Friday, June 28, 2013


I think about the concept of "wellness" a lot. Part of it is probably because I am a certified health coach now, and so helping people to a place of wellness is what I do.

The irony of this does not escape me. I have one of the most deadly lung diseases on the books, and I teach wellness. Actually, I think having PH gives me a pretty unique platform to do this from. Because, against all odds, I'd call myself a pretty healthy person. First, I was supposed to be dead. But that didn't happen. Then I was supposed to get progressively disabled. And that happened for a short while, but it has reversed. Then the meds were supposedly going to stop working someday. And that hasn't happened.

In fact, in the past couple of years I went from being critically ill to probably the strongest I've ever been. Why?

This is the funny part - everyone I know can tell me why. And the reasons fall into a few distinct categories.

The medical folks: "Your medications are working! Yay for modern science!"

The religious folks: "God has heard our prayers! Yay for miracles!"

The alternative folks: "Medication could never do this! Yay for integrative approaches!" (fill in your favorite cure-all: fish oil, kale, meditation, etc.)

And I sit here listening to all these opinions (one rarely takes into account the next), smiling and nodding, and I just keep thinking... what if, just what if, the approach to wellness is not a single road? What if the definition of wellness, and the definition of health (meaning an absence of sick) are two different things?  Can you be well even though you are sick?

I am not cured by any means. No - PH is still very much a part of me. I am, in fact, still very very sick. I fully realize that all this progress I've made may reverse and all the dark predictions of what this disease can do, what it does to my friends, may happen to me. I suppose the fear of that drives me too.

All I knew when I began this journey is that the status quo of having PH was not going to work for me. I rejected the premise of illness overtaking my life. Idealistic? Absolutely. Stupid? Could have been. But it worked. 

What I knew for sure is that there were medications that I could take, and they would buy me time. But the financial and physical prices would be, are in fact, very high. With no cure yet in sight, this simply was not good enough to be the stand-alone approach. I came to know that if I was going to get well, I had to get out of the PH box as soon as possible.

And that led to a twisty-crazy-ever-changing path to wellness that I am on. I take supplements, I practice mind-body work, I exercise, I drink my kale smoothies, I see my alternative practitioner, I see my doctor, and I take my meds. And perhaps most importantly, I fight like hell. Take the fight out of the halls of the hospitals and into the world. Awareness raising, advocacy, patient support. Striving for altruism is key too. You can not fight this for your own sake alone.

So, no, it isn't just the medication, or the prayer, or the alternative work. A path to wellness is a deeply personal thing. I don't think what I'm doing will necessarily work for the next person. But I do believe we all have the potential to find a personal level of wellness, no matter what the physical condition and prognosis is. And that is a journey well worth taking.


  1. You continue to inspire me Colleen. :)

  2. Hello Colleen,
    Your story is powerful and impactful. Liked reading your perspective towards health involves mind, body, and spirit. Someday we are hopeful all treatment options will be offered under one "roof" so people can choose how they wish to be treated.
    Thank you for sharing! Wishing you a continued healthy lifestyle!

    Sue Eull RN, CHHC
    Eull's Health Coaching

    1. Amen, Sue! Wouldn't that be an amazing day? I see signs of it coming, for sure. But I think it has to be patient driven. :)

  3. Colleen:

    As always what a wonderful blog. You are such an inspiration to me and I am so grateful that I have the pleasure of knowing you.

    Jane ~ mom to Nicole

    1. Thank you, Jane. The pleasure is mine. You are such an incredible advocate. Nicole is often in my thoughts and prayers (you too!)

  4. Colleen, I like you are stronger than I have ever been. I exercise and juice and I feel good. Having a positive attitude is also a large part of the battle. I know I am lucky my PH is mild but I also am determined to keep it that way.


    1. That's awesome, Joann! Keep up the good work!