The pain continued to get worse, however — almost to the point where he could barely take a step without excruciating, debilitating pain. By the time Lev was in ninth grade, he had to drag his leg around when he walked. “I limped around with horrible pain for two years and could barely walk,” says Lev, 44, who now lives in New York City and is the father of two children. “General practitioners would tell me that it was just growing pains. Because RA isn’t common in younger people, everyone seemed to write it off.” It wasn’t until Lev had an injury that sent him to emergency room that he finally had insight into what was causing his chronic pain. “The doctor came in and asked me if I’d ever been to a rheumatologist,” he recalls. “At that point, the ER doctor could see that I already had damage in my joints and that damage was irreversible. He said to do whatever we could do get it under control. So we made an appointment right away with a rheumatologist.” Lev’s life with RA may have started young, but his journey since shows just how the condition and its symptoms can be overcome — with the right care.
Finding the Right Care
Unfortunately, Lev’s first rheumatologist had poor bedside manner and blamed his mother for letting her son’s condition go untreated for so long. That rheumatologist recommended “starting with the heavy guns” and began treatment with an immunosuppressive drug called methotrexate, according to Lev. However, that drug can cause an array of side effects, including weakening of the immune system, hair loss, and depression — and Lev experienced all of them. “I became seriously depressed because I didn’t feel in control of anything,” he explains. Not only that, he explains, but the medication wasn’t working. “When it didn’t,” he says, “I felt like my life was over.” Lev eventually sought out a new rheumatologist and has since been able to get his RA under control. In 2004, however, he was diagnosed with lymphatic cancer and was put on chemotherapy for nine months. As it turned out, the chemo that suppressed his immune system also improved his RA. “I could do anything — swim, walk, hike,” he recalls. Once he recovered from the cancer and those treatments stopped, though, Lev’s RA symptoms began to return. About five years ago, he started on biologic therapy, a class of drugs made from genetically engineered proteins that target the parts of the immune system that cause inflammation, according to the Arthritis Foundation.
A Good Mix
In addition to his biologic treatment, which involves periodic infusions at his rheumatologist’s office, Lev has also explored, with the advice and support of his care team, using cannabinoids (CBDs) for pain relief. Much to his surprise, CBD not only relieved his RA pain but nearly eliminated it entirely. The use of CBD has also allowed him to wean off steroids, which he had been on for 23 years. “For me, it was like a ‘wow’ moment when I started using [CBD] as a complementary treatment,” Lev recalls. “I felt like I finally reclaimed my life from this terrible disease. I’m evidence that you can live a full life even with RA.” Here are Lev’s top tips for living with RA.
Find a doctor you feel comfortable with.
For Lev, his experience with his first rheumatologist left him feeling defeated and at fault for letting his condition worsen. “You have to connect with your doctor on an emotional level because dealing with RA can be emotionally exhausting,” he says. “Your doctor needs to be there to support you. My first doctor shot down anything active I wanted to do, saying I couldn’t with my RA. Finding a doctor who has a can-do, positive attitude is a must.”
Consult with an occupational therapist.
“See if they have any tips about adaptive equipment that can help you perform everyday tasks with less pain and more independence,” he suggests. “This is true in general, but when raising kids, especially during the early years, the number of tasks to perform around a child is infinite. From changing diapers, to burping, to bathing, to dressing, the list is endless.”
Try to create a flexible schedule.
“RA can be unexpected, not to mention rife with morning stiffness,” he notes. “A flexible schedule can give you that personal time you need for yourself to help you handle your RA. These days, the ‘work from home’ environment is perfect for a flexible schedule,” he adds. “Additionally, there are many online freelancer platforms that allow you to have full control over your schedule.”
Ask about an ergonomist.
“Many companies offer the service of ergonomists, [who can help you design a safe and healthy work environment],” he says. “Take advantage of that. And if such a service is not offered, don’t be afraid to ask. Usually, employers will be happy to support their employees’ well-being.”
Seek support from family and friends.
“It’s literally impossible to go through raising a family and having active RA without strong support from your spouse and later from your kids,” he says. “Especially if you’ve been newly diagnosed with RA, it’s important to have a serious conversation with your other half clarifying that you’ll be always doing your best… but that sometimes you just won’t be able to be there.” Sometimes, he adds, “your spouse will have to do the heavy lifting. Literally.”
Stay positive.
“Don’t come to your doctor with a defeatist attitude,” he advises. “Yes, it’s awful to have RA. But there are things you can do to help yourself if you’re willing to try. The more prepared you come with research you’ve done and information you’ve found to share with your doctor, the better your treatment plan can be.”
Find others with RA.
It’s easier to cope with an autoimmune disease if you have a supportive community around you. For Lev, volunteering with the Arthritis Foundation not only helped other people with RA, but also helped him. “There are hundreds of support groups just for RA,” says Lev. “Finding one that suits you can be really helpful.” A study published in January 2020 in the journal Clinical Rheumatology found that RA patients derived great support and knowledge from participating in a support group. “Consult with fellow RA patients who have already successfully navigated raising a family,” he says. “There’s an abundance of Facebook groups and dedicated discussion forums for people with RA and usually, people will be happy to share their insights on tackling challenges you are facing. Remember, you are not the first one nor the last one to go through this situation, and many have already aced it. Leverage their experience.”
Look into augmenting your medications.
Many of the medications for RA are expensive, so Lev suggests speaking with your health insurance company to find out how to get the best discount possible. “Also, work directly with the pharmaceutical companies to see how they can help subsidize the medications,” he adds. “Often, they work with patients to lower the cost of medications.” This alone, he says, can help alleviate stress — and that can pay off in other ways, too.
