Bronwyn and Jeanne,

Thank you both for the kind messages left here! You may have seen me mention that I’m in graduate school, pursuing a degree in social work. I am able to do this because of the miracle that Trikafta has been in my life, but it’s taken up so much of my time and energy that I’m needing to take a step back in some other areas… Read more

Forum friends,

For the last few years, I’ve had the pleasure of moderating this forum. In that time, I have worked with some amazing co-moderators, I’ve learned so much, and I’ve met some truly incredible people here. The time has come, however, for me to take a step back. I will still visit the forum as a member, but after this… Read more

Jenn has such a way with words, and I love that she doesn’t shy away from talking about the harder aspects of CF. While she and I are in different positions — she being the parent of someone with CF, and me being the person with CF — she is spot on when she talks about it being a team effort. I am so glad to have someone in my corner 100% of… Read more

Personally, I can’t say that I experience “routine fatigue.” The only part of my life that follows much of a routine is my healthcare. My respiratory treatments have been a “built in” part of my day for so long that I don’t even really think about it anymore — I just do them. Things like pills and sinus rinses, those all happen in the morning… Read more

In her recent column post, Nicole Kohr expresses her frustrations with maintaining a routine and shares things that help her overcome “routine fatigue.”

“Routine wants me to be structured and consistent, but my brain has different plans. For the most part, I thrive on creativity and inspiration. This is unfortunate because both cystic… Read more

I think reading a book a month is a great goal! I used to read for entertainment more than I currently do — grad school has me drowning in textbooks for the time being. During the course of my classes so far, I’ve kept a list of book recommendations from my professors and classmates. I have no idea when I’ll get to them, but I look forward to… Read more

What is a “win” you’ve experienced in the last month? Related to CF or other areas of life; big or small, silly or profound. Tell me something that you’ve been blessed with, a thing you’re kicking butt at, or an accomplishment you’re proud of. Let’s celebrate our wins together!

When I was young, my mom was always on the lookout for high-fat, high-calorie recipes. She wanted to be sure to pack as much nutrition into our food as possible. As I’ve gotten older and modulators have entirely changed the weight game for me, I don’t necessarily require as many calories as I used to. However, I am still a major foodie and… Read more

A few of mine are Schitt’s Creek, Parks and Rec, The Office, The Mindy Project, and — something of an entirely different feel — Forensic Files (I’ve been told this is odd, but the narrator’s voice and process to finding justice are super comforting to me). As Gina said, I love something I’m familiar enough with that doesn’t require my… Read more

Deanna, it’s interesting to me how we can all culture SUCH different things! I haven’t ever had either of the things you mentioned here, and I genuinely had no idea a human could contract Bordetella from a dog (I’ve had them my entire life). Thanks for sharing this! I hope you are currently doing well. How are you tolerating Trikafta at this… Read more

I’ve mentioned a time or two that I am currently in grad school pursuing a social work degree. As I’ve been on this learning journey, I’ve been reflecting on my own experiences with social workers.

A social worker has been part of my interdisciplinary CF care team since I was a child, but I haven’t always connected with them. However, in… Read more

For as long as I can remember, I’ve cultured pseudomonas and various types of staph – sometimes methicillin-resistant (MRSA) and sometimes just regular ol’ staphylococcus aureus. In my family, we’ve always referred to them as “bugs.” Since being on Trikafta, I’ve had much less bacterial growth but anytime I have a sputum culture, my old friends… Read more

Okay, I’ll be the first to say — I didn’t hate Five Feet Apart. Actually, while it was far from perfect, it’s probably been my favorite media portrayal of CF so far. The mistakes and exaggerations of certain things drive me a bit crazy, but I thought it did such a good job of portraying the emotional elements of CF, particularly when it comes… Read more

Janee, I love this so much! You have overcome many things, but what I love most is the positivity radiating from this post. I hope your year of 60 things is wonderful! Maybe you can give us some updates throughout your year of new adventures.

In her recent column, Lara Govendo shared about her love for books. “They bring me comfort like a cozy blanket. They deliver joy to my weary soul. They’ve healed me on so many levels. And they help me escape my reality when I need a break.” During different seasons of my life, I have read more than others. Currently, when not reading… Read more

Christina, remaining positive for three weeks is so interesting to me! Especially with no symptoms. When my daughter first had COVID, she was asymptomatic and nobody else in the house caught it. Hopefully this illness moves out of your home quickly and without complication.

Ron, I am so glad to hear that you’re both doing okay now!

Annette, what a stressful situation! I hope your husband recovers fully and without complication, and I hope you stay COVID-free!

Naturally, the end of the year represents a time of reflection. As I’ve been looking back on the year, I am filled with so much gratitude for my health, my family, the experiences I’ve had, and the steps I’ve taken toward my long-term goals (starting graduate school was a giant leap for me).

As the year comes to a close, what are some… Read more

Last week, I had CF clinic, and I am happy to report that everything went well. My favorite clinic appointments are those where there are no new issues to address and nothing too “exciting” going on.
This has largely been the case for me since starting Trikafta. That fact combined with the added benefit of having telehealth available at… Read more

Okay, I absolutely love The Black Parade! My brother was really into punk rock when we were in high school, and his music tastes influenced mine quite a bit at that time. My daughter and I have definitely bonded over our shared love of music, and we especially love experiencing it live! In the last year we saw Harry Styles twice (I told you… Read more

Judy, this is beautiful! I am so happy you have Don in your life, and I am sure he feels fortunate to have you. My partner has also been someone I can lean on, and he is such a loving caregiver.

November is National Family Caregivers Month in the US. As I reflect on my caregivers through the years, I am overcome with gratitude for their love and service. The caregiving experience is something I’m not very practiced at, as I have more frequently been on the receiving end. However, I do know that it can be both a physically and… Read more

I grew up surrounded by extended family on my mother’s side. We got together very frequently for dinner, movies, summertime barbecues, etc. I can’t recall specific holiday traditions but my childhood as a whole was colored with family togetherness. As an adult, some of my siblings and I have begun new traditions with our children.… Read more

Judy, what an incredible shock! I’m so glad you’re still here. I can only imagine the relief that came with an official diagnosis… finally! But I can also imagine the frustration of having to convince medical professionals that you do indeed have CF while also being the one to teach them about it.

While cleaning my house this morning, I had a TV show playing in the background when something caught my attention. One of the characters in the show had received a cancer diagnosis, but she was hesitant to ask her friend to help her through treatment. “I don’t want to be a burden,” she said. To which her friend responded, “You are not a… Read more