Fast forward to 2012. That spring I graduated college and headed right into summer work mode, something I was familiar with since a young age. Summer went by with no major issues that I can recall, the last one prior to Superstorm Sandy, so at this point in the year, things are still all good. Then came October 1, 2012, a date that has stuck with me almost 8 years later (and mind you my memory is actually quite terrible).
This is the date that I recall everything starting to fall apart. The night of September 30th, I was out to dinner with friends celebrating the end of the "work season" and I was all ready to leave for a trip to Disney the next morning. I came home eager to get to sleep, excited for vacation to start when I woke up. But only shortly after falling asleep, I woke up itchy. I had red bumps on my legs that were SO itchy and they wouldn't stop. I never in my life had an allergic reaction before (just some lactose intolerance that showed up late teens), and I had no idea what this was. After college I moved back in with my parents for a bit, so of course I went to ask my mom what was going on, because moms know everything. Assuming I was having an allergic reaction, I took some Benadryl and went back to bed, and hoped that everything would be fine by the morning and that it wouldn't be a bigger issue that disrupted my trip. I slept surprisingly well- I didn't know at the time Benadryl could make you so drowsy- and woke up, bump free, not itchy, and ready for vacation to start! Oh, how I wish I knew how things would change from that day on.
Throughout the Disney trip these hives made appearances daily, varying in what time they would show up, where they would show up, and how long they would last. I did my best not to let it ruin the trip completely, but I will say it was difficult to not be bothered, especially since it was a little nerve wracking not knowing what was even going on. As soon as I got home from Disney I tried oatmeal baths, cutting out all possible allergen foods, and lowering my stress-kind of difficult when you constantly feel like ripping your skin off. None of that worked so I saw an allergist specialist, one of the best in the area, that had a waiting list weeks long. Eventually I had my appointment and she ordered bloodwork for me. My test results showed no allergies. Now usually this would be a good thing, but in this case it left me with more questions than answers. Next, I went to a dermatologist. He looked everything over but could't determine a cause either. So I went to another allergist specialist, but again no answers.
Over the next 6+ months I would have hives every. single. day. Some days it was scattered about my body, some days I was covered head to toe. The itching was nothing that I had ever experienced before, and it was all I could do to stop myself from scratching my skin raw. I tried to continue living as though I was ok, but some days I just couldn't. I remember one night going to a concert and I had my boyfriend (now husband) stand behind me and hold my hands so that I couldn't scratch myself. And that's pretty much all I remember about that concert, because I was way too preoccupied with what was going on with my body to be paying attention to the band. There are many stories like this of me trying to go on with my life, only to be discouraged by the disruption of the hives, but I'll spare you the boring details of each one.
I was living in misery for months trying to find an answer and no doctor could give me any kind of guess as to what was going on. The doctors diagnosed me with idiopathic urticaria- which literally means “hives with no known cause”. I didn't need them to give me that diagnosis, I had already figured that much out on my own. The best (and only!) advice from the doctors I received was to take an over the counter allergy medicine and hope that helps the symptoms and one day *hopefully* the hives will go away on their own. Yes, they all told me this was just going to continue until it stopped and there was nothing more they could do for me.
I was itchy, unhappy, and tired of feeling this way at age 25, so I dove into my own research. I googled for hours, days, and months just looking for some kind answer, and finally I found something that seemed to match what I was going through. It was called histamine intolerance and as I asked each of my doctors about it during my follow up appointments, they all dismissed me, saying there was no such thing. The more I researched on my own the more dots I was able to connect-pun intended :) So I decided to do my own trial, which was more than the nothing the doctors gave me. I cut foods that are high in histamines out of my diet and I started taking a natural supplement that contained the DAO enzyme, something your body naturally produces. The job of DAO enzyme is to get rid of excess histamines in your body, and if you don't produce enough of this enzyme, your body will become overwhelmed with histamines which can cause a variety of symptoms including hives.
I stuck with the diet and supplement for a few months, figuring it wasn't doing any harm to try it, plus I was determined to make the hives stop and get my life back. Lo and behold, a few months later the hives stopped! I was even able to stop taking the supplement all together and reintroduce the high histamine foods without any relapse. I kept up with my doctor appointments during this trial and every single one of them told me I was wrong, that there was no such thing as a histamine intolerance, and that I just needed to wait for them to go away. Within 2-3 months of my trial I was hive free and although the doctors were happy I was feeling better they STILL did not believe in histamine intolerance. If that wasn't enough proof for them, I don't know what would be. They didn't even try to learn more about it or ask any questions, or do any of their own research. Needless to say I never went back to any of those doctors and I've been better off for it. This was the first time in my life that I realized doctors may not be as all-knowing as I had always believed.
Some of you (especially locals) will remember October 2012 as the month that changed everything because of Superstorm Sandy. I remember October 2012 as the month that my life changed forever for another reason. It started with the mystery of hives and catapulted me into a world I knew nothing about but was soon to become my everyday life. The world of constant doctor visits, prescription medications, hospital trips, pain and misery. I had no idea that the hives were only the beginning of what would become a seven year battle.