‘My body doesn’t play by the rules’: For Bloomsday participant with mystery leg disease and an allergy to water, the race is a true lesson in perseverance

Rachael Fetter has participated in Bloomsday 17 times despite the fact that she hasn’t been able to feel her legs from the knee down for the last nine years. Six years ago, she also developed an allergy to water, making rainy Bloomsdays an even bigger challenge.

“My body doesn’t play by the rules,” she said.

Fetter, 28, started participating in Bloomsday in 2007 with her parents. When she grew up and left home, she kept right on going, only missing the occasional race.

“I just kept doing it,” she said.

The problems for the Rathdrum resident began in 2015, when she began losing motion and then feeling in her right foot. Eight months later, it started in her left foot. She was diagnosed with slow onset drop foot.

“I started tripping all over the place,” she said.

The loss of feeling advanced up to her knees in both legs, and doctors searched for a cause for the disease, which can sometimes result from a nerve injury or a neurological disorder.

“I’ve been to the Mayo Clinic twice,” she said. “They don’t know the full cause.”

Fetter was determined not to let her condition limit her. She used braces to help her walk and, when she lost mobility, electronic leg stimulators. She used the leg stimulators in several Bloomsdays.

“That technology, I pushed to the max,” she said.

People told Fetter she wouldn’t be able to continue doing Bloomsday with her condition, but Fetter was determined to prove them wrong.

“I just kept at it,” she said. “I did a lot of things they said I couldn’t do. I still rode and jumped my horse even though I had no feeling in my legs. You just have to find the right tools.”

She had a partial reversal of her condition six months ago.

Fetter works as a veterinary technician and was bitten by a dog at work. She was prescribed antibiotics and, after a few days, realized that the back pain that had been her constant companion for many years was gone.

She checked in with her doctors, who managed to find one research paper that indicated that drop foot could be related to an infection in the spine. After more antibiotics, Fetter regained the ability to walk on her own without braces or leg stimulators. She still has no sensation below the knee, but is able to walk slowly on her own.

Her doctors don’t know for sure and can’t prove it, but believe she contracted a spinal infection that led to her drop foot, she said. Fetter said she’s fine not knowing a definitive cause.

Fetter said she’s been without sensation so long that walking isn’t a problem.

“It’s been so many years now, I’m adapted to it,” she said.

But in 2019, things really got weird – Fetter began getting hives every time she took a shower.

At first, she thought she had developed an allergy to her soap or shampoo, but after two months it was clear that wasn’t the issue.

“The only time I got hives was when I got wet,” she said.

Local doctors were puzzled. They did skin biopsies, which just showed inflammation.

Then she was sent to the Mayo Clinic again, where she was diagnosed with aquagenic urticaria, an allergy to water. She takes cyclosporin daily to help ease her symptoms, but her disease has continued to advance.

Three years ago, she started getting blisters in her mouth when she drinks liquid.

“There’s only known to be 100 people in the world that have this disease,” she said. “No one knows why it happens.”

Fetter has good and bad days with her water allergy. Some days she can drink limited amounts of fluids without too much of a problem, but other days she can’t. She often has to get fluids through an IV in order to stay hydrated. She also avoids going outside when it rains.

Amy Bishop, who works with Fetter, said she didn’t realize that Fetter had serious health issues until the day her electronic leg stimulators didn’t charge and she came to work wearing leg braces. Fetter simply doesn’t focus on her limitations, Bishop said.

“She doesn’t want that to be who she is,” she said.

Bishop often has to remind Fetter to take breaks if she needs to, she said.

“She doesn’t want to bother anyone. She doesn’t complain. She just deals with it.”

Bishop said she is impressed by Fetter’s determination and resiliency.

“I don’t know how she does it,” she said. “It’s inspiring. I would not be as matter-of-fact and just chugging through life.”

Fetter, who is looking forward to her first Bloomsday in years without wearing electronic leg stimulators, said she hopes she can teach people not to accept no for an answer.

“People don’t think you can,” she said. “You can go do it. You can do anything. Don’t let people stop you.”

Fetter knows she won’t be finishing Bloomsday quickly, but that doesn’t matter.

“The atmosphere just makes Bloomsday so special,” she said. “It will be a trial. I will see how much my legs can do on my own. I’ve been working on it for months.”