Rise and shine and wheeze!

It’s day five waking up without having taken the cystic fibrosis “miracle drug.” Although I’ve toyed with different dosages over the years—even skipping three days between doses—this is the longest I’ve been without the drug since 2021.

For those who are just catching up, the short story is this: As the medication accumulated in my system, my mental health began to decline. I worked with several medical teams to try to understand and address these life-limiting side effects, but we reached a crossroads. So, on Sunday, April 20, I took my last dose.

My CF symptoms are becoming more noticeable with each passing day. I’m back to the constant sighing that accompanies my shortness of breath. I’m clearing my throat at regular intervals. My voice is becoming breathy again. While the coughing isn’t too bad yet, it’s trending that way.

I’m mostly optimistic, but I wanted to cry yesterday when I was doing laundry. The sheets I moved from the washer to the dryer felt as heavy as bricks. These moments of full-body exhaustion will become the norm again, but I keep reminding myself that I did just fine with fatigue for the majority of my life.

I know I will grieve the newfound physical health I’d gotten used to in recent years. But, ultimately, I’d pick happy-and-in-the-hospital over the debilitating challenges I’ve been facing.

What a world it would be if I could have both physical and mental health at the same time! And I believe it’s possible—especially if you contribute toward a cure for CF: https://fundraise.cff.org/GreatStridesATL/drew.