There are times when the fear of my HAE symptoms makes it difficult to just get through the day—eight hours of work, attending school, and caring for family. Often, when I return home in the evening, I want to retreat to my bed and not move until morning. I have made it a priority to fight that desire. Although it can be taxing at times, I personally believe exercise in my life is important. You should always talk to your doctor about any lifestyle changes, including starting an exercise routine.
It was a warm summer evening, and Justin and I had just returned from a dreamy dinner date. We had been dating for several months, and I felt completely at ease with him. Justin’s cats greeted us at the door of his cozy apartment, and I quickly made myself at home. Sweet and understanding, he was incredibly supportive when I told him about my HAE—but he had yet to see it in action.
To get the most information and the best discussions out of my doctor’s appointments, I believe it is crucial to be proactive: To take ownership, be ready to communicate clearly, and ask the appropriate questions. Arriving prepared is of utmost importance. These are the lessons I learned right from the time I was diagnosed, and they’ve been lessons I’ve followed ever since!
My husband was diagnosed with HAE at a young age. When he’d have an attack, he had the benefit of knowing what was wrong with him. One of his problems, though, was that he didn’t know what the specific triggers for the attacks were. In the first several years after I found out about my husband’s HAE, it felt like I had a better chance of winning the lottery than helping him figure out what his triggers might be. We started keeping a diary of his attacks, and we’ve picked up on some potential patterns that we’ve shared with his doctor.
I was exploring the booths at the 2011 HAEA National Patient Conference in Las Vegas. Despite the room being incredibly crowded and bustling with excited people, there was no way I could miss the flash of orange at the end of the corridor. As I got closer to the Shire table, a man with kind eyes and a warm smile approached us. That was the first time I met my Case Manager.