When I think about commitment—whether it’s to work, friends, or family—I think about memories. My goal in life is to embrace any and all opportunities to create memories with the people I love.
I know HAE attacks can be unpredictable, and no one knows the future. At the end of the day, no matter what we call ourselves, all that matters is caring for our loved ones with HAE. For me, being a “caregiver” means doing what I can to maybe help ease or lessen the issues that come with HAE and create positive memories.
As a “caregiver,” I have become one of the most organized people I know. Fortunately, I was already detail-oriented; now I am faced with keeping a detailed HAE diary for my husband to record information about:
- HAE attacks;
- possible triggers;
- course of treatment;
- treatment results;
- prescription information;
- medication delivery schedule; and
- contact information for medical professionals
I often joke with my husband about how lost he will be if something happens to me because I am the keeper of all of the information.
But when I think about how HAE has impacted my life, I often refer to proactively caring for my loved one as “fighting the fight” because more often than not, it feels like a fight:
- a fight to remain optimistic in times of pain and frustration;
- a fight to have others understand what we in the HAE community are faced with; and
- a fight to have medical professionals and health insurance companies hear and understand our needs
Even if it feels like I’m in a fight, I wouldn’t have my life as a “caregiver” any other way. Being a “caregiver” allows me to put forth my energy and drive into being as proactive as possible to ensure as many good days and good memories with my loved one. Because of that, I am honored to be called a “caregiver.”
What does being, or having, a caregiver mean to you? Leave a comment below!