One member collects Scripture and inspirational text, writing them on cards she can read when such messages are needed.
Another member warms her hands in a paraffin dip to ease her arthritis as she begins her day.
Welcome to a meeting of the Chronic Pain/Illness Support Group at St. Mark’s United Methodist Church.
There are about 20 members of the support group, but seven people have come to this meeting.
All of the members at this meeting are a part of the church, but that isn’t always the case. Membership in the support group is open to anyone who has chronic pain or a chronic illness.
This is a safe place to share frustrations, worries and fears, as well as ways of coping with illness and pain that’s chronic.
The group does outreach projects so its members aren’t isolated in their illnesses. One such project involves making greeting cards for the holidays or “just because” for people who are homebound.
They have also gone to other churches to train lay ministers so that they know the best ways to talk with and help church members they visit at their own congregations.
They listen to each other, offer support and exchange tips for managing time and energy.
But they don’t compare their pain.
Patricia Falcon, a Tucson health psychologist who treats patients with major medical issues, says support groups are beneficial for people with physical or mental issues. It helps erase feeling isolated by illness.
Good support groups are places to learn strategies for coping, new treatment options and a place to gain a sense of control. The most successful groups have an educational component to them, Falcon said.
Volunteering also is important, she said.
“The effect of helping other people with kindness and volunteering gives people a nice dose of good self-worth. Despite illness, they are capable of helping and being there emotionally for someone else,” Falcon said.
Even with a small group meeting this day, the sharing of stories isn’t complete before someone mentions April DuBoce, the group’s founder. Normally she would be running this meeting, but on this day DuBoce is in the hospital.
“She’s like a DieHard battery. She just keeps going,” group member Cliff Nystrom says of DuBoce.
April DuBoce removes her everyday walking prosthetic before trying on a new blade prosthetic leg at the Hanger Clinic. DuBoce recieved the blade through a grant so she could run.
“I just wanted to help others”
DuBoce, 49, founded the support group because she understands chronic pain.
Seven years ago, her right leg was amputated above the knee, two years after knee surgery.
At home, DuBoce had more pain than was expected. Her surgeon said DuBoce’s symptoms were psychosomatic. She had been diagnosed previously with PTSD and took antidepressants. The doctor told DuBoce the pain was all in her head.
She tried to see other doctors, but they all told her to go back to her surgeon. One physician told her, “Grow up, get over your mental illness and be productive in society. You’re not in pain.”
After 2½ years and two suicide attempts, DuBoce finally got a diagnosis from another doctor: Reflex Sympathetic Dystrophy syndrome (RSD).
With RSD, the sympathetic nervous system gets mixed signals and causes blood vessels to get smaller to reduce blood flow to an injury site. Normally the blood vessels would expand again when the injury crisis is over, but with RSD, they do not, and blood flow is restricted. While not very common, RSD often follows a surgery or traumatic injury.
The diagnosis was too late to save DuBoce’s leg.
People will ask why she didn’t sue for malpractice, but the statute of limitations for a malpractice lawsuit in Arizona is two years, which had passed before she was diagnosed.
“When I found out my leg was going to be amputated,” says DuBoce, “I just wanted to help others and I didn’t know how that was going to take shape back then. It’s taken shape in the form of the (support) group.”
April DuBoce has shirts with such messages as: “It’s taking a lot longer for my leg to grow back than I thought it would.”
Wanting to be physically active
DuBoce has been an athlete for much of her life, playing football in junior high school and softball from high school into adulthood. Soccer, which she played for 35 years, was her passion. “I could kick with both legs, but my right leg was my power. It demonstrated my strength. I helped me let go of stress, anger and hurt inside and it powered me. So now I’m finding different ways.”
After her amputation, her athleticism worked in her favor. She found ways to be up and about within days of her amputation.
However, her health has not been so cooperative.
Several illnesses unrelated to her amputation or RSD have caused her to lose weight, which recently meant she needed a new socket and liners for her prosthesis.
At the Hanger Clinic in September, seven years since her amputation, Jeff White, a prosthetic specialist, and Justin Rheault, a resident at the clinic, adjusted her regular prosthesis, noting a sore spot on what’s left of her leg.
Her prosthetic leg has microprocessors in the foot and knee. DuBoce and White believe she was the first in Tucson to receive the Ottobock Meridium foot. It is flexible enough that she could wear heels or flip-flops. There is differentiation between the big “toe” and the others. The foot handles inclines and rough terrain better than previous models and will lock so that one may stand on an incline.
DuBoce wanted the ability to run. She applied for and recently received a grant to get a blade for running, but she has not had the opportunity to become comfortable with it. She learned how to attach it and walk on it at the Hanger Clinic when she had her regular prosthetic leg adjusted.
A week later she planned to do a short run in the Phoenix area. She did some preliminary events but went to the hospital because of an illness, one of several hospital stays that month.
She hopes she will be able to run in the future, but her RSD has now spread to her left leg, causing more pain.
Her vascular surgeon has told her there is nothing more he can do. “When you hear those words, it’s a gut punch,” DuBoce said.
She may lose her other leg.
So she does what she can to manage her pain and copes by using humor. She has T-shirts with such messages as: “Keep calm and put your leg on” and “It’s taking a lot longer for my leg to grow back than I thought it would.”
Her best friend, Shannon, limps because she has a bad knee. However, when she’s walking with DuBoce, she will not walk behind her even a step or two. She doesn’t want people to think she’s making fun of DuBoce’s gait. They have joked about it for some time.
DuBoce says, “For this amputee you can joke, laugh, make fun, poke it with a stick. I don’t care. I don’t mind sticking out if it helps other people.”
A person in DuBoce’s situation doesn’t have to give up her athleticism, says Peter T. Hughes, director of adaptive athletics at the University of Arizona.
April DuBoce walks cases of jewlery out to her car for a Origami Owl Jewlery pop-up sale at a nearby retirement center in Oro Valley, on Nov. 19, 2019.
Hughes says there’s always a way to continue to be active regardless of disability. There may be some adaptation, but an athlete can still be involved in competitive sports. Wheelchair basketball is an example most people have heard about, but there are others.
The Adaptive Resource Center has a gym with equipment that can be used even by those who aren’t UA students or staff members. There are various membership plans.
Similarly, the UA and Southern Arizona Adaptive Sports provide opportunities for sports and other physical activity.
Sports at SAAS include wheelchair basketball, adaptive cycling, wheelchair softball and wheelchair tennis, says Mia Hansen, its president and program manager. The groups works to remove barriers to participation in any activity. There is even the possibility of adding rock climbing, if there’s enough funding.
The group also encourages volunteerism and provides opportunities that will raise funds for the nonprofit organization.
DuBoce’s goals include educating children so they aren’t afraid of seeing a person with a prosthetic limb. And if she could help coach a children’s soccer team, she would be happy.
She would like to see more doctors listen carefully to their patients instead of making assumptions based on previous diagnoses, and to help end shaming of people who have lost a limb.
Also, DuBoce would like to find a support group for non-veterans who have had amputations. While she is immensely grateful for the sacrifices veterans have made to keep our country safe, she doesn’t want to compare her stories to theirs.
Will DuBoce ever run? “I’d like to think that nothing is out of the realm of possibility for me,” she said. “My mentor of 17 years, who recently passed away, always told me: ‘Everything’s going to be OK, we just don’t know what OK looks like yet.’ That’s how I try to look at things.”
A favorite Scripture of hers is Hebrews 12:1, which ends with “Run with perseverance the race that is set before you.” She has a tattoo of the line on her left ankle.
But she doesn’t need the tattoo to remember its meaning.
DuBoce perseveres — and concentrates on helping the members of the support group to do the same.
April DuBoce tries on a new blade prosthetic at the Hanger Clinic at 4920 E. Speedway Tuesday morning, Sept. 17, 2019. DuBoce recieved the blade through a grant so she could run.