When everyone thought I was crazy

In late summer of 2006, I started exhibiting some strange symptoms. Everyone I knew thought it was in my head, but I knew it wasn’t. So let’s go back to that fateful day, in mid-August, when I was at one of my favorite places– Disney World. 

It was the first day of our trip, Mom, my daughter and me, and we were staying at the Boardwalk. We had just arrived and unpacked, and needed some downtime in the pool before dinner in Epcot. About five minutes into our swim session, my arms and legs started to itch like crazy. So bad that I couldn’t stop scratching them. But there was no rash, no physical signs of irritation. Just this feeling that tiny bugs were crawling up and down my extremities and biting. Surely it was a reaction to some chemical in the pool. So Mom sent me to buy Benadryl from the general store.

 She warned me, “Only take one.” 

Dripping wet, I made my way back to the pool, package in hand and reading the directions that said to take two. What does Mom know? So I popped two of them and waited about 20 minutes to re-enter the pool. Reaction was gone. After our swim, we showered and dressed and got on the ferry to Epcot, where I started to feel drowsy. Uh oh. 

In the Mexican pavilion, where it was super dark and relaxing, I held my menu in one hand and rested my head on my other fist. And started to nod. I tried to rouse myself enough to order and did, and that’s when Mom put her hand on my arm and said, “It’s okay, put your head down.” 

I did, and fell asleep until the food arrived. I felt terrible for ignoring her advice, but the itch was so bad! 

During the rest of the trip, I had issues in the pool and shower, and figured it was something in the water. 

WRONG. 

When I returned home, the problem was still there. It was intermittent and unpredicatable. I went to dermatologists. They found nothing. I had to plan out when I could shower by taking Benadryl an hour ahead of time. It was starting to run and ruin my life. And the Benadryl didn’t always work! I would sometimes itch myself raw after a shower. And everyone thought it was in my head. 

Nearly three years of doctors visits, Benadryl, and suffering later, I had an answer. I had been doing internet research for some time with no luck, until I came upon a Yahoo group for people with a condition called Aquagenic Pruritus. Going through the posts I read about other people with similar experiences as me and felt vindicated. Finally, a label. 

I did more research, printed my findings and took it to the dermatologist. She said she had never encountered a patient with it before, as it’s pretty rare, but it would explain my symptoms. She suggested I increase my vitamin D intake and come for lightbox (UVB) treatments a few times a week. At $30 copay a visit, I couldn’t afford that. So, I sat outside a lot, soaking up the sun. 

Over time, and with the help of the Internet group’s suggestions, I began to manage it better. I realized if I shower in morning it’s much worse than night, and I couldn’t shave in the morning either. So I showered exclusively at night. Another thing was that I had to dry off as fast as possible and dress head to toe in medium to heavyweight clothes (so much fun in summer). But these steps helped alleviate or avoid it completely. The symptoms became less of a problem, and are even sporadic now. And I still get a lot of sunshine. 

But having gone through this made me think back to that episode of the Golden Girls when Dorothy suffers from chronic fatigue and no one believed her. It was hard on her, and hard on me, to prove that there really was something wrong. So maybe the next time someone you know says there’s something wrong with them, even if they can’t prove it, maybe, just maybe you should believe them. It will certainly do wonders for their mental health. 

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