Living With Chronic Hives: My Story
Life lessons learned from managing a visible illnessby Marisa Zeppieri-Caruana Patient Advocate
As someone who has lived with allergy and autoimmune issues since birth, I probably shouldn’t have been so surprised when a few random hives turned into a two month, life-changing ordeal. Yet there I was, in the midst of a brutal upstate New York winter in 2014, about to get a diagnosis of Chronic Urticaria, or chronic hives.
It was the middle of December and my husband and I were decorating our new home for a classic “white Christmas,” as our area of New York was getting hit with some of the lowest temperatures and largest amounts of snowfall it had had in years. Both native New Yorkers who had recently moved back north from Fort Lauderdale, Florida, we were looking forward to eggnog, a roaring fireplace, and decorating our hand-picked Christmas tree.
And then a fiery tingle started on my thigh…
To be honest, I didn’t think much of the sensation that first day. I attempted to scratch it through multiple layers of clothing and continue on with my holiday decorating and baking.
It wasn’t until the next morning, when I was undressing to shower, that I noticed a strange, flat, pinkish rash staring back at me from my pale legs. As someone who has lived with Systemic Lupus since her early 20s, the first thing I noticed was the location and distinguishing marks of the rash. It didn’t look like a typical lupus rash that is often found on the face or trunk of the body.
This particular rash was localized to the side of my thigh and felt more hot and tingly than itchy. The heat from the shower seemed to irritate it, igniting the pink flat bumps into bright red welts that seemed to increase in size within a few seconds.
I cut that shower short and went straight for my cortisone cream.
A few hours later, I undressed in my bathroom to get a full view of my leg. At this point, the rash had spread down to my ankle. I remember the anxiety I felt, doing an inventory in my mind regarding foods I ate or chemicals I may have touched in the past few days. Nothing seemed out of the ordinary. That night, I took a Benadryl and went to sleep, hoping the rash would improve by the morning.
I remember the following morning like it was yesterday.
I stood naked in front of the full-length mirror in the bathroom, my husband at my side. Hundreds of hives covered my body, ranging in size from a pea to a quarter. My body felt hot, as if it was on fire. I was terrified to shower, fearful that more hives would break out on my body.
Immediately, I searched for an allergist in my new town and told them it was an emergency. Grateful they could squeeze me in that afternoon, I counted down the minutes to the appointment. I noticed something interesting that day, luckily, and was able to share it with the allergist. When my skin was exposed to heat or cold, or I was moving briskly, such as swiftly going down our staircase, more hives would erupt. In addition, the hives would migrate around my body, erupting and disappearing every few hours.
In fact, the only thing that seemed to help the hives calm down was when I was calm, laying completely still in bed.
The allergist immediately diagnosed me with having an outbreak of urticaria. Unfamiliar with the term, she explained that urticaria can fall into two camps – acute and chronic. Acute episodes can last anywhere from a few hours or days, up to six weeks. When hives stick around for more than six weeks, they are considered chronic.
Because this was my first episode in my life where I was having more than a few random hives, we had no idea at first if the outbreak was acute or chronic in nature. And although I felt completely alone, it turns out I wasn’t.
Approximately 20 percent of the population will experience urticaria at some point in their lifetime, according to the American College of Allergy, Asthma and Immunology. The more I researched online, the more stories I found of people sharing how exercise, sweating, cold or hot temperatures, stress, and even food had triggered their urticaria outbreak.
This particular outbreak took away eight weeks of my life.
I was on high doses of antihistamines and steroids, both giving me terrible side effects because of the dosage. Even with those medications, I never had one day free from hives for two months. I was also given an Epi-pen in case my throat swelled, as the hives had moved up from my legs to my neck and face.
I felt like a prisoner, completely trapped in my own body. It forced me to take time off work and lie completely still in my bed for the majority of each day. As someone who already struggles with anxiety, it was difficult to see the physical ramifications of an illness on the outside of my body. With Lupus, and the way it affects me, the war rages on in the inside of my body and most people cannot tell I am sick by looking at me.
With a chronic urticaria outbreak, there was no way to hide it from the world. And so, I kept to myself, trying to meditate, pray, and keep calm – giving my body the rest and stillness it needed to heal.
As a Type-A personality, always on the go, being forced to stay bedbound for two months gave me a fresh perspective on many things.
First, upon thinking about the year prior to the outbreak, I realized I had pushed my body to the brink in terms of stressors – moving across the country, starting a stressful new job as a reporter, and creating a life in a new town. My body had given me plenty of signals that it wasn’t feeling well, but I ignored them and kept pressing on.
That time alone also brought my anxiety issues to the forefront. I lived in so much fear during that time, afraid the outbreak would last months or years (which is a possibility), or that my throat would swell closed while I was asleep (thankfully, this never happened). It also shed light on other fears and stressors of life that I was not addressing. Time alone spent thinking can teach one many lessons. And while it was a difficult eight weeks, it forced me to learn more about my body and commit to treating it with more respect.
Today, as soon as I see the signs of a potential urticaria outbreak – random itchiness on the body, hives appearing on a more regular basis, especially around times of stress – I reach out to my allergist immediately and we begin a small course of antihistamines and steroids.
Since that outbreak, I’ve taken up restorative yoga to help calm my nervous system and teach me how to focus on my breathing during stressful moments. I’ve also made a commitment to pay more attention to the signals my body gives me, and to not feel guilty when I say “no” to certain invitations.
Though living with both lupus and urticaria is tricky and frustrating, and I have to be on guard with my health on a daily basis, I’m grateful; these experiences have taught me crucial life lessons that can only be learned when you lose life’s most valuable commodity – your health.