The threat of anaphylaxis has been the hardest part of it all. It can happen slowly or suddenly, whether I'm watching a movie or on a road trip, surrounded by miles of brown nothingness. It's a frightening pressure unlike anything I've ever experienced—if my trachea were a keyboard, this would be a fortississimo.
Every morning there are new hives, different things swollen. Perpetually tumescent, I've become a living blow-up doll. There has also been so much wasted time, where short drives have taken hours because I'd think I was asphyxiating, or when my computer has sat untouched for days. I once spent an afternoon taking small sips of water to make sure I could still swallow during one of my episodes, refilling the glass and drinking until it was time for my next dose of steroids. It was only when the sun set that I realized three hours had passed....
It’s this small group of people online, hailing from right here in Los Angeles to as far as England, South Africa, Nigeria, and beyond, who've been able to help me cope with the anvils that angioedema throws at you. People I’ll likely never meet.
Besides support, I've gained valuable treatment insights from them, too. The nature of this condition—that it’s idiopathic—means that doctors really don’t know how to treat it or what causes it.
But my fellow sufferers have taught me that I do have some control over this. I learned about natural remedies like nettle tea and quercetin, a bioflavonoid derived from fruits. I learned about foods that were high in histamine and salicylates and read the latest peer-reviewed articles about angioedema they shared. I learned about how simply hydrating could lessen the swelling and hives. How Reiki and acupuncture could help with the panic attacks that were now accompanying my bouts of throat swelling. How it was possible to manage this disease on antihistamines alone, as opposed to the heavy steroids I was taking.