When Lori Ruff wakes up each morning, she doesn’t know whether she’ll be able to get out of bed. “There are mornings I wake up and cannot reach my phone just a few inches away,” she says.
Ruff, an executive with ALPFA (Association of Latino Professionals For America) and a popular speaker with a social media following so strong she’s known as The LinkedIn Diva, lives with persistent moderate to severe rheumatoid arthritis and fibromyalgia. Six years ago, she was walking up steps in her shorts. “I glanced down and noticed my left knee was really swollen, and I thought my gosh, that should hurt,” she says.
She carried on with the help of an ace bandage and herbal tea, but within days the pain arrived and she began using crutches. A few weeks later, her right knee swelled up too and she needed a wheelchair. The pain and swelling continued to spread to her ankles, arms, wrists, and hands. She could no longer dress herself or drive, and on January 21, 2011, she was finally diagnosed with RA.
Rheumatoid arthritis is caused by the body’s immune system attacking its own joints and other tissue. There’s no cure, only treatments that include surgery, medicine, and lifestyle changes to alleviate the symptoms. More than 1.5 million people in the United States have RA. Many people experience pain, fatigue, loss of appetite, and a low-grade fever — not to mention nausea and other mild to severe side effects from medications.
Facing the facts
Even before she was diagnosed, Ruff faced some critical decisions. “I was scheduled to speak in Oklahoma City Labor Day week [of 2010],” she says. “I didn’t want to say no. I called and instead of saying I can’t come, I said, ‘I have injuries. I’m in a wheelchair. Can you accommodate me on your stage?’”
The conference organizers were happy to help, even paying for a companion to accompany her on the trip. And with the help of time in the hotel hot tub, Ruff had a successful engagement. “I truly believe if I had said, ‘I can’t come,’ my speaking career would have been over.”
Lori calls 2011 the worst year of her life, as she and her healthcare providers searched for a combination of medicines that would provide some relief without too many side effects. It took several rounds of different medications before she found one that allowed her to walk up the stairs without help for the first time. “That was Christmas Day 2011. I remember having hope that I might get my life back,” she says.
Finding what works best
Over time, Ruff has found some tricks to help ease her symptoms: a constantly changing cocktail of prescription medications, homemade concoctions such as chai tea with ginger to calm the stomach, turmeric to reduce inflammation, honey and lemon, long, hot showers followed by coconut oil to soften her skin, and adjustments to her schedule to accommodate lifestyle changes.
She also has an RA toolbox of sorts with leather wrestling gloves to protect her hands from the use of a self-propelled wheelchair and a tape measure. She keeps a diary, taking measurements of swollen versus normal joints to get a more detailed picture of her health. “Instead of calling my doctor and saying, ‘I’m swollen and it hurts,’ I can say, ‘My knees are 20 and one-quarter inches around instead of 18,’” she says.
Her typical work week is intense, with “Mom’s Tuesday Movie Nights” as a mid-week mental-health boost, followed by recovery on the weekends. On Sunday, she gets up later to go to church. And don’t get between her and football.
During the work week, she can occasionally read the look of concern on her colleagues’ faces. “They’re my mirror,” she says. “When they look at me that way, it’s time to go to bed.”
Most important, Ruff refuses to give in. “I could say my life is over, or I could choose to do something with it. A lot of people live in pain, but I’m smiling because I’m engaged in meaningful conversions with people I care about. That’s how I measure my life now: by my impact when my only other option is to stay in bed.”
Lori Ruff is a professional brand thought leader and LinkedIn specialist, as hinted by her nickname, The LinkedIn Diva. She’s authored multiple books and was named by Forbes as one of the Top 50 Social Media Power Influencers. She’s currently the chief branding officer of ALPFA, the largest Latino professional membership organization in the United States.