The Right Way to Be Sick

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…

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…

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….

Jeff Galloway 13.1

For my 5th new state for 2015 (8th new state so far) I had the pleasure of participating in the Jeff Galloway 13.1 in Atlanta Georgia on December 13th. Doing this race was a last minute decision. I’d known about the race since September, when I met Jeff and his wife, Barbara, at the Disneyland…