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…

Running On Air as a Non-Profit

Today is October 1, 2022 and the start of PCD Awareness month.  To me this month is all about raising awareness of PCD and raising money for the PCD Foundation.  I’ve been asked why I made Running On Air (ROA) a non-profit and asked questions about if I was still supporting the PCD Foundation, since…

Years in Review

I haven’t written an end of the year blog in a few years so this one will actually go back to 2019.  Sometimes it’s hard to separate out Running On Air and my accomplishments since many of the things I do are for Running On Air.  You’ll find a mixture of both in this retrospective,…

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…

Walking 26.2 Miles Makes Me a Loser

Someone at my gym was wearing an Under Armour shirt that proclaims: “Losers Walk”. I’m sure this was meant to be motivating. Instead, it is a message of superiority and exclusion. If you can’t run; don’t show up. For those of us who struggle to run, for whatever reason, the message is that we aren’t good…

11 Things You Should Know About Supplemental Oxygen

Breathing.  Its one of the easiest things in the world to do.  Until you can’t.  If you’ve never had to wear supplemental oxygen, there are a few things you probably never thought about people going through just to breathe.  When you can’t breathe, the process to get supplemental oxygen can be difficult and frustrating.  When…

Being Active with a Lung Disease is a “Leisure Activity”

This post is authored by Evans Wilson.  Evans has Pulmonary Fibrosis (PF) and Pulmonary Hypertension (PH). Mary asked me to write an article on my experiences related to oxygen, getting it, not getting it, using it etc. It is notable that I am writing this April 10 after being asked to do so March 17….

Marathon Training Begins – Unofficially

This is my official unofficial announcement that I will be doing my first marathon this year – The New York City marathon. Why is this officially unofficial? Because registration for this race isn’t even open yet. They have a lottery system which opens on January 17. Those selected by lottery will be notified on March…

2016 In Review

This has been another amazing year for me and Running On Air. Not all of the 2016 goals were met, but we came close to some and have a lot to look forward to in 2017. Run the Year Once again I was part of Run the Edge’s Run the Year virtual challenge. I didn’t…

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…