By Brenna Wiegand
Always a “super busy, high energy person” who never got sick, Kimberli Freilinger was baffled when, in graduate school, “things started cropping up.”
“I’d kind of almost fall every once in awhile and I thought that was kind of odd,” the Silverton native said. “I thought it was because I was working on my degree and my internship and trying to be the perfect parent.”
Three years after graduation things took a turn for the worse. Kimberli and husband Shawn Freilinger had two little boys. She taught at George Fox University and ran a private counseling practice. Symptoms began to pile up – migraine headaches and severe nerve and muscle pain.
“I started scheduling clients so I could nap between appointments,” she said, “but I had to quit all that in 2006 when it really slammed me.”
More restive than restful, Freilinger embarked upon an exhaustive, lengthy, expensive and confusing period of being tested “for almost anything.”
“I cried every time I left OHSU (Oregon Health Sciences University) because there still weren’t any answers,” she said.
Finally, she was seen by a doctor there who usually works with athletes. He found she was producing an inordinate amount of lactic acid and ammonia – strong indicators of mitochondrial disease.
“I found out it was a bigger deal than I thought,” she said.
Mitochondrial disease is inherited and causes debilitating physical, developmental and mental disabilities. About 1 in 2,000 people have it; it’s progressive and has no cure.
In keeping with the Kimberli who taught herself to surf 10 years ago just to shake things up, when plagued with depression and body image issues a couple years ago, started entering beauty pageants – with “mito” as her platform.
“…it was a nice distraction and I’m a girly girl,” she said.
Chronic Illness Support Group
A support group at 1 p.m. the first Saturday
of the month at River Valley Fellowship
in Independence. Information:
[email protected].
She met success at the local, then state level and at a national competition was awarded “Best Community Service” and “Best Cause.”
In 2013, Freilinger was named Mrs. Oregon Plus America. She relished her platform to spread awareness, but it was a “wild ride” that took its toll.
“It was so fun; I was on this high,” she said, “but it nearly did me in.”
When she “crashes,” Freilinger said it’s like a ton of bricks have been laid on her; she’s unable to think straight.
“For my journey I can pray for healing, and God’s answer may be yes, no or wait,” she said. “But I know he uses everything for good; I have an ability to connect with people with chronic diseases that I never had before.”
She leads a support group for people with chronic illness. She only knows of about 12 adults in Oregon diagnosed with mito, but says anybody suffering from a chronic condition or illness has the same questions.
‘How does this impact my career, my relationships and my finances? How do I deal with feeling useless and lonely? What’s my new identity? Why are my friends going away,” she said.
“I’m married and have two kids and I can still get lonely,” Freilinger said. “I’m extremely outgoing and extroverted – being around other people is almost necessary for my soul to survive. There’s a big dissonance between what I want and what I can do.”
Freilinger says mysterious conditions like mitochondrial disease, which takes many forms and can’t be positively diagnosed, call for a strong dose of self advocacy, learning to listen to your body – and developing an appetite for research.
“If you want to deal with it you learn how to have a voice,” Freilinger said. “I just kept pushing.”
A hallmark of mitochondrial disease is chronic fatigue and muscle pain accompanied by the malfunctioning of three or more body systems – “such as neurological, digestive and maybe diabetes.”
This often means chasing around to specialists who may treat each malady independent of the others.
“It’s really hard to find good care for mito patients,” Freilinger said. “I do pretty much my own research and have great rapport with my GP… I started finding things that really helped, like IV fluids once a week.”
It’s been nine years and Kimberli’s sons Camden, 15, and Kyler, 18, can’t remember their mom any other way.
“We’ve taught them all about what it is and they just know I get tired sometimes and there’s nothing I can do about it,” she said. “They’ve all taken it on without question; I’m pretty blessed that way. Shawn is busy running the family and working – he comes home and still works hard … he carries more than his fair share of the load.”
Freilinger, 42, bounces from good day to bad day while managing a part-time professorship at Western Oregon University and being Oregon’s United Mitochondrial Disease Foundation Ambassador.
“We lobby in DC and it’s starting to catch people’s attention; money’s starting to come. The thing that is really healing for me is getting into that advocacy zone.
“There’s a drug that’s in Phase II for one strain – not the one I have – but it’s the only drug trial going on right now and it’s still years from hitting the market,” she said.
“There’s also research going on at OHSU about third party mitochondrial donors; a parent with mito could give birth to a child with healthy mitochondria – it’s pretty exciting. I’ve been in touch with the research team; it’s a good long term approach to stop it in its tracks.”
Thankful for her faith, her family and her tendency toward optimism and humor, Freilinger wants to do more and realizes she can’t by herself.
“I want to do fundraising but I’m exhausted and so are the others,” she said. “We need people who are willing to help with the organizing, donations, venues, etc.
“On a more personal level, if you know somebody with a chronic illness; if you feel like you want to care for a friend, don’t ask if you can do something, just do something – send a card; bring a frozen dinner. Little things are as important as big ones.”
She’s learning to take each day as it comes – “there’s not much else I can do” – and to give herself grace.
“My motto is either laugh or cry,” she said, “and most days I laugh.”
She signs her e-mails with “God is good, all the time.”
