Fibromyalgia Aware Mag. Dec ’04

Fibromyalgia Aware mag. Dec ’04
Written by Elisabeth Deffner

Four years ago, when she discovered she had received a grant from the California Council of Arts to teach music to underprivileged children, Rosalie Hamlin, now 59, had just returned to her New Mexico home after a long stay in California. So she packed everything she had just unpacked and headed back to the Golden State, settling in a small San Diego County town not far from where she grew up.

Excited as she was about the program, she could not shake the exhaustion that had latched onto her during the move. Her back, shoulders and neck were especially tender – perhaps, she thought, she had pulled a muscle while packing. Or maybe she had the flu. She went to a chiropractor, Dr Tortora, recommended by her aunt Rachael Ortiz. But no matter what he did, her back only worsened. And the pain was starting to spread. “One day he said to me, ‘Have you ever heard of fibromyalgia?’” Hamlin recalls. “I said no.” But as Hamlin – the lead singer of Rosie and the Originals, the band that recorded her composition “Angel Baby” in 1960 – discovered, fibromyalgia was precisely the cause of her exhaustion and pain.

“Angel Baby”
When Hamlin was just 13, she auditioned for a band by singing “Dark Moon” over the phone, telling them she was 16. She performed several times with them at the Bostonia Ballroom on the outskirts of San Diego. “At the end of the evening, somebody from the band would pass the hat around, and they would give me whatever was in the hat. I remember having $20, $30 sometimes,” she says with a chuckle. “I didn’t even want to tell my mother where this money was coming from. I told her I had a babysitting job.”

Two years later a friend of Hamlin’s uncle introduced her to some young local musicians: guitarist Noah Tafolla, drummer Carl Von Goodat, and bandleader David Ponci and Tony Gomez. They rehearsed in the Hamlin family garage and got a few gigs. More importantly, Hamlin showed the band a song she had written. During the summer of 1960, amid the scattered parts in an old airplane hanger, they recorded “Angel Baby” – with Rosie singing and playing the piano.

“Angel Baby” became a hit, but by the end of the summer the band had already foundered. At 16, Hamlin moved on, marring 19-year-old guitarist Tafolla. They had two children, but divorced after three years of marriage. Three years later, she married again, and gave birth to her third child.

Hamlin continued to sing and became the first Latino to be honored by the Rock ‘n’ Roll Hall of Fame in the one hit wonders section. Her resume is filled with concerts across the country, some of them benefits, like fund-raisers to get Ritchie Valens a star on the Hollywood Walk of Fame, and performances from remote concerts for the Jerry Lewis Telethon. Volunteer work has always been important to Rosie. Her musical talents allowed her to raise funds and awareness for the causes closes to her heart: Latino causes and benefits for the underprivileged, especially children.

“I’ve always been extremely energetic and very, very busy,” she explains. “It’s taken me a couple of years now to have to deal with fibromyalgia, and have to re-think my life, re-organize, and realize – just having to realize that I’m so limited now. I don’t like it, but I have to deal with it.”

Breaking Free of the Cycle of Pain
Hamlin has come a long way from the 15-year-old girl who sang a song about her secret crush, creating a smash hit. She has also come a long way from the bewildered woman who had never heard of fibromyalgia. Now, once again living in a small town in New Mexico, Hamlin is struggling to navigate the rocky road of the social security disability process. Currently her music and tax attorney is working with the IRS, since a New York organization has allegedly been collecting royalties for a number of artists, including Hamlin. Its misuse of Hamlin’s tax identification number has made it appear as though she earned more money than she actually did. This is delaying the process of her disability case for several yrs now.

This is not the first time Hamlin has dealt with such shenanigans. As a young singing sensation, she encountered one record label representative who took advantage of the band’s naivety. The result? Another band member was designated the songwriter of “Angel Baby,” and Rosie and the Originals handed over the master recording without first signing a contract. In the end, Hamlin’s persistence got a judge to give her the legal entitlement of author to her song, and she eventually managed to claim royalties for the song she wrote. Now she is hoping the IRS will complete the investigation of this organization so that her New Mexico disability attorney can complete her case.

In the meantime, she is exploring therapy options that will help her to manage her symptoms, which have expanded far beyond back pain. While still trying to run the grant-funded program, she began experiencing severe disorientation. She had trouble remembering things. Noises sounded horrifically loud, lights blazed incredibly bright. Then her pains spread to her face and head. More than just an ache, this pain caused the left side of her face to go numb, and then to burn. “I felt I was having a neurological problem, and I was afraid,” says Hamlin. “For the first year I thought I had a tumor and everyone was ignoring me.”

Eventually she had to train someone else to run her program for underprivileged children, which is still going strong. Ironically she lost her health insurance, because she couldn’t work as her condition continued to deteriorate. No other choice but to go back to her home in New Mexico. There she found a doctor who was treating other people with FM, and who understood the constant chronic pain and exhaustion. She worked with me for a long time trying different meds because not everything works for everybody. That was an important step – but Hamlin still had to determine which therapies would help her manage her symptoms. And she did lots of research to develop an understanding of what was wrong with her.

“I was alone in my place, and I was having all sorts of depression, mainly because I didn’t really know what was wrong with me. I thought maybe it was more than what they said,” Hamlin recalls. “I just couldn’t get it in my head that you could hurt so badly in one area, and then three or four hours later hurt someplace else. That’s what made me really think I was losing my mind.”

Because her memory problems were increasing, she had a difficult time communicating – even with the people who cared about her, including her three children: John, Deborah, and Joey. Her isolation increased, as did her feelings of depression.

“I spent six months to a year of pacing at night, and just crying because of the extreme burning,” she says. “The burning was so bad that I put my arm in the freezer, and I’d do that for 15, 20 minutes. Then I’d grab a bag of ice, put it on my head, on my face, on my hip, on my legs – wherever the pain moved to would just be such extreme burning. The concentration was equally as bad. I was afraid to talk to anybody on the phone. I couldn’t carry on a coherent conversation a lot of the time, and that made me emotionally frustrated, to know what I was trying to say but the thoughts and words got lost between the brain and my mouth.

On top of everything, Hamlin was having money trouble. Her doctor had prescribed Oxycontin for her pain. Before long, it was costing her about $500 a month. “I used up all of my savings. I tried to do concerts whenever I could,” she says. “At first I could fake it, and people didn’t know I was sick.”

But a steady concert schedule drained her. When she was not on the road, it took all of her energy simply to take a shower and collapse in bed. Her weakened immune system made her susceptible to every cold that went around. The colds rapidly evolved into severe sinus infections and then pneumonia. Her doctor warned her repeatedly until finally Hamlin had to agree that one concert every other month was as much as she could handle. Sometimes even that kept her bedfast for weeks.

“She was getting really bad,” recalls Barbara Davidson, the wife of Hamlin’s manager Gene Davidson, who also has FM, has known Hamlin about 30 years. “It got so bad she quit doing her gigs. She turned down a lot of them and I know she needed the money, but she couldn’t do it.” Hamlin is not a quitter, though. She sought a way out of this vicious cycle, and continues working her way free.

A Light in the Darkness
Hamlin discovered that the maker of Oxycontin offers a patient assistance program, for which she qualified. They send her medicine free every month. She pays for her other prescriptions – Lexapro and Zelnorm for the irritable bowel syndrome she developed recently, and Amitriptyline so she can sleep even when she is in pain.

MusiCares, a foundation that offers help to musicians in need, recently made four of her house payments for her – enough, she hopes, to carry her through this time of tight finances to the time when she is on disability and can breathe a little easier. Singer Al Wilson, a longtime friend of Hamlin’s whose wife also has FM, is organizing a benefit concert that will provide some assistance. He hopes the concert will not only provide some much-needed assistance to his friend of 30 years, but will also inform the public about fibromyalgia. “It’s something very hard and difficult to understand,” he explains.

But financial troubles are nothing compared to the anxiety Hamlin suffered in the early days of her diagnosis. “It’s very hard to put into words the horror that I went through for about two and a half years. I didn’t understand what was going on with me. No matter what I read or was told, there just didn’t seem to be enough information out there. Finally I became aware of Fibromyalgia AWARE. Two years ago [a friend] sent me the magazine, which she’d picked up at Cedars Sinai Medical Center. I became aware of all the research going on, how many people actually have it, and I didn’t feel as alone in this situation.”

She is still unsure what might have triggered the FM. She wonders if it could have been the shock of her mother’s death or learning that a business partner had funneled thousands of dollars out of her business, the strain of caring for her father when he was dying of cancer, then her Mother died, or the struggle to heal after a spider bite caused an infection that lasted eight months.

Whatever the cause, Hamlin is still seeking ways of managing the resulting symptoms. Massage, acupuncture, water exercises, diet, and vitamin regimes have all proven helpful – for a time. But one thing has never let her down. “My son bought me one of those bath-jets,” she says. “When I get in there in the warm, warm, warm water, and I lay there for half an hour to 45 minutes, I feel like Jell-O, like my muscles have relaxed – especially in the winter, when I have a lot of problems. It helps considerably.”

Instead of a rigorous concert schedule, Hamlin is using her talents to create oil paintings that she sells on her website: along with her CD’s. In March, she will have an art show at a Southern California gallery.

And she shares her experiences with others in the hope of helping them. “The pain that I experienced is worse than breaking a leg or childbirth.” Hamlin says simply, “I never knew there could be pain so intense and ongoing. I hope that my story will help other people that have it seek better treatment if they need it,” she says. “I hope it will also help other people come out of the closet, so to speak, and seek help.”