person post-transplant. A person’s face essentially puffs up…looking like a full moon. Inhaled Medications Misting onto Screens #13 is what happens when a person is doing a neb in front of a computer or phone.. the “mist” that comes off the nebulizer mouthpieces sort of crystalizes in the environment around us after treatments, and it’s a pain in the ass when it gets onto a screen… you should see my laptop. Knocking Over a Cup Full of Mucus #10 is about as horrible as it sounds. Some of us use cups to collect the mucus that we cough up throughout our treatments sessions… especially those of us with a productive cough (I am one of those people). Sometimes shit happens and the cup gets knocked over, leading to a mess of what can only be described as a cross between Nickelodeon slime and rotten egg yolk.
Remember we are looking for the MOST ANNOYING part of living with CF, and I want to encourage everyone to vote – whether you’re living with CF, you love someone with CF, you’re a sibling, parent, friend nurse or just passing through. Everyone can vote!
Also… for the haters out there… we’re doing this in good fun. When it comes to living through some of the list you’re about to see below, sometimes the best course of action is to just laugh the shit we put ourselves through on a daily basis…. it goes a long way.
That’s it from me! Happy voting, we will close the FIRST ROUND polls tomorrow, Friday, March 16.
SYMPTOMS/TREATMENTS REGION POLLING