Activity

Growing up, my parents were told that it was important that my sisters and I get as much food into our bodies as possible. Calories were what mattered most, and it didn’t really matter what kind of calories we were getting, as long as we were getting enough. Snacks and junk food? Sure! Second and third helpings? Go for it!

Even if I wasn’t…[Read more]

I felt completely lost this last hospitalization. Due to what was going on with my head (I had a spinal headache), I was on a cocktail of meds the first few days that really impacted me cognitively. I felt slower… my eyes felt blurry… my thumbs felt slow when I tried to type or text my friends. I felt completely cut off from “myself”, which is…[Read more]

Hey y’all! We’re so thankful that Joe is our MCM. @joe_komitor is 23 years old and is from NY! Here are three things important to HIS story with CF (be sure to answer his Q in the comments!)⠀
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😎I was diagnosed with CF at 18 months old in 1998. Growing up I had a relatively normal childhood and was really active with sports. I was very fo…[Read more]

Sleep hygiene is extremely important for people with cystic fibrosis, more than half of whom complain of sleep problems, experts say. Click here to learn more about this topic.

Do you get enough sleep? Why or why not? What happens when you don’t get enough sleep?

I have never been a “germaphobe”, despite our predisposition for infections and sickness. I always thought that stressing about what we can’t control only causes more stress. Sometimes I’m even a little negligent in caring because I don’t want to be ‘that person’ who’s always stressed about germs and her health, when the world spins on without me.…[Read more]

A study says variations that lower expression levels of the RNF5 gene may protect some with CF from frequent lung infections by stabilizing CFTR protein. Click here to read more.

What do you think about this study and its findings?

I’ve been spoiled when it comes to pharmacies and getting my specialty meds. For the last couple years, I’ve been able to fill my prescriptions at a specialty pharmacy that works directly with my hospital/care team. I’ve gotten a call from the pharmacy tech, placed my order, and had my meds magically show up on my doorstep the next day.

Due to…[Read more]

I posted a video of my 10-year-old daughter and I preparing my home IVS on an ordinary day (mostly because I was trying to share her adorable words in the caption), and was wondering: How do you guys feel about this?

I used to hide everything from my kids in the past. Now, I just hide anything that might cause them distress (you’ll never catch me…[Read more]

Thanks to harsh, mood-altering medication side effects, Brad Dell found himself needing to repair his social life. Click here to read the full story.

Has this ever happened to you? What did you do?

Hey, guys, we’re excited to introduce our first WCW of the year: Carly!
@cccarlylee is 23 and from Idaho. Here are four things important to her story with CF. Be sure to answer her question!

❤ I was diagnosed at birth after having an emergency surgery for a ruptured meconium ileus. I’ve been exciting from the get go! Thanks to an awesome…[Read more]

Like many CF symptoms, my energy level is always a bit unpredictable. I can go from having a good amount of energy to having absolutely none without a moment’s notice.

I’m currently in a no-energy phase, and it doesn’t make sense to me. I’ve gotten decent sleep, I’m not overly stressed, and I’m feeling pretty well otherwise. But I’m having…[Read more]

I’m going to be honest: I prefer IV Bactrim to oral Bactrim, even though neither are easy to tolerate for long periods of time. The latter does slightly more damage to my stomach than the former, and I often lose too much weight when I’m on it (from feeling ill).

I know some people feel worse on IVS before they feel better, but I normally…[Read more]