'You can't stop living:' Rider with scleroderma bikes RAGBRAI with help of oxygen tanks

RED OAK — Today was a TOUGH day.

That's how Barb Heenan described Day 1 of RAGBRAI . But the 53-year-old from Des Moines was ready to get back on the bike for Day 2 of the Register's Annual Great Bicycle Ride Across Iowa, hoping to add another one on the books.

For Heenan, being part of the longstanding multi-day bike ride is ever-present on her bucket list — one, she said, she wants to tackle as long as her body can handle it. Heenan was first diagnosed with limited systemic scleroderma at 22 years old, her body changing drastically as the rare autoimmune disease impacted her blood vessels, then later digestive system and her internal organs.

Within the first 10 years of her diagnosis, Heenan said she dealt with Raynaud's phenomenon, a condition that causes decreased blood flow to various areas of the body. The condition triggered by cold temperatures or stress causes ears, toes or fingers to feel numb. Heenan said she lost feeling in her fingers, and the blood vessel restrictions forced a few of them to go through "self-amputation." That means, they got shorter and shorter, she said.

"When you lose circulation, your body does not like that," she told the Des Moines Register. "So, you end up losing tissue and your tissue ulcers, and then self-amputate."

Heenan, whose first RAGBRAI was in 2017, said her reason for signing up came down to this: "I knew that my lungs were deteriorating. I wanted to do it."

"Now's the time," she thought then, "because there might not be tomorrow."

More: Get a piece of Hollywood on RAGBRAI as the route passes through these Iowa movie towns

After that, she and her family and closest friends were hooked. So, they came back again, and again, and again to join in on the fun. Together, Heenan and her team are known as "Bubba's Blowhards." Laughing, Heenan explained that those near and dear to her know her as "Bubba."

In order to complete the ride, Heenan needs support from her right-hand companions: her loved ones and her oxygen tanks. On Saturday, as Heenan and her team made their way to Glenwood, she told the Des Moines Register they loaded 43 oxygen tanks into their RV. One oxygen tank lasts Heenan about an hour, or 10 miles.

Heenan, who is riding to bring attention to the disease that has changed her life, said she will know on July 31 if she is eligible for a double-lung transplant at the University of Iowa Health Care in Iowa City — which, according to its website, has the only lung transplant team in the state.

Just days before this RAGBRAI began, Heenan had been updating her Facebook page with photos as they prepared for the next "BIG adventure." She has so far continued documenting her ride, snapping more team pictures with new faces of riders they have met on the way — her team growing bigger and bigger with every mile.

"Life can be very hard, and you can't stop living," she said. "You have to continue living no matter how hard it is and whatever struggles you have to go through to make it work. That's what you do."

F. Amanda Tugade covers social justice issues for the Des Moines Register. Email her at ftugade@dmreg.com or follow her on Twitter @writefelissa .

This article originally appeared on Des Moines Register: 'You can't stop living:' Rider with scleroderma bikes RAGBRAI with help of oxygen tanks