Reflections on a Six-year Anniversary of a Disease That Gave Me a 50/50 Chance of Living Five Years

The title of this blog is complicated. But, then again, so is PH, right?

Each anniversary of my diagnosis has brought about a new wave of complex emotions. While the years are now somewhat blurred together, I remember the first year just being awe struck that a year since my earth-shaking news had already gone by. Subsequent years brought more and more hope, but my deep uncertainty for my well-being and even my life remained.

Conversely, year five was striking in just how un-striking it felt. Even though my chance of survival was said to be only 50/50 at five years and I had reached that point, I just felt how normal the year was (as in, very little medical drama) and was truly grateful for that sense of peace.

And now, here's year six. And, while a good one, this really has been a hell of a year! Truth be told, I still have a lot of sadness and uncertainty floating around. Right now it is centered on those I care for with the disease still struggling. I hate this disease and I hate the pain and anguish it causes. Even as I feel pretty good about my own future, too many people are not out of the woods. It can be paralyzing to be a part of. The pain of watching someone you care for suffer (and sometimes die... or almost die) from the disease you share is beyond words. You hurt for them, and at the same time, even though you try to fight it, you hurt for what your own future might be. This all sucks.

However, as PH is always a roller coaster, I am also struck by just what a crazy year of new milestones and celebrations this has been too. And, as always, while I give an honest nod to the hard parts, cry when I need to, and lower my head and ride through the storms when I have to, it is the celebrations I really want to stay focused on. So here goes...

I have just completed my third year on the PHA Board of Trustees and am looking forward to my next three-year term. And Generation Hope, the young adult group I helped start with PHA and some other patients, is turning four years old this month!

In 2012 I had traveled to the DC area to testify in front of the FDA in a bid to get them to choose PH as one of just of 20 rare disease states on which they would focus new patient-focused clinical trial initiatives. In April of 2013 we found out that the FDA had indeed selected us!

I also traveled to the DC area to PHA headquarters twice this year in order to meet with specialty pharmacy representatives. The goal - to implement a feedback system designed to improve patient care and medication delivery. This system is now FULLY IN PLACE and I still can't quite wrap my head around the idea that one patient who wrote a very polite but pretty pissed off letter, combined with countless phone calls and e-mails, and an incredibly dedicated organization for an incredible rare-disease community, has not only met big pharma head on, and then teamed up together, we ultimately made something that can have a really tangible difference. Now we look to the future where it could potentially become a model for other patient communities, and nothing would make me happier.

So... what else...

I completed my third 5K race (and second Warrior Dash... and signed up for a third) and my friend Heather and I raised $1800 for the PH cause.  When I was diagnosed I couldn't climb a flight of stairs without nearly passing out. What a difference a few years of the right medications, a holistic integrative approach, and a good dose of faith and miracles makes.

PHA launched the Chapters, and I attended the first NYC gala in honor of Dr. Robin Barst, a pioneer and hero in our community who was unparalleled in leading the fight for better treatments and at saving lives. Without her, none of us with PH would be where we are today and listening to her colleagues, patients, and family pay her tribute was an honor indeed.

And finally, this year I launched Willow Tree Wellness, my holistic health coaching practice. At first glance, this may not seem PH related, but to me it very much is. PH stole my teaching career, and I hated that. Mourned it in fact (Yeah, I cried when I got rid of some teaching supplies!). I left the classroom (ah-hem, that's a nice way to say I was covertly "let go" because sick teachers are inconvenient), and while I'm doing great, it is abundantly clear that a full time high-stress job with germy little kids is not in my best interest... so I went back to school and became a health coach. The irony of the sick girl helping people to find wellness does not escape me at all (in fact, it makes me laugh)... but I really cling to the fact that our bodies are meant to find wellness (which is different than total "good health" or a cure), and you can certainly always work to feel and do better. I truly believe that an integrative approach has saved me, and I know I can teach others to find the same.  Add to that I get to work with families and children as well and... life is good. Very, very good.


Oh, and just for fun, I noticed this blog has 13,000 hits as of today. Thanks for stopping by. :)

Happy six years to me. Here's to the next six... I wonder if I'll be a long-term survivor by then or if the bar for years that make up "long-term survival" will just keep going up and up as things get better and better for us. It's kind of amazing to wait and find out.