PHighter Friday: Colleen

It was January 2, 2008. I was recovering from a right heart catheter and laying in a hospital bed, my husband by my side, watching a doctor scribble some words on a chart. He leaned over and showed me the words “Pulmonary Hypertension”.

“This is what you have”, he said. “I can’t treat it. You need to see a specialist.”

I was 28 years old, we had just bought our first home, and my 15-month-old son was waiting for his Mama. My world crumbled.

 
Those early days are a dark blur. I saw all the scary statistics and stories online and went into a state of panic and depression. I also quickly became a master at hiding it. In the daytime, I put on my brave face. I never missed a day of work as a special education teacher. I kept my chin up and reported just the facts about my new disease to those who asked. I said I was okay. Except, I really wasn’t. I stopped being able to sleep well and spent my nights pacing the house. I cried a lot. Usually very patient, I developed a short fuse. Then I lost my job through some rather shady behavior from school administrators. Sick teachers are inconvenient. It was all a very bad place to be.

Thankfully, that worst part didn’t last very long. I realized that I had a choice. I could live like I was dying, which was no way to live at all, or choose to really live. I began picking myself up and dusting off. I started to find new ways to live fully – just under a different paradigm. I started to re-define my “new normal” the way I wanted it to look.

 

Loosing my teaching career was really hard. Teaching was what I loved. So I found new ways to do it. I taught college courses online for seven years, and I also taught baby sign language classes so I could still work with little kids. I loved doing both so much, and both let me work on my own time and in short spurts, which I needed.

I also started taking better care of myself. Always the “health nut” amongst my friends, I had let that slip. I started eating really well again, and studying up on what would make for a heart-healthy diet. I figured I couldn’t fix my lungs with a good salad, but I sure could treat my body better so it would be stronger while I fought PH.

After a while, I even began to want to exercise again. The first time I tried out the Wii Fit I got so dizzy and out of breath I ended up on the couch as the world spun and tilted around me, and my heart threatened to pound out of my chest. But when things settled, I got up and tried again. And again. And again. Then I started water aerobics. I didn’t have the strength to tread water, so I had to wear a floaty and hang out with my new friends, the little old ladies at the YMCA. They were awesome.

Eventually I started to get stronger. My doctor allowed me to push my limits a bit, as long as I wore a heart rate monitor. I started walking, even up hills. And then I joined a Zumba class. Now I have completed three 5K races, including two successful Warrior Dashes.  I’ve lost 35 pounds and my heart damage has almost completely healed.

 

The term “These results aren’t typical.” applies to me. I know I’ve been really incredibly blessed, and I am so thankful. But I also believe every PH patient has the ability to do better than they think they can, and better than the options they’ve been given. I love my PH specialist. He’s got me under the best state-of-the-art PH care. But I also know I can’t stop with just that. If I want to stay well even though I have PH, I have a responsibility to do better for myself in all areas of my life.

A couple of years ago, I attended the Institute of Integrative Nutrition to become a Certified Health Coach. Through my studies there, I came to a really good understanding of just how linked the mind, body, and soul are. I really believe that if you can spend time getting your diet, spirituality, relationships, sense of self, and joy in order, you can move mountains.

I’ll probably always have PH (at least until that cure comes!). But life is still really sweet. Now it is changing rapidly again, but in really good ways. We are adding to our family by adopting through the foster system. This week our file should go live with the state, and then we await our little girl. And I’m writing a book – not just about my experiences, but also a how-to guide from a health coach perspective that I hope will inspire chronic and critically ill patients of all walks (not just those with PH!) to find new ways to care for themselves and feel better. Learn more about the book at www.ColleenBrunetti.com/the-book.

If I could go back to those first early days and find that girl curled up on the couch crying in the middle of the night, I would give her a huge hug and tell her not to worry so darn much. Most of what I feared has not come to pass. Sure, there have been some really tough times. I’ve been sick more times than I thought possible. But I always bounce back. New medications are coming on the market quickly. There are options, choices, and miracles. And I intend to take advantage of all of them.