CEDAR SPRINGS, Mich. — Stacie Carr is a paraprofessional at a Cedar Springs Elementary School, a swim instructor and a mom to two children.
She is also living every day in constant pain.
"The pain is insane," said Carr, "It’s rated as the most painful condition. It’s called the suicide disease because most people will commit suicide over not having correct treatment."
Carr was diagnosed with complex regional pain syndrome (CRPS) after a traumatic fall 17 years ago. She lost her leg after multiple surgeries and treatments. CRPS is a severely disabling condition. Carr describes it as "your pain signals never shut off."
"CRPS is a burning cactus," said Carr, "It’s a constant blowtorch, pins and needles. Pain so bad I’ve passed out, thrown up."
Last year, she had a spinal chord stimulator put in her spine, which helps block the pain receptors in her brain. She still says the pain is at a "constant level of 7 or more" in her leg.
As a painful reminder of what she has lost, the pain is the strongest where her prosthetic leg fits to her body.
However, she learned of a surgery that could help fix a lot of her pain. Osseointegration would make a "custom made porous titanium implant they would put in my tibia."
To Carr, that surgery would mean everything.
"Just be able to walk in to, walk out the door every day and not have to think, do I need my fanny pack?" said Carr, "Do I have enough supplies? Do I have the lotion I need? Do I have the socks that I need to make it fit right at the end of the day? Can I make it through the end of the day? I love work. I love to work with kids. But there isn't a day right now that goes by where I don't have to take a leg break, take it off and just sit and rest and hope for the best."
She found a surgeon to do the Osseointegration for her specific needs in New York. She said there are not many surgeons doing her specific type of surgery in the United States.
The surgery alone costs more than $30,000. That does not factor in travel and other expenses.
Friends of Carr set up a GoFundMe to help raise money for her surgery. You can donate by visiting this website.
Carr is motivated to be "the active mom." She said she "refuses to let this be as good as it's going to get."
"I want to be able to run and keep up when they're biking," said Carr, "I want to go to their sporting events without having to think and pack a bag. I want to be able to do the camping and the hiking and all the fun stuff in the summer."
She had a reminder to everyone not every illness is visible. You cannot see Carr's pain, but she is fighting it every day.
"The invisible part of illness is real and a little bit of grace and kindness goes a long way," said Carr.
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