From the Archives: Fall 2009 issue of Lupus Now
Become Your Own Insurance Policy: 6 Ways To Ensure A Better Life With Lupus
by Mary Dixon Lebeau
Jennifer MacLean felt a rush of emotions when she learned she had lupus in April 2008, after at least 10 years of seeking a diagnosis.
“I was horrified,” recalls MacLean, 42, an operating nurse from Sparta, NJ. “I was shaking in my car. So many people had dropped the ball; I felt very angry.”
Once the anger and surprise passed, however, MacLean realized she had to take steps to continue leading her life. “I had to rally, and I had to work,” she says. Her first thought was on preserving her financial stability.
“I remember thinking I needed to get disability insurance because if I couldn’t work, I would be lost financially,” MacLean says. She applied for various policies, only to be denied at every turn.
“I was told they didn’t want my money. I had lupus, and no one wanted to insure me.” But instead of giving up, MacLean decided to be proactive about her situation.
“I knew I had to do whatever was necessary to stay as healthy as possible,” she says. “I needed to be my own insurance policy.”
Many people with lupus find themselves in similar circumstances. Living with a chronic disease presents numerous challenges, including financial difficulties, physical stresses, and emotional adjustments. It’s vital to be, as MacLean says, your own “insurance policy,” learning how to help yourself deal with the challenges you will face.
Take these steps to begin ensuring a better life while facing the challenges of lupus:
1. Pace Yourself
In a society that places value on an overloaded schedule, a person with lupus needs to listen to her body and pace herself accordingly. MacLean suggests setting priorities and sticking to them. “For me, the most important thing during the workweek is my job,” she says. “My family is my priority, but I have to work, so during the week I concentrate on that, and my husband handles the kids. I even nap after work before getting ready for the evening.”
Karstyn Mack, 42, a Colorado mother of two who was diagnosed with lupus almost 11 years ago, acknowledges she has good days and bad days, and she adjusts her routine accordingly.
“Sometimes I wake up in the morning knowing it will be a bad day,” she says. “If I feel stiffer than usual, I’ll stay in bed a little longer and take an anti-inflammatory right away to give myself a head start. On days like that, I pace myself and put off the big chores, like grocery shopping or laundry.”
Napping whenever possible also helps set the pace -- and allows you to rest up for the activities that mean the most to you. If you know a big event is coming up, rest beforehand, Mack suggests. “I used to blame myself for being tired or not feeling well. Now I’m more verbal in requesting peace and quiet when I need it. Still, there are times when I will choose to do something fun, knowing I’ll pay for it later,” she says.
D.A. McKinney, 56, of Canton, GA, agrees that following your body’s signals works best. Diagnosed more than 20 years ago, McKinney lives with lupus, as well as other autoimmune diseases and connective tissue illnesses. “I had to set my priorities, which include stopping and resting,” she says. “I put myself first. If I’m not here, my family does not function well.”
The best advice is to let your body be the guide. Listen to the clues it gives you, and respect that it needs rest, exercise, and proper nutrition to continue to perform at its best. Don’t be afraid to identify what you need and ask for help.
2. Order Medications Online
When McKinney was first diagnosed in the 1980s, she had little choice but to write her own reminders and fill her prescriptions at the pharmacy on a regular basis. With the help of technology, she’s finding this process easier -- and cheaper.
“I get my medications through Your-RX, which was offered through my husband’s insurance,” she says. “The ordering system is online. They deal with generic medications, and I love the price.”
McKinney really likes the email reminders she receives before she needs to reorder. “I get a message 10 days ahead, which is really helpful,” she says.
Other insurance companies offer online plans or mail-order prescriptions, often at a reduced rate. Some online pharmacies, such as Caremark (caremark.com), Walgreens (Walgreens.com), and Express Scripts (express-scripts.com), offer online prescription management while protecting your privacy. If you prefer a traditional option, Wal-Mart offers $4 prescriptions for 30 days of generic medication.
3. Seek Financial Help
In addition to the physical and emotional demands, the financial burden faced by people with lupus can be overwhelming. When she was unable to work anymore, Mack and her family lost their home in 2005. “Our credit was mangled. We went through our savings in no time flat, and our vehicle was repossessed,” Mack recalls. “We just couldn’t cut it anymore.”
Following her doctor’s advice, Mack filed for Social Security disability, only to be denied benefits. Although she later learned that most Social Security disability cases are denied at first to defer fraudulent claims, Mack accepted the decision. In 2006, overwhelmed with financial difficulties, Mack found a lawyer/advocate on the Lupus Foundation of America (LFA) Web site who helped her with her claim, and she was finally approved for Social Security disability in 2008. “That was a blessing,” Mack says. “The money is helping. It’s taking us a while to dig out financially, but we’re on the right track now.”
Even though she is still working, MacLean experienced similar financial concerns. She faced a pile of bills after surgeries and was denied private insurance. As a nurse, MacLean advises that the best tactic is to be honest with the doctor. “You can probably negotiate if you’re honest. Let the doctor know what you need and what you can afford,” she suggests, adding that some facilities are willing to accept less money than they might have otherwise charged.
For McKinney, whose last major illness left her with $1 million in medical bills, the key to getting financial help is dealing exclusively with management. “You’ll get faster results that way. When you’re dealing with a chronic disease, you have to cut through the red tape any way you can.”
The bottom line: Don’t be afraid to ask for help. And if you’re told no, it doesn’t hurt to ask again, this time going to someone higher up.
4. Find a Patient Advocate
A person with lupus needs to be proactive, but sometimes it’s hard to know where to start. That’s where the LFA health educators come in. For help with your individual health-related questions, contact them via email at email@example.com or leave a message on one of the toll-free information lines. For English, call 800-558-0121. For Spanish, call 800-682-7990.
But that’s not all. The LFA health educators also have links to national resources and assistance programs. One of the most popular of these organizations is the Patient Advocate Foundation (PAF).
“We’re experienced in working on behalf of our clients to help them in any way they need,” says Jacqueline Beard, a senior case manager with PAF, a national nonprofit organization that helps those with chronic diseases, including lupus, get access to appropriate care, maintain employment, and remain financially stable.
Organizations such as PAF will match a case manager with the client based on the challenges the client is facing. A case manager can guide you through the application process for disability or inform you of your rights concerning employment, the Family and Medical Leave Act, and the Americans with Disabilities Act, or help you get the care you need even when the insurance company doesn’t cover it or initially turns you down.
An advocate can even negotiate with utility companies and landlords if you are in financial trouble. “We make the calls with our clients to find out what is going on and how we can best address their needs,” Beard explains.
PAF, in Newport News, VA, served more than 48,000 people last year -- and it’s just one of the organizations dedicated to this cause. If you’re looking for an advocate, ask your local chapter of the LFA or your doctor for a recommendation, or do a Google search for “patient advocates.” To speak to a PAF case manager, call 800-532-5274 or go to patientadvocate.org. The foundation is funded by grants and private donations, with no cost to the people using its services.
5. Join an Online Community
Many people with lupus find their world becoming smaller as they spend more time indoors to avoid sunlight exposure or to be properly rested. Still, it’s important to remain connected to other people and not allow yourself to get isolated. Fortunately, in this technological age, you’re only a mouse click away from communities that can keep you informed, entertained, and connected.
When Mack started searching for connections online, her first stop was a logical one -- an online message board for people with lupus. There she could chat with others facing the same struggles and challenges. “When I was at the end of the long process of applying for disability, I was able to help and encourage others,” she says. “It felt good.”
Mack’s online activities branched out, and she’s now a member of a bargain-finders community. She also plays interactive games at pogo.com, where she discusses the challenges of lupus with interested game players. “People always ask about it, and online I became more comfortable talking about it,” Mack says, adding that the comfort eventually extended into her “face-to-face” conversations.
Of course, anyone who is meeting people online should proceed with a degree of caution. As in any situation, total security may be impossible, but you can take steps to protect yourself:
- Proceed with caution: Don’t dive headfirst into a community. Curb your enthusiasm, and investigate the site and its backers before chiming in. Monitor any e-mail list or message board before becoming an active member. A good place to begin is lupus.org/messageboards.
- Be your own editor: It’s tempting to overshare with newfound online friends, but make sure you edit all messages before you press send. Don’t give out any private information. After all, things remain in cyberspace long after we first publish them, and you never know who may stumble upon your personal data later on.
- Don’t believe everything you read: Remember that the Internet is open to everyone, and people can post anything on a Web page. Sometimes opinions and misinformation are presented as facts, so read with caution, and make sure you verify what you learn online. This is especially important when it comes to medical information. Start with Websites sponsored by reputable sources like the LFA (lupus.org), and keep your doctor in the loop by asking him or her any questions that may arise.
6. Never Give Up
When faced with so many challenges, you may be tempted to just admit defeat. But when it comes to coping with lupus, your optimism may be one of your best weapons, so cling to it and never give up.
“It’s often hard to see the light at the end of the tunnel, but the first thing I remember is that [having lupus] is not the end of my world,” says Mack. “I don’t ignore the fact that I have lupus, but I recognize there’s hope in the future.”
When she feels down, McKinney focuses on the things that make her feel upbeat and positive. She suggests reading relevant books when you need to be uplifted. She also believes in the power of pets. “I have a boxer named Sophie Belle. She’s like a child to me and an incentive to face every day.”
Find what gives you incentive, and let it empower you when you face the challenges of lupus. Recognize that, despite the illness, you’re still you -- and you have the power to help yourself face all of life’s challenges!
Those Who Help You Help Yourself
It’s always important to be your own advocate, but you have to know where to find help when you need to reach out. In addition to the resources mentioned in the article, these sources are worth checking out when you’re looking for assistance.
Registered Caremark.com users can save money on medications, manage prescription benefits, access valuable health and wellness topics, and use online tools and resources.
RXAssist: Patient Assistance Program Center
RxAssist offers a comprehensive database of patient-assistance programs, as well as practical tools, news, and articles for health care professionals and patients.
RxHope is the only patient-assistance Internet initiative financially supported by the Pharmaceutical Research and Manufacturers of America (PhRMA) and participating pharmaceutical companies.
Partnership for Prescription Assistance
The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations, and community groups to help qualifying patients who lack prescription coverage get the medicines they need through public or private programs that are right for them. Many will get medication free or nearly free.
This public service program, created and sponsored by some of the world’s largest pharmaceutical companies, offers a free prescription-savings card for eligible residents of the United States and Puerto Rico who have no prescription drug coverage.
NeedyMeds provides information for people who need help with the cost of medicine and other health care expenses.
PHARMACEUTICAL COMPANY PATIENT ASSISTANCE PROGRAMS
The National Financial Resources Guidebook for Patients
This state-by-state directory provides information for people seeking financial relief for a broad range of needs, including housing, utilities, food, transportation to medical treatment, and children’s resources.
National Patient Travel Center
The organization provides information on U.S. charitable medical air transportation resources.
U.S. Food and Drug Administration (FDA)
The FDA offers up-to-date consumer resource information.