On a good day Erica Carter will walk the dogs and tackle something on her to-do list. The dishes, maybe. A trip to the grocery store.
She’ll take one of her grandmothers to lunch. She’ll visit family. She’ll spend time with her nieces and nephews.
“A good day is when I wake up and I don’t feel that horrible,” Carter said.
Problem is Carter can’t predict the good days. They don’t happen very often.
Carter has fibromyalgia. She suffers from chronic pain in her muscles. She is constantly fatigued. She has trouble sleeping.
Hugs can hurt.
Carter also has Sjogren’s Syndrome, an autoimmune disease that leaves her mouth so dry she sometimes slurs her words. She carries a bottle of water everywhere.
Carter is 29. It has been 10 years since she went to bed without a heating pad for her back.
“It’s really frustrating,” she said. “I’ve spent lots of days in the past 10 years lying in bed.”
Fibromyalgia and Sjogren’s Syndrome are two of the more than 100 forms of arthritis that afflict 46 million Americans, including 300,000 children, according to the Arthritis Foundation. It is the leading cause of disability in the United States.
More than six million men, women and children suffer from fibromyalgia.
There is no cure for any of them. Only medicine to manage the pain.
Carter sees Dr. Daniel Small, a leading rheumatologist with offices in Bradenton and Sarasota.
“I’m lucky to have him,” Carter said. “He’s up on the latest medications. He always tells me, ‘Don’t worry. They’re going to make something newer and better.’ ”
May is National Arthritis Awareness Month.
The Arthritis Foundation Florida Chapter in Bradenton is holding a silent auction tonight at Cork’s Cigar Bar on Old Main Street in Bradenton and a 5K fun run and walk Thursday night in downtown Bradenton.
Money raised from those events will go toward the research that will help develop newer and better medication Dr. Small has promised.
“People hear arthritis and think it’s an old person’s disease,” said Diana Hirshberg, community development specialist for the Arthritis Foundation Florida Chapter. “People think it’s something you get from doing the same motion over and over, year after year. It’s that and so much more.”
Hirshberg is all too familiar with the “so much more.” Her daughter is Erica Carter.
“She was 18 and her life was taking off,” Hirshberg said. “She was graduating high school. She was engaged. She had plans. And then it all stopped.”
When it all started
Carter developed pain in her back during her senior year at Manatee High. It took three years of visiting various doctors who offered various opinions before Hirshberg found Dr. Small, who determined her daughter was suffering from fibromyalgia and Sjogren’s Syndrome.
“It was a relief to finally know what I had and that it wasn’t all in my head,” Carter said.
By then Carter was married to Christopher. She had a degree from Manatee Community College. She wanted to be a legal assistant.
She and Christopher dreamed of starting a family.
Carter worked as a legal assistant for a few years. But there were too many days when the pain kept her in bed, and the stress eventually became too much.
She quit and took a job at Burdines, but the constant standing was too much.
She worked for a time at a booth at a flea market.
“I tried all sorts of things,” Carter said. “It’s frustrating. I cry a lot, because I feel so defeated. My 30th birthday is coming up, and I’m really disappointed in myself because I haven’t accomplished a thing.”
Carter hates that she can’t keep a job. She hates that she can’t keep her house tidy on a daily basis.
“Some days I pity myself,” Carter said. “And other days I say, ‘Get over it.’ This is something I have to deal with, keep charging through.”
It’s Christopher who puts together her to-do list and assigns a daily task, something as simple as making a phone call, in order to give his wife incentive to get out of bed.
“Her husband is a saint,” Hirshberg said.
Erica sometimes wonders why Christopher is still around. Neither knew her condition would be this bad when they were first married.
“There’s a lot of people who thought our marriage wouldn’t last because this would break us,” Christopher Carter said. “Just because Erica is sick, I’m not going to walk away from her. I’m very religious, and if I did that, in my eyes, that would make me a very bad person.”
So they soldier on . . . together.
“It’s never going to go away,” Christopher said. “We can look at it two ways: you’re sick and you’re not going to feel better; or today you don’t feel OK, but tomorrow you might feel better, and if you do, we will push it. We’ll push life to the fullest.”
Christopher’s mother, Barbara, lives with them in their Bradenton home. She encourages Erica to paint with water colors, to do embroidery and quilting.
Carter has worked on a small baby’s quilt for the past two years.
“I’m getting close to being done,” she said.
‘Always has a smile’
Carter politely declined to have her picture taken for this story. Most of her childhood friends are not aware of her illness.
“She always has a smile on her face,” Hirshberg said. “Know one ever knows what kind of pain she’s in. When she is in pain, she stays home. You don’t see her. She doesn’t want to bring people down.”
There is also this: Carter’s illness has changed her physical appearance.
“When I was younger, I was a skinny-mini,” she said. “A size four. Barely there.”
But years of inactivity and years of medication have led to a significant weight gain.
“I’m twice the person I used to be,” Carter said.
The Carters celebrate their 10th wedding anniversary May 22. They hope to go to Cozumel.
But it is tough to plan ahead.
On the bad days, Carter remains in bed.
“My comfort zone is my bedroom,” Carter said. “The tiredness and total exhaustion bothers me the most. The tiredness is a pain in the butt.”
Carter has her hobbies to keep her busy on those days.
She works crossword puzzles to help clear the fog the medicine produces in her head.
She reads a lot. She just finished the “Twilight” series for a second time.
Carter likes to read books that make her think. Her favorite is “The Precious Present,” by Spencer Johnson. “The ‘precious present’ is the present time,” Carter said. “It’s about enjoying now and not to be worried about the future or the past.”
Sort of like the philosophy Carter has been forced to adopt these past 10 years.
“I guess,” she said. “I try to make the most of now.”