Haley’s Living WELL Story
I first read about Haley Bullock’s experience with gastroparesis in the New York Times earlier this month. Since I love nothing more than a GP success story, I immediately emailed Haley.
She was gracious enough to chat with me via phone last night and, I have to say, this spirited 23-year-old has truly figured out what it means to live well with gastroparesis.
First, some background info about Haley’s journey. By the time she was diagnosed with idiopathic (possibly post-viral) gastroparesis in November of 2008, she’d been sick for over a year. Like many other seemingly healthy young women, she found herself going from doctor to doctor, receiving conflicting diagnoses, and often having her symptoms written off as acid reflux or stress.
During that time, the nausea, vomiting, and weight loss became so severe that Haley withdrew from her graduate studies at Columbia University and moved back home to North Carolina. She was in and out of the hospital, as her weight dropped to just 93 pounds. Unable to tolerate Reglan due to the side effects, she was surviving on Boost and Ensure.
“Everything seemed so dire and hopeless at that point,” she told me. “There was no light at the end of the tunnel.”
Thankfully, that’s not the end of Haley’s story. It’s actually more like the beginning. Though initially she felt quite depressed by her circumstances, she ultimately decided to look at her diagnosis in a positive light.
“At least I knew what I was dealing with,” she explained. “And in a way, it was a little bit empowering.”
Starting with the all-liquid diet, she began to carefully experiment – trying one new food at a time. Every few days, she’d try another one. Eventually she became stronger and began to feel better. Just one year later, thanks to a positive attitude, a lot of patience, a good doctor, and the support of her parents, Haley is back in New York City and doing great. In fact, when we talked, she was in a cab on the way home from her job as an associate and executive assistant at a prestigious NYC real estate agency.
The first thing I asked was whether she still has gastroparesis. The Times article didn’t say and I thought perhaps her motility had resolved itself over the past year. Turns out, that’s not the case. Haley still has gastroparesis. She’s just learned to manage her symptoms through proper dietary choices, stress management, and a low dose of the quick-dissolve form of metoclopramide (which she tolerates much better than traditional Reglan).
“I’ve realized that 80% of how I feel is in my control. I can keep myself from getting sick most of the time. If I manage my food, manage my stress, and remain conscious of the choices I’m making, I do well.”
Of course, despite her best efforts and careful attention, Haley still has occasional flare-ups. And, like most of us with GP, she cites the unpredictability of the disease as one of its most frustrating aspects. But she doesn’t let the bad days keep her from the rest of her life. In what was perhaps my favorite quote of the entire conversation, she explained:
“If you have a bad day, you have a bad day. Some days I’m just too sick to go work. But that doesn’t mean I should never go to work. I don’t want this to be a life-limiting disorder.”
Here’s what else Haley wants others with GP to know:
You have to be your own health advocate. Question your doctor. Ask about every treatment option out there. The person who makes the most noise gets the most attention.
It’s important to see your doctor regularly because new treatment options and medications are always becoming available. That’s how I found out about the new form of Reglan, which really helped me when my symptoms flared up this past December.
Don’t give up. A year ago, if you would’ve told me how well I’d be doing now, I wouldn’t have believed you. I want people to know it really can get better.