Activity

I have a weird relationship with certain items of clothing. I just posted about a new pair of leggings I tried on my Instagram, and how deeply insecure I feel in them. Some of this is because I only like to show scars and tubes in certain styles (my “safety items”), and some is because I hate clothing that squeezes my stomach.

I ended up giv…[Read more]

On Instagram over the weekend, I rehashed the story of a freak accident that took place 10 years ago. It’s a strange story involving a lawnmower, Home Depot, my ex-husband, and a severed Achilles tendon. The months of recovery that followed were some of the most difficult of my life.

A doctor once told me that I have a “tendency for the…[Read more]

Women caring for their children with cystic fibrosis express greater anxiety related to COVID-19 than the young patients themselves, a survey found. Read the full story here.

Do these findings surprise you? Why or why not?

I recently had my first telehealth CF clinic appointment. To be entirely honest, I didn’t have high hopes or expectations for it. I simply didn’t see how an appointment over the phone could come close to the level of care I receive in clinic (not to mention that PFTs were out of the question).

As great as my team is, I just didn’t imagine my…[Read more]

QUESTION: Do you see a mental health therapist through your CF clinic or on your own?

I have never really been into therapy “for myself”. I always had too many medical appointments on the schedule, so the first thing to go was mental health, to make room for more “urgent” health concerns.

My daughters have gone to therapy for years, and…[Read more]

Have you ever had to be a caretaker?

My partner has had two oral surgeries in the last two weeks and I’ve been a complete nut about taking care of him. I’ve lost sleep. I made him a schedule of meds and hung it on the fridge. I’m tracking his progress more diligently than either of us have ever thought about my own antibiotics or treat…[Read more]

Kaftrio (ivacaftor/tezacaftor/elexacaftor) will be available in England as soon as the medication is approved by the European Commission. Click here to learn more.

What do you think of this news?

QUESTION: What is the most ridiculous thing you’ve been told about your mask lately?

I have received a lot of intense comments from strangers the last couple of weeks, most of which were refuting the need for masks. To be fair, I’ve posted about their usage in the history of CF more than anything… but not everyone takes the time to rea…[Read more]

During my hiatus from the forums, I shared an update on Instagram that I wanted to quickly share here as well.

I started Trikafta in November, near the end of a two week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling overall. I was NOT one of…[Read more]

I haven’t always had a wonky pancreas, but it has become more so throughout the years. A lot of my billiary backup seems liver related (my enzymes get elevated), and my pancreas reacts like the overly-mouthy best friend who stands a little too close.

I take Creon, like many of us, and watch my sugars, but I’m lucky to not need any major i…[Read more]