Hello, my name is

Joshua Lynch

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Reborn in pain, living in hope

Amanda Rinkel keeps a box of her more than 20 daily medications under her bed. But some stay in her bedside stand for when the pain prohibits her from getting to the box. Photo by Joshua Lynch.

Amanda Rinkel keeps a box of her more than 20 daily medications under her bed. But some stay in her bedside stand for when the pain prohibits her from getting to the box. Photos by Joshua Lynch.

Seattle U student Amanda Rinkel conquers student life despite constant pain and fatigue

The mashed potatoes and biscuits look tiny at the center of her plate.

Amanda Rinkel picks at her food a little bit as family dinner starts Saturday in her Puyallup home. She doesn’t need to hurry-her mom, dad and brother have some catching up to do.

They have pasta, broccoli, salad and the same biscuits and mashed potatoes to finish. Not to mention one of Amanda’s dad Tom’s specialties, “beer-can chicken.”

Amanda, a creative writing major at Seattle University, sits quietly through most of the dinner conversation, her long dark-brown hair threatening to fall in her food as her head tilts down.

She’s tired, though it’s around 5 p.m. and she didn’t get out of bed until her cat, Truie, paid her a visit at 11.

Amanda’s limited diet and her exhaustion are just two challenges she faces daily, but her chronic pain tops the list. Today Amanda says it’s seven out of 10 on the pain scale, with 10 qualifying someone for a ride to the ER.

In fact, it would hurt if someone gave her a hug. Her family knows better than to give her a bear hug.

“Literally, if someone hugs me,” she says, “I might cry-and I have before.”

Amanda has chronic fatigue syndrome (CFS) and fibromyalgia, two complex and chronic illnesses doctors know little about. An estimated 10 million Americans have fibromyalgia, while 4 million are believed to have CFS. Symptoms and their severity vary-with Amanda on the wrong end of the spectrum.

“The nature of fibro,” Amanda says, “is that 20 different people will explain their pain in a different way.”

Amanda likens her pain to gasoline pouring through her veins. She says her headaches are like having something wrapped tightly around her head. Her bone pain is “deep and sharp” and is present most days of the week. Today it’s in her hips, and she moves gingerly because of it. The CFS makes her feel like she has been swimming with 20 pound weights, and sometimes her body is so heavy she can’t get up.

Her twin brother, Nick, doesn’t have either illness. But he chimes in to help her find words for her symptoms.

“I got four words to describe it: Pain in the butt,” he says, emphasizing each word.

Few people her age can understand a life plagued daily by debilitating joint and headache pain, fatigue and a host of other symptoms. But Amanda looks forward to graduating next year, at the age of 26, having experienced it every day since it suddenly began her senior year of high school.

A long road to answers

Amanda Rinkel & Family

Amanda's family thought she would never live on her own. Now in her final year at Seattle U, Amanda is looking to study far from home.

Amanda was born on Friday Jan., 13, 1984, which she considers to be lucky despite its superstitious implications. She was a gymnast until she was 14. Her neighbor, Tony Isaac, remembers her bouncing across the Rinkel’s front yard or coming up to the chain link fences to say hello.

Amanda steered away from athletics in high school, focusing on work at the Children’s World Learning Center teaching Spanish and extracurricular activities like being a student council representative. A skiing accident in 2001 required surgery on her knees, and just as she was getting ready to be active again, a horrible headache hit her. It didn’t get better.

It was Oct. 8, 2001. Amanda recalls the exact date without a problem, though the “brain fog” CFS and fibromyalgia patients have actually makes her forget her phone number sometimes. She began a long series of blood draws, MRIs, spinal taps and blood draws again. Doctors couldn’t seem to pinpoint what was ailing her.

“Every scary word you could think of, they say they’re going to test you for it,” Amanda says.

Meanwhile, Amanda stopped attending school, though her guidance counselor came up with a plan to help her graduate. She still made it to her senior prom and a brief senior trip to the Bahamas with friends.

But Amanda’s diagnoses were climbing into the double digits, and she was fainting often. Nick remembers picking her up off the floor at least 15 times.

“We didn’t know if she was going to wake up the next morning,” says Lisa Rinkel, Amanda’s mom. “It was horrible. It was living hell.”

Amanda had been planning on becoming a nursing student at Seattle University, where she had been accepted. After so many trips to the doctors, that career was becoming less and less appealing. And college was going to be impossible in her current state.

“It was a devastating time to be almost reborn,” Amanda says. “My plans weren’t my path any longer. I didn’t do a lot because I couldn’t. I was just living in my head. I call them my lost years.”

Amanda’s first solid diagnosis was that she had CFS, and by early 2003, more than a year after that horrible headache, Amanda was diagnosed with fibromyalgia, too. She was incredibly relieved by the diagnosis.

“She helped her doctors diagnose her with all of her research,” Lisa says, beaming with pride. “She sure did.”

But having a diagnosis was only part blessing. As Amanda explains, doctors don’t have real treatments or cures for fibromyalgia or CFS.

“They can just treat individual symptoms.”

Life after the ‘lost years’

I had to watch all of my friends go pursue their dreams while I was stuck in a body that wouldn’t let me do anything. – Amanda Rinkel

After finishing dinner with the family, Amanda admits she is really tired. She heads to her tiny room in the basement of the house and pulls a box out from under her bed.

Though it’s the size of shoebox, it’s Amanda’s pill box. After a minute or two of calculations, Amanda determines she takes 23 pills daily, excluding some pain pills she takes as needed. Some are supplements to bolster her meager diet, and Amanda says her favorites are the Flintstones chewable vitamins. On Friday, Amanda went to the store and spent $80 on supplements. It’s all part of the plan made by her team of seven regularly-visited doctors.

But Amanda developed other symptoms since 2001. Doctors believe a virus caused damage to her stomach, and she often couldn’t eat and other times would vomit. Since May, Amanda has been on a diet of food like mashed potatoes, bread, rice and juiced fruits and vegetables. She was feeling so ill, Amanda’s family considered a trip to the Mayo Clinic fall quarter. But after being prescribed another medication, Amanda is slowly adding more food she can eat-among the latest additions are applesauce and hummus.

Now Amanda is also planning on taking three classes next quarter. And she’s talking about graduate school-possibly in England.

Out of bed, into the classroom

After graduation from high school, Amanda took three years off from school. It was hard for someone who enjoys academics and learning.

“I had to watch all of my friends go pursue their dreams,” she says, “while I was stuck in a body that wouldn’t let me do anything.”

In May 2005, Amanda started taking classes at Pierce County’s Puyallup campus and earned her associate of arts degree. Six years after deciding where she would go to college, Amanda enrolled as a creative writing major at Seattle U.

She moved to an apartment four blocks away. But Amanda’s health was deteriorating, and the distance was far enough that she had to drive. Around campus, Amanda often could be seen with a cane to keep her steady.

She had her cat, Truie, to keep her company. Truie, a dark-furred, half-blind cat has severe health problems as well-the Rinkels got her from a rescue agency.

“That cat picked Amanda,” Lisa says.

In January 2008, Amanda’s stomach began bothering her. She eventually moved back to her parent’s house, and by fall quarter, she was taking independent studies.

Certainly if anyone ever had an excuse for slacking off someone with her illness could certainly do that. But she steps right up. – Prof. Sharon Cumberland

Amanda wrote about fiction and pain for an independent study with English professor Sharon Cumberland.

“Whenever you are writing fiction you are the god of your universe, and that really has the effect of distancing yourself from your own universe,” Cumberland says of Amanda’s work.

Despite her illness, Amanda maintains an almost perfect GPA at Seattle U. Cumberland says Amanda has all of the characteristics of a good student and the discipline of a great student.

“Certainly if anyone ever had an excuse for slacking off,” Cumberland says, “someone with her illness could certainly do that. But she steps right up.”

Now Amanda commutes by train to the university twice a week for class. She wants to attend graduate school to study modern day slavery and human trafficking. Amanda is looking at universities in England and Atlanta.

It’s a daunting distance from home. But Lisa and the rest of Amanda’s family have hope.

“I’m really excited,” Lisa says. “I think she’s the strongest person I know in my life. We never expected her to move though. We thought she would have to be living with us for the rest of her life.”

Sharing her story

Amanda Rinkel Fibromyalgia Awareness

Amanda Rinkel works on a campus-wide program to spread awareness of her chronic illnesses.

For now, Amanda is planning a fibromyalgia and CFS awareness event on campus. On May 12, she and members of the Office of Health and Wellness Promotion will table at C-Street about the illnesses.

Passersby will have the opportunity to get a sense of Amanda’s pain with the clothespin test. Participants put a clothespin on their pinky finger and see how long they can endure the pain. This is supposed to compare to the pain of fibromyalgia.

It will also be a campus-wide pajama day to raise awareness among the Seattle U community of the drowsiness caused by CFS.

“It’s not often an individual takes the initiative to plan a campus-wide program,” says Deb Hinchey, director of the Office of Wellness and Health Promotion at Seattle U. “Amanda is so impressive.”

With her legs pulled to her chest in an armchair at home, Amanda says the main purpose of the event is to raise awareness. But she doesn’t think anyone can understand unless they experience what she has.

Amanda explains the event is also a way to keep her motivated. Those with fibromyalgia and CFS often experience depression or anxiety disorders.

“I get up in the morning because I can’t wallow,” Amanda says, smiling. “I feel like I have a purpose then.”

She pauses and then adds, “The worst thing that happens is that I fail-but at least I tried.”