Health Female Adda
1 year ago
Living with MS

Okay, it's time now," drawls Cherise Cameron while reaching inside her refrigerator. Cameron, her cheeks a seashell pink, her big hazel eyes wide and bright and smiling, doesn't look sick or act it. Indeed, she seems extraordinarily fit and healthy. And cheerful. No one could guess that the white box hidden behind the milk contains the medication that may — or may not — prevent her from becoming a complete invalid one day. Or that the 34-year-old Atlanta native wakes up every morning wondering what will happen to her if the medicine doesn't work and she ends up in a wheelchair, blind, or unable to think as clearly as she does today. But Cameron is tough and buoyant. And she tries to overcome her fear with the same iron will she harnesses to defeat the disease, multiple sclerosis, that 5 years ago turned her life upside down.

Syringe in hand, she sits atop a wooden kitchen stool, lifts her lavender miniskirt, and aims an inch-long needle into her upper thigh. "Okay, okay, you can do this," she pants, her breath growing more shallow, her calm veneer melting in the Atlanta heat. "God, I hate this," she says, her entire body shaking, the needle finally breaking the skin and diving down deep into her quadriceps, where the medicine is released.

Within an hour Cameron's head pounds "like there's an ice pick inside of it." Later, her legs and back begin to ache, and she grows nauseated — all side effects that are as much a part of her treatment as the medication itself. Regardless, Cameron continues the conversation as though she's completely fine. She walks Rose, her Irish setter, in the late morning drizzle. She talks animatedly through a lunch of shrimp risotto while staying in touch with her office through her BlackBerry. "As bad as I can feel sometimes, I try as hard as I can not to let MS interrupt my life," she says.

Cameron endures this ordeal once a week when she injects herself with Avonex, one of a handful of FDA-approved medications that clinical trials show can — but don't always — slow the progression of MS's debilitating symptoms and reduce the incidence of relapse. No one knows how it works. What is known is that it can cause severe liver damage, lower the body's ability to battle infection, incite seizures, and lead to congestive heart failure. "I don't know which is worse," Cameron ponders, "my MS or the medicine I have to take that may or may not make it better."

Cameron is not the only woman facing this dilemma, of course. According to the National MS Society, 400,000 Americans now suffer from multiple sclerosis, with 10,000 new cases diagnosed each year. For reasons researchers are only beginning to understand, MS, a degenerative autoimmune disease that attacks the central nervous system, is at least twice as common in women as in men, and 90 percent of those it afflicts for the first time are under the age of 50. Even more frightening, it strikes suddenly and, with no cure, often leaves its victims physically, mentally, and emotionally devastated. "It totally sucks," Cameron says, her eyes welling with tears, a smile still on her lips.

Just 5 years ago Cameron was 29 and living almost a clich of the perfect life. She was married to her college sweetheart, living in a nice house, working hard at a good job, and hanging out regularly with friends. A self-described type A personality, Cameron often lived a full week in a single day, working full time, earning her MBA in the evenings, and yet always finding time for a round or two of golf. Both Cameron and her husband were ambitious, driven people who worked long hours, and, after a while, their marriage started to wilt from lack of attention and broken communication. But as she would with any other problem, Cameron tackled her marital troubles head on and brought her husband into couples counseling. "I fully expected everything to work out and that one day we would have the white picket fence and 2.5 kids," she says. "Failure simply wasn't something I ever considered."

That is, until her body failed her. Every hour in the United States, someone is diagnosed with MS. For Cameron that hour arrived late in the afternoon of September 23, 2000, a day after she awoke to play golf with some coworkers but instead got out of bed and collapsed to the floor, her left side paralyzed. Sensation returned within a few minutes, and she figured she'd pinched a nerve in kickboxing class the night before. But when her left side again went numb the next day, she says, "I thought I was having a stroke." An MRI revealed something else: seven lesions on her cerebral hemisphere, some that indicated the disease had been there — but asymptomatic — for several years, and some that were new and causing her central nervous system to backfire. When the on-call neurologist at the Northside Hospital emergency room delivered the news to her and her husband, Cameron remembers, "My head spun around my neck like a cartoon character, and the blood completely drained from my face."

She didn't even know what multiple sclerosis was and confused it with muscular dystrophy, a degenerative disease of the skeletal muscles. "I really had no idea what was wrong with me," she says. "I only knew that it couldn't be good."

MS causes the body's immune system to attack myelin, the protective insulation surrounding the nerve fibers of the central nervous system, and replaces it with hard "sclerotic" tissue — those lesions in Cameron's brain. Sometimes it attacks the nerves themselves, causing paralysis, blindness, and cognitive impairment. Like heart disease or diabetes, it's an illness that doctors seek to control rather than to cure. And its symptoms are as individual as the person who has them; some feel strange sensations in their limbs, others don't feel their limbs at all. Some feel debilitating pain, others don't even know they have the disease — it all depends on where in the brain or along the spine the MS chooses to strike. And the truly weird thing is that symptoms can last a day, a week, a month, or years, and then as though by a miracle, disappear only to return weeks or months or years later. "It's crazy-making," Cameron says. "When I wake up I just don't know what my day will bring. I might feel fine, but an hour later I might not feel my leg."

But for Cameron and many other victims, the impact of the disease stretches far beyond the physical. Four months after she was diagnosed, her husband announced he was leaving her. Her disease, she says tearfully, finished them off. "I got very dark," she says, "and I couldn't focus on fixing our marriage when I was trying to understand who I was with MS." Her faith in God slipping away, Cameron stopped going to church. "My parents were like, 'Where is the sweet little Christian girl we raised?' I told them, 'She died when I got MS.'"

And then in a way she was reborn. "I got to the point where I just didn't want to feel bad anymore," Cameron says. "I was so tired of scanning my body for symptoms and living in fear of relapses that I decided to start enjoying myself more." Cameron even started making a "party" of her weekly Avonex shots; every Sunday night she'd play tennis with her friends, who would give her the shot, then take her out for Mexican food and margaritas. "I knew I'd be sick the whole next day anyway, so why not have a little fun?"

It's not that Cameron ignores her symptoms; she just tries to keep them in perspective. And she knows what will aggravate them. That's why she limits her outdoor sports in the summertime — heat fatigues her to the extreme — and plans evenings out only when she knows she has an easy day at the office (though she still works 50 to 60 hours a week). "I have a limited amount of energy, and I am learning how to expend it efficiently," she says.

Like many with MS, Cameron lives by a 24-hour rule. When she experiences a new numbness, weakness, or extreme fatigue, she waits it out for a day or so. If the feelings remain, she knows she may be relapsing, and calls her doctor. That happened in November 2001, when her right side showed signs of paralysis while she was at work. "I couldn't hold a cup of coffee with one hand," she says. "And I couldn't write; my fingers simply wouldn't move the pen around."

A relapse was confirmed, and Cameron underwent a 3-day regimen of intensive IV steroids — the same treatment she had in the hospital after her initial diagnosis. Just as before, the steroids caused her to grow bloated, irritable, and anxious. Relapses are so fear-inducing because, while patients generally recuperate, the recovery is rarely complete. "My penmanship still isn't what it used to be," says Cameron, who used to do calligraphy as a hobby.

Cameron is a director of strategic planning for Bell South, the perfect job for her Control Everything Before It Happens personality. Her disease is the one thing in her life that she can't dominate, but, boy, does she try. After reading an article about how mercury might exacerbate MS, she had her dentist replace all of her silver fillings with porcelain. And she's changed her meat- and cheese- loving diet to all things organic — fruits, grains, and vegetables grown without pesticides, and hormone-free meat (when she eats it at all). "In a way I've never been healthier in my life," she says.

That said, barely a day will pass without an uninvited appearance of one of MS's telltale symptoms, such as a sudden numbness in her leg that makes her trip, or the need to go to the toilet but the inability to urinate. "It can just take a while before my brain responds to what my body tells it to do."

In some ways Cameron is fortunate. Lesions haven't yet formed lower in her brain or along her spine, which could further compromise her ability to function below the waist. And since the disease's degenerative pattern can generally be predicted within the first 5 to 10 years of diagnosis, she has reason to hope that she won't get much worse. "She's in an ideal position to do very well," says William Stuart, M.D., director of the MS Center of Atlanta and Cameron's doctor. "We caught the disease in its first episode, which we aren't always able to do with MS patients, and the medication appears to be successful in staving off further damage."

Still, the existing damage to Cameron's brain is permanent, and she will always suffer from symptoms of the disease.

After her marriage ended, one of Cameron's biggest fears was that she would have to face the future by herself. "Who was going to want someone with this disease, someone who might only have a few good years left?" she remembers thinking.

But along came Brent Mlott, 40, a handsome Bell South coworker who had known of Cameron's illness since shortly after it was diagnosed. When they began dating 3 years ago, Cameron resisted complaining about her symptoms for fear Mlott would see her as a negative person. But it was her very ability to overcome the daily fallout of her disease — the fact that she showed up to work early in the morning, stayed until late at night, took on every project offered to her, and laughed her way through her fear and vulnerability — that attracted him to her in the first place. Not only did he want to hear about her anguish, he wanted to help her through it. "If it was going to be a part of her life, it was going to be a part of mine," he says.

He hasn't always found that easy. For every night she has the energy to go to dinner with friends or walk hand in hand with him through an art museum, there's another night when she's just too exhausted to socialize. And even though they love traveling together, planning vacations around her weekly injections can be problematic because the medication always needs to be refrigerated, and so they can't travel too far for too long.

And yet, Cameron is so active and energetic that Mlott often forgets about her MS entirely. On a recent vacation to a Tennessee horse farm, the two were jogging together when Cameron suddenly eased her pace. "I ran back and jogged circles around her and teased her for slowing down until I noticed that her left leg was dragging a bit and she was having some symptoms," he says.

Still, Mlott admits that he fears seeing Cameron decline, a feeling exacer-bated by his mother's stroke several years ago, which left her unable to walk, talk, or care for herself in any meaningful way. "My father worked his whole life, raised two sons, put them through college, and in his retirement has to care for my mother 24/7," he says. "I didn't want that for my life." Mlott's periodic visits to his parents in Charleston, South Carolina, aggravated his fears. "I would have proposed to Cameron 6 months earlier if not for the internal struggle I was battling."

But whenever he returned to Atlanta, seeing her smiling face erased all his fears. "I got to the point where I didn't want to miss out on 20 or 30 great years because of what may or may not happen to her," he says.

Finally, Mlott proposed, and the two will wed in February. Because both were married before, it will be a very small wedding. Indeed, it will be just the two of them in some faraway exotic locale yet to be decided upon. "I want our wedding to set the stage for the kind of adventures we hope to have for the rest of our lives together," Cameron says.

And if Cameron does end up in a wheelchair some day, Mlott says, "I'll be there to push it."

What You Can Do About It

The National MS Society is the world's largest private sponsor of multiple sclerosis research, spending $35 million per year on attempts to find the cause of the disease, better treatments, and a cure. You can raise awareness of MS by wearing one of its "Hope" wristbands, or support its efforts directly by becoming a member. But there are other, more active ways you can help.

Walk, ride, or hike. The society sponsors three different types of fund-raising events that anyone can get involved in: the MS Walk, the MS Bike Tour, and the MS Challenge Walk (a 3-day, 50-mile trek). To find an event near you or to learn how you can sponsor a participant in an event if you can't take part yourself, go to nationalmssociety.org.

Sell stuff on eBay. You can now sell items on eBay and have from 10 percent to 100 percent of the proceeds go to the National MS Society. Go to givingworks.ebay.com for details.

Become an advocate. The MS Action Network lobbies local, state, and federal government officials on issues affecting people with MS. One of the most pressing matters currently is the Respite Care Act, a bill introduced in Congress with bipartisan support that would provide relief for caregivers of people with MS. Go to National MS Society.
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