Part 1: What does it mean to be sick? “You don’t look sick” is a common phrase heard by those of us with “invisible” illnesses. I think it’s often meant as a compliment, but sometimes it is an accusation. There seems to be an expectation that if we’re “sick” there will be some visible sign…
Category: PCD
Setting Priorities
I took a shower on Friday. It had been 10 days since my last shower. Or maybe it was closer to 14 days. I’m not really sure. I know that probably sounds gross to most of you. I’m lucky that I apparently don’t have strong body odor. Yes, I’ve asked. Since I don’t have a…
New York Marathon Take 2
In 2017 51,307 people started the New York marathon. All but 541 people finished the marathon. I was amongst the starters and, unfortunately, I was amongst the 541. I have my reasons for not finishing, but to be honest, I still beat myself up about the race. I don’t really beat myself up for not…
The Lung Transplant Evaluation Process Begins
On Wednesday, March 27, I started the lung transplant evaluation process. I had my initial appointment where the pulmonologist goes over my history, gathers more history and information and makes a decision on moving forward with the evaluation process. I started writing this blog the night before the appointment. I started with letting you know…
PCD – There’s More to the Story
This post is authored by Renee Dale, a fellow PCDer. Primary Ciliary Dyskinesia (PCD) Awareness Month (October) is a necessary part of helping the PCD community find a cure. But mid-way through the month, every single year, it hits me and hits me hard. I look around and see all this effort by families and friends…
My Chronic Disease (PCD) is a Full Time Job
I have a full time job. Two of them, actually. My first is as a program analyst; I get paid to do it. My second is as Primary Ciliary Dyskinesia (PCD) patient with bronchiectasis. It’s not the kind of job that pays well or has great benefits. In fact, maybe it should be called my anti-job….
It’s All A Matter of Perspective
I saw my pulmonologist today and left feeling happy and excited. I’ve been struggling with my running. To the point of there isn’t much running happening. I’ve been working on my running for over a year now, and as of today, I can barely run 1.5 minutes. And it’s not because I’m taking it too fast. I’m…
Running On Air 