Next specialist appointment for local girl in May
THORBURN – February has been a month of missed school, nausea, stomach pain, and the inability to get out of bed for Chelsey Livingstone-Rector.
© AMANDA JESS - THE NEWS
Chelsey Livingstone-Rector continues to battle Lyme disease, but is focusing on being positive and has another specialist appointment in New York in May.
It’s not new for the Grade 8 student living with Lyme disease, nor does it affect her spirit.
“It’s normal for her – for us, we’d probably feel pretty crappy,” Angela Livingstone-Rector, Chelsey’s mother, says.
Although the winter has been a bad time, with Chelsey missing almost the entire month, they have plenty to look forward to, the month of May in particular.
They’re heading back to New York for another appointment with specialist Dr. McShane, a former Lyme patient and Canadian.
They last met with McShane in June, and have since been doing teleconferences with her every 12 weeks.
“She’s nice,” Chelsey says about McShane.
McShane talks directly to Chelsey and asks about her symptoms, Angela says, which she appreciates.
“She really knows what she’s talking about,” Angela says.
Chelsey recently changed medications. She was having trouble eating and drinking due to ulcers in her month from something she was on.
Angela says they’re hoping to see her continue with treatment or try something new.
Their best experience was with a portacath, a device installed beneath the skin through which drugs can be injected or blood samples can be drawn, until it got infected.
She has good days and bad days. She was able to go to school on Friday, and had a sleepover Friday night.
When she does go to school, she says they’ve been working on a lot of projects and speeches.
She’s not able to participate fully in gym class, but she’s working on building up her muscle tone by doing light yoga and walking.
At home, she spends a lot of time reading on her iPad. Right now, her book of choice is The Fault In Our Stars by John Green.
“I already read it, but it’s so good I’m reading it again,” Chelsey says.
To raise money for Chelsey’s trips to specialists, there are a few events also coming up in May that the family is looking forward to.
For the third year, Two Face Tattoos in Stellarton will be holding a tattoo-a-thon with the proceeds going to the Livingstone family.
Each year, Chelsey picks out the tattoos that George Smith will be inking onto people’s bodies.
Her choice for 2014 is a horseshoe and a four-leaf clover.
“Maybe this will be our lucky year,” Angela says about the choices, hoping that they’ll find a treatment plan that put Chelsey’s symptoms to rest, or better yet, a cure.
Angela says last year there was a long list of people who had to be turned away as Smith can only do so many tattoos in the span of 12 hours.
To allow more fundraising, Smith is running the tattoo-a-thon for two days, May 2 and 3.
It’s a fundraiser that holds special meaning for the family.
Six of Angela’s nine tattoos are from the choices Chelsey has made for the tattoo-a-thon.
Angela and her husband are customers of Smith’s, and he took upon himself to start holding the event as a family friend.
She says he doesn’t ask for anything in return, not even the cost of ink.
“George will continue (doing the fundraiser) until she’s better or doesn’t need the money anymore,” said Angela.
Last time, Chelsey was in the hospital, but this time they’re hoping to be there to participate.
The one-day event last year raised more than $1,800.
They also still have a bank account set up at Scotiabank for donations, and Bill Stewart’s is still taking bottles for Chelsey. Stewart’s is holding a bottle drive on May 3.
It will cost the family between $4,000 and $5,000 to go to New York for the Chelsey’s appointment.
Their teleconference sessions cost $340.
When they’re able to get a hold on Chelsey’s symptoms, including her latest which involves twitching similar to someone with Tourette’s, Angela wants to get herself tested for Lyme disease and her nine-year-old son Mitchell.
“She’s the priority,” Angela says about Chelsey.
Angela was told a spider in New Brunswick bit her when she was 16, but started questioning whether it wasn’t a tick a few years ago.
She had had a bulls-eye rash around the bite, and has had a number of stomach and thyroid issues, migraines, and joint pain.
Mitchell was really sick as an infant. Neither one have been able to get a solid diagnosis for their issues.
Basic testing is $700 a piece.
Chelsey’s diagnosis came after Angela met Brenda Sterling-Goodwin, a New Glasgow woman that was misdiagnosed for many years.
Sterling-Goodwin convinced her to go see naturopath Lisa McNiven while they were struggling to figure out what Chelsey’s symptoms meant.
“If it wasn’t for Brenda, Chelsey still wouldn’t be diagnosed,” Angela says. “We were destined to meet each other.”
Sterling-Goodwin and the Livingstone family are both hoping to see Bill C-442, a bill promoted by Green Party Leader Elizabeth May that would push ministers and the medical community to come up with a strategy for timely diagnosis and treatment, make it through Parliament.
“This is something she didn’t have to take on. It’s amazing to me,” Angela said. “I think Elizabeth (May) is finally going to push this through.”
On Twitter: @NGNewsAmanda