A Big StepRecently I did something with my kids for the first time that previously, I didn’t think would be possible. I took them both, by myself, to eat inside at Chick-Fil-A...Reactions0reactionsComments0 comments
Letting Yourself Be LovedI’ve been doing a lot of inner work the past few weeks. I’ve spent so much time focusing on my physical health I sometimes forget my mental health needs my...Reactions0reactionsComments0 comments
Tips for Employment with Cystic FibrosisAs Cystic Fibrosis patients continue to age, it is important to consider what types of jobs and careers would suit them. With advancements in both technology and medicine, more opportunities...Reactions0reactionsComments2 comments
My Rare Cystic Fibrosis Diagnosis StoryGrowing up with a rare disease, I didn’t realize how truly special I was. The novelty of my existence and the chance match of my genetics was completely lost on...Reactions0reactionsComments0 comments
The Many Colors of Cystic Fibrosis: MetallicInspired by the song “Joseph’s Coat” from Joseph and the Technicolor Dreamcoat, I was reminded to explore colors such as silver, gold, and other metals. If I see a rusted...Reactions0reactionsComments0 comments
Preparing for TrikaftaWith the FDA approval of Trikafta for kids 2-5 years old, our daughter will be starting the medication earlier than expected. She turns six in July so we were already...Reactions0reactionsComments2 comments
Hospitalization Creature ComfortsHave you ever heard of creature comforts? I’ve listened to this saying occasionally. Creature comfort is something that helps people feel physical comfort. This can look like certain foods, specific...Reactions0reactionsComments0 comments
Dealing with typical illnesses with my CF-erA few months ago, we went on a family vacation to the beach. Because it was early April, I figured the typical winter cold and flu illnesses were no longer...Reactions0reactionsComments0 comments
A Letter to My Morning LungsDear Morning Lungs, I’m writing to tell you that you’re doing your best. I don’t blame you for your sluggish mood every morning. I am sluggish and tired too. It’s...Reactions0reactionsComments0 comments
In Sickness and in Health: Telling my Partner I have CFI have lived with cystic fibrosis (CF) my entire life, I know it like the back of my hand. With CF being a rare disease, there are still a lot...Reactions0reactionsComments5 comments
30 Year WaitHello all. This is my story. I was really let down medically. 30 years ago, when I was 7 months pregnant with my second child, they was giving pregnant women...Reactions0reactionsComments0 comments
Remembering Kadeem MorganWe are incredibly saddened to share that CysticFibrosis.com team member Kadeem Morgan passed away on June 27, 2023. Kadeem was a talented musician and DJ who also went by the...Reactions0reactionsComments0 comments
Ask the Health Leaders: More Than Our LungsA common misconception about cystic fibrosis is that it only impacts the lungs. We asked our Health Leaders what other parts of their health are impacted by CF. Read on...Reactions0reactionsComments3 comments
A Sniffle Away from Losing My MindThe unrelenting storm of cold and flu season has threatened to rock the boat. By boat–I mean me–a mom living with CF treading water. Tiny runny button noses and explosive...Reactions0reactionsComments0 comments
Life, Love, and LungsI recently rekindled a relationship that had ended some months before as I felt my life slowly falling apart. I received difficult news at a doctor's appointment and felt overwhelmed...Reactions0reactionsComments0 comments
Learning to Live with GriefGrief seems to go hand in hand with CF. It is impossible for sorrow not to rear its ugly head when battling a lifelong chronic illness... “chronic” stands for long-term...Reactions0reactionsComments1 comments
A Letter To A New CF MomDear New CF Mom, I noticed you and your child today at Great Strides. Your newborn was wearing the same purple CF Fighter shirt my daughter was wearing. So many...Reactions0reactionsComments0 comments
How I Combat Loss of Appetite and NauseaGetting sick is part of being human. It may be from a virus or a bacterium. But people get sick, and it can be hard to feed your body well...Reactions0reactionsComments0 comments
Too Much Immune System for Me: Immunosuppressants and CFSometimes, I introspectively peak at my mangled innards and wonder how this all came to be? You manage one chronic illness your whole life? Sure, no problem. You get used...Reactions0reactionsComments0 comments
Being Diagnosed With Difficult InfectionsSometimes in cystic fibrosis (CF) you just happen to pull the short straw. It doesn't matter how compliant you are with daily treatment, or keeping a “CF healthy” diet. You...Reactions0reactionsComments3 comments
