The Nugget Newspaper - News and Opinion from Sisters, Oregon

Tracy Lynn Lisius (Hendrickson) is a Sisters resident, a mom, and — before her health declined — an employee with the U.S. Forest Service. She’s an example of what can happen when medical issues deplete and eventually decimate savings.

Before her health worsened, she was living a full life.

“I was trying to be my most healthy self, keeping fit and active. I worked full-time on fire incidents in Central Oregon,” she said.

Now using a power chair and special upright walker, she only leaves home for doctor’s appointments. Her life has changed in many ways, but her attitude remains positive.

“I still enjoy leaving my sparkle of hope with people. I like to smile a lot,” she said from the home she shares with her son and service dog, Lulu.

Tracy Lynn has Ehlers-Danlos Syndrome (EDS), as well as a condition called dysautonomia. Because EDS is rare and has a complicated set of possible symptoms, she was misdiagnosed for most of her life. EDS is a syndrome often referred to as rare connective tissue disorder. Once she understood her symptoms and began working with a team of doctors who understood her unique and rare medical condition, she found more strength to advocate for herself.

“EDS is a nebulous and complicated condition,” she said. “Because of the dysregulated emotional component, it’s often misdiagnosed or dismissed as anxiety; instead of seeing the correlation with symptoms of blood pressure, heart rate, gastrointestinal, insomnia, lack of ability to eat, and brain fog.”

Adding to her current health situation, she got COVID-19 in early 2020. Already compromised, having PTSD and COVID made her situation worse.

Being her own best advocate, Tracy Lynn made some hard decisions about who to have in her life. As sad as it was, she chose to end her marriage. With all the challenges she’s facing, she continues to focus on gratitude and life’s blessings. These days, it’s not always easy. But she tries anyway. Even when she’s in obvious emotional and physical pain, her smile can light up the darkest moments.

With disability benefits and other financial support still in limbo, concerns about her health are compounded by running out of money. That means her living situation, medical costs, and paying bills for she and her son, who has autism, is a challenge each month. Debbie Dyer of Ponderosa Properties helped her find a safe place to live in Sisters. Her landlord has been working with her, along with many other individuals and organizations, to get her rent paid. Those kind acts keep her going.

She’s working with several legal and medical professionals to access funds and health care, but in the meantime, she’s had to rely on the generosity of neighbors, the Sisters community, and family.

Uncomfortable with asking for help, Tracy Lynn has learned to receive love in many forms from people she sees as angels in her life. Her friend and former Forest Service coworker, Kristin McBride, set up a GoFundMe campaign last September. Tracy Lynn is grateful to everyone who donated, but donations haven’t reached what’s needed. Her GoFundMe is focused on alleviating her medical debt so she can focus on her health and not outstanding bills she can’t pay. To contribute, visit https://www.gofundme.com/f/help-tracy-alleviate-debt-and-focus-on-health.

Tracy Lynn has a saying: “When you see people without a smile give them yours.”

She knows everyone’s suffering in their own way.

“If we connect with kindness, little things can become so big. Positivity is infectious. I keep building my faith and the power of prayer. I pray for everything now. I keep faith… not just in God but my community, too,” she said.

Wendy Bachmeier is another of Tracy Lynn’s angels. Bachmeier is a member of the Sisters Community Church and is working hard to get Tracy Lynn the help she needs. The church provided some support, but when those funds were utilized, Bachmeier recruited other parishioners, who have been providing resources through a Blessing Box set up on Tracy Lynn’s porch. Each time there’s something new in the box, Tracy Lynn remembers she’s not alone and people care.

“I never thought I’d be in this situation. I want to turn it into hope for others and myself,” she said. “The kindness of people I’ve never seen in my whole life has blown me away. I share my story and the miracles I’ve experienced with people I come in contact with whenever I can.”

Circumstances like complications from having COVID-19, her doctor retiring, and cancelled physical therapy due to pandemic restrictions have made her circumstances worse. She can’t get the Watsu water therapy her body needs to keep her joints mobilized because of the pandemic.

Through all the obstacles, Tracy Lynn keeps focused on the many people who are helping her along.

“I have a counselor, Vicki Boudinot, of Deschutes Behavioral Health. She saved my life because she believed in me. Over the years, I told her I knew something was still wrong. She encouraged me to find other doctors who would believe me. She rescued me and helped me get out of an unsafe living situation, then put together a team to check on me.”

Tracy Lynn understands there are many people in medical crisis who lack resources and can fall through the cracks.

“I was worried all the time I’d wake up in one of those tents along the highway,” she said. “If it wasn’t for Vicki I would have been there. She’s put together such an amazing team for me. I’m not confident about dealing with legal decisions and I can no longer work… It was scary leaving the job I love.”

One way she can give back is by encouraging people experiencing a health crisis to just hang on. “Keep going; it’s worth it,” she said. “Focus on nature and the little things, like butterflies landing on the wall; don’t focus on the storms because they pass! I really love people. There’s healing power in this area, the people, and the mountains.”

Sharing her story is both an opportunity to create awareness for her needs and express thankfulness for what she’s received. She doesn’t want to lose sight of the blessings she has in her life.

Tracy Lynn has created greeting cards available for purchase.photo provided

“It took 50 years to finally get diagnosed,” she said. “I was born with this. I went through a lot of misdiagnoses, and incorrect treatments, which created a challenging path to find answers. Now I want to help others.”

With help from Bachmeier and ladies from her church, Tracy Lynn is making beautiful, handmade greeting cards. They are for sale, including Mother’s Day cards, at Sisters Floral (243 N. Elm St.), Gypsy Junk (141 W. Main Ave.), and in Bend at Healing Bridge Physical Therapy through another one of Tracy Lynn’s angels, Allison Suran (354 NE Greenwood Ave. Ste. #105). To purchase cards directly, email Tracy Lynn at: [email protected]

Tracy Lynn continues to rely on faith, choosing hope, and sharing her philosophy whenever she can: “Miracles are everywhere! You can’t be grateful and sad at the same time.”