The big move
Just the thought of “Moving Day” can cause the best of us to shudder. For people with lupus, relocating can mean a special set of stressors related to health care coverage, prescriptions, and specialists. Whether you’re moving for the first time or you’re a veteran relocator, there are steps you can take to stay healthy through it all.
The key to a successful move is advance preparation, says Sunshearay Steele, 34, a full-time student in Henderson, NV, who has been living with lupus since she was 18. Steele’s husband, Christian, is in the Air Force and on active duty in Afghanistan. “I’ve been married almost 11 years now, and we’ve moved four or five times,” she says. Before each move, Steele makes sure she has enough medication to last a couple of months. “It usually takes a little while to get an appointment with a specialist, and I take 16 pills a day.”
For most doctors, such requests are not a problem. “As long as you’re up on your labs and consult visits, it should be possible to get prescriptions to take with you,” says Donald E. Thomas Jr., M.D., a rheumatologist at Arthritis and Pain Associates in Greenbelt, MD, and assistant professor of medicine at the Uniformed Services University of the Health Sciences in Bethesda, MD. Thomas says most doctors will write a prescription for at least three months’ worth of medications.
Another piece of advice: Get your prescriptions filled before you move, says Nina Brown, 56, who was diagnosed with lupus in 1995 after having symptoms for nearly 20 years. A customer service representative in Canby, OR, Brown is married to a telecom analyst and has endured several job-related moves over the past few years. You can’t rely on the refills you have on current medications, she says. “Some pharmacists won’t fill prescriptions from out-of-state doctors.”
Taking Care of Health Care
Moving—especially for a job—often means changing insurance. Make sure you understand your new coverage before you move, says Brown. “Your benefits may be really different, your lab work might cost more, and your co-payments might change,” she says.
More important, find out when your insurance will actually take effect, says Kristin Gold, 26, a sports reporter with the local ABC affiliate in Columbus, GA. Gold’s jobs are on a contract basis, which means she moves every 18 to 24 months. Her lupus diagnosis came in May 2003. “To move every year is hard—especially when you have that middle ground where your old coverage stops and the next doesn’t start yet. That makes it really important to budget for COBRA, to make sure your coverage doesn’t lapse. It’s one of the things people forget about.” And if you let your coverage drop between jobs, your new insurance plan may not cover you.
For military families, insurance coverage is mostly a matter of paperwork. Military bases can share records quickly through TRICARE, the health care network for military personnel and their families, Steele says. But even then, “it usually takes about a month to get you into the system.”
For each move, family members must re-enroll in the Defense Enrollment Eligibility Reporting System (DEERS), which establishes eligibility for family of active-duty soldiers. “I hand-carry military ID, Social Security cards, and birth certificates and visit the local DEERS/TRICARE office right away to register,” Steele explains. Dependents with chronic conditions should also complete the Exceptional Family Member (EFM) form at the local DEERS office. “The clinics won’t do that automatically, so you have to be on top of it,” Steele says. “Even if you move to a different duty station within the same region, it’s best to let them know you’re there.”
New Home, New Doctors
Most agree that one of the toughest things about moving is switching doctors. “There is a big shortage of rheumatologists nationwide, and it can take about three months to get in to see one,” says Thomas. “Make an appointment with a new rheumatologist several months before your move so you can go in right when you get there.” Ask your current doctor to help you find a rheumatologist in your new town and to share your case history. You can check the local Lupus Foundation of America chapter for referrals.
If you find yourself in dire straits, Thomas says the emergency room is often the only sure treatment center. Your primary care physician may be able to pull strings and get you seen faster. “Person-to-person communication can overcome a lot of hurdles if you are very ill,” Thomas says. Be prepared when you go to the ER or a new doctor with a list of your current symptoms and medications and recent medical records.
And be persistent—Brown had difficulty with the first rheumatologist she tried to see in a new town, who insisted there was nothing wrong with her. “I made the mistake of giving up at that point,” she says. “I had enough medication to slowly go off them, so I did.” After the resulting flare, however, she found another specialist who was not taking new patients, but made an exception.
Having detailed medical histories can help. “Keep documentation of how your diagnosis was made from the very beginning,” says Thomas. “Get copies of your office visit notes right when you start seeing your rheumatologist: lab test results and biopsies, especially biopsies of the kidney and skin. Keep a binder at home with photocopies.” Such information can save time and prevent disruptions in treatment.
Change isn’t always negative, despite the inital stress. Take steps to protect your health and you should come out on top. “I have been to eight rheumatologists as a result of my moves,” says Brown. “At least four of those times, they were able to clarify different things that I didn’t already know, and they all listen differently.”