Her pain is like a ‘blowtorch’: But Milford woman with rare disease redeeming cans, bottles in struggle for independence

MILFORD — Amanda Pitre, 30, lives with her parents and can only work part-time because she has an autoimmune disease that creates constant, burning pain as if a “blowtorch” was lit inside her.

But Pitre, 30, who was born weighing only 2 pounds, 2 ounces, has begun forging a path to independence and handicap accessibility in a creative way: By seeking donations of cans and bottles she can redeem.

She’s giving half of the proceeds of those she redeems to the Reflex Sympathetic Dystrophy Syndrome Association. The organization, headquartered in Milford, offers services and information for those with her condition, Complex Regional Pain Syndrome, or CPRS.

The other half of the money from redeemable items is going into a fund for to eventually enable Pitre to obtain housing with handicapped accessibility, as she said she knows she’ll never work full-time and be able to save for the future.

Her parents live in a small duplex, not easy to maneuver in with handicapped equipment she uses, and someday she could need a wheelchair and hence, a ramp. In the duplex, she has a chairlift to take her up the stairs.
“I don’t want to be a 40-year-old and still living at home,” Pitre said. “My dream is to have a house of my own without stairs, a handicapped-accessible bathroom, a custom-made ramp for when I can’t walk.”

Pain, 24/7
CRPS, also known as Reflex Sympathetic Dystrophy, is a chronic neuro-inflammatory disorder, classified as a rare disorder, although 200,000 people in this country experience the condition in any given year, according to the Reflex Sympathetic Dystrophy Syndrome Association website.

CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma, the organization’s website states. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale, the site states. Pitre said just the touch of a sock or other closing item can flare extreme pain.

Pitre started the call for collecting redeemable in November through her church, Mary Taylor Memorial United Methodist Church, but is unable because of the pain to walk around to collect the items. She then moved it to Facebook and is now putting the call out to the world: anyone who wishes to donate cans and bottles can simply leave them on the porch of her family’s home at 40 Earle St., Milford. Or her dad will drive her to make big pickups. She is not able

“I like returning them and seeing how much they add up in the end,” she said. She said it is a better way to ask for donations than asking for money, as many people are struggling. Since November, she’s raised $250.

Church friend Sheryl Hollyday, who has known Pitre since she was a child, has donated at least 10 large bags of cans and bottles so far. She said Pitre is an “amazing” woman for all she does for others, and kind, despite all her suffering in pain.

Striving to live independently is a “great goal” for Pitre, Hollyday said, and the can and bottle drive is a good start. Hollyday said she hates returning them, so she likes that the proceeds are going for a great cause: Pitre’s future and the organization that helps her.

“She’s always had health issues, but never let that stop her,” Hollyday said. “I’m amazed by what she does for other people.”

Pitre often asks for prayers at church and, “I can only imagine having prayers to get through the day,” Hollyday said.

A local organization
Jim Broatch, longtime executive director of the Reflex Sympathetic Dystrophy Syndrome Association, said he thinks Pitre’s can and bottle drive is a “great idea.” He said Pitre is a “sweet” woman who has been involved with the organization for many years.

“I think it’s wonderful that she wants to live independently,” Broatch said. “It’s difficult for people to get better and she has such a positive attitude and it’s wonderful.”

He said CRPS is the only condition with the word “complex” as the first word and it reflects how complicated the disorder can be, including psychologically, because of the 24/7 pain.

Of Pitre donating to the organization, Broatch said, “It’s wonderful she’s giving back,” and the first $250 donation will be put toward a camp in Kentucky the organization sponsors for people in pain – not just CRPS pain. Broatch said it’s a great camp with social events where campers meet others like themselves dealing with chronic pain.

Pitre, who takes 60 pills per day — none of them a narcotic — had a medically complex childhood because of being three months premature, and today suffers from a kidney condition with its cardiac complications, and controlled epilepsy in addition to the pain syndrome.

The CRPS struck at about age 16 and twice has left her unable to walk, but with continued physical therapy, her condition fluctuates. Right now Pitre is able to walk, but every movement is a struggle, as in her case the CRPS affects both legs to her toes, her entire back, her shoulders, and neck. She said she has a burning pain 24/7 that feels like a “blowtorch” running inside her.

Her parents, Pitre said, taught her to “do your best and don’t give up,” so she perseveres – but it’s a constant struggle. When she’s not at work, Pitre wears orthotic ankle braces and uses crutches, and on really bad days, a wheelchair.

“Everything I do is a struggle – getting out of bed, walking. I have days where I just cry and put my head down,” she said. “I don’t know how much more my body can handle. My mind isn’t tired of fighting, but my body is.”

A great job
Pitre took her parents’ guidance to heart and moves onward, working 20 hours per week at a special education school in North Haven as a one-on-one aide.

“I love it,” she said of the job. Being a former special education student herself with learning disabilities and overcoming obstacles to earn an associate degree from Gateway Community College in early childhood special education, Pitre revels in every student success – no matter how seemingly small.

“Getting to take care of kids when they need extra help and see them accomplish things is what I love. The littlest things – sitting in a chair, using a fork.”

As a child once diagnosed with a learning disability, attention deficit disorder, sensory processing disorder and executive functioning disorder, Pitre said she great empathy for the special education population and knows what it’s like to be put down by others. She attended Gateway on a full scholarship through the governor’s Coalition for People with Disabilities.

“Everything is an effort,” she said, noting her best friend lives in Ireland with the condition and gives her hope. Her cat, Monroe, 9, also helps Pitre get through it all — knowing just when a cuddle is needed.