Just try keeping up with Raven Miller. The 31-year-old juggles a numbers-crunching job as an auditor at an Atlanta mortgage company. She parents 2-year-old dynamo, Niko, all by herself. And, every day, she touches base with her social media platform — Raven Takes RA on Instagram and YouTube. In between, Raven practices the self-care that keeps her positive, looking radiant, and feeling her best.
The way she sees it, she has no choice: “Niko is my motivation. I have to be able to be in the moment with him, to match his energy,” says Raven, of “Mommy’s boy” who loves to tackle her, wrestle with her, and jump on her knees. “I have to be here for him.”
But getting to this place — of balance, optimism, and strength — hasn’t been easy. She’s already undergone one total knee replacement (of her right knee) and is facing another, and had De Quervain release surgery to decrease pressure on a tendon in her right wrist.
The journey started 11 years ago, when Raven started waking up with swollen joints. “Only my fingers were bothering me. I would rest my head on my hands while I slept, and I thought maybe it was from the pressure. But my grandmother said, ‘The way your fingers are looking, that’s from arthritis, not from sleeping.’”
Raven thought she was too young for arthritis, but one blood test proved her wrong. “After the results came in, my doctor called me and said, ‘You have to come back immediately,’” remembers Raven. “She told me I had severe rheumatoid arthritis (RA) and referred me to a rheumatologist.”
“I Thought It was Going to Go Away”
Although Raven was straight-A student at Fort Valley State University, she didn’t use her research skills to investigate her diagnosis. Instead, she put her faith in her rheumatologist and took the hydrochloroquine he prescribed. “I thought the arthritis was going to go away,” she says. “No one explained anything to me.”
But the RA intensified: “I’m in college. I don’t know what’s going on. My knees hurt. I could barely walk. Everything was starting to swell,” recalls Raven. “I had my own apartment, and that was horrible. I had no family around me; my friends didn’t understand.” Unable to get to class because of the pain, she went from A’s to D’s and F’s — and ended up failing an entire semester.
“The World Was Closing in on Me”
When she complained to her rheumatologist that the treatment wasn’t working, he told her she was just being emotional and dramatic, that it wasn’t that bad. “He was gaslighting me,” she says. And when she told friends about her distress, they told her to ice her joints or take turmeric.
Eventually, she switched to a biologic. “All my pain started going away,” says Raven. But the relief was short-lived. When she started flaring again, her doctor prescribed prednisone, which sent her into a spiral.
“My weight shot up to 170,” says Raven. “I didn’t have any self-esteem. I thought I was ugly. I couldn’t walk. My friends started accusing me of faking my illness because one minute I could be fine, but in the next I would be in pain and could barely walk. “I felt like the world was closing in on me, and this was at a time when I was still trying to figure out the disease myself. I couldn’t get out of bed. I couldn’t open my pill bottles. I couldn’t move at all.”
“The Right Treatments Turned Things Around”
Feeling lost and alone, Raven started doing her own research and found a rheumatologist who took the time to explain what was going on with her body. After some trial and error, she finally found a treatment that made a difference — Rituxan (rituximab). “I’ve been on it for five years, and it works wonders,” says Raven, who ultimately graduated with a BS.
She also decided to turn to others with RA, but when she went online in search of community, she says, “I couldn’t find anyone who looked like me — everyone was in their 80s.” That’s when she put herself out there, starting her own YouTube channel — Raven Takes RA — and Instagram in the hope of finding people she could relate to.
“The Power of Community Helps See Me Through”
Now that’s she’s preparing for a second knee replacement, Raven admits she’s a little nervous. This time, she has Niko to care for. But she takes comfort in her strong support system— her parents, her grandma, her best friends, her church family, her co-workers. “We’ll be taking it day by day to see who can help me,” says Raven, adding, “They treat me as if I’m this royalty. ‘Hey, you sit down,’ they say, ‘we’ll get everything for you.’”
And her Raven Takes RA family is there for her, too. That’s her 2,000-strong network of social media followers who check in on her regularly. “They send me little goodie bags — whether a letter with an affirmation, a wrist brace, or a Biofreeze patch.” Plus, they understand what she’s going through: “I can vent to people on the platform, and they don’t judge me.”
Raven’s Advice for Living Well with RA
Here, Raven shares more strategies that have helped help her get good care and lead a vibrant life with RA:
Find your perfect-fit doctor
Raven says it took her six years. “I went on Google and typed in ‘rheumatologist in my area.’ I’d call them to see what their schedule was. Then I would go and ask the people in the waiting room, ‘How long have you been going here? Do you like this doctor?’”
Today, she’s thrilled with the treatment she’s getting. “The rheum I have now, I love her,” says Raven. “She treats me like she’s my mom. She always asks me questions to understand what I’m going through. I have her personal info in case I want to talk to her. I can call her the same day and say, ‘It’s Raven; I’m flaring. I need to see you today’ and she says, ‘Okay, let me make space.’”
It’s a stark contrast from her previous doctors: “When I told one doctor that every time I walked it felt like someone was cutting my knee off, he said I was fine. I left his office crying wondering why he wasn’t listening to me.”
Stay consistent
“I try to stay consistent with my routine, which includes prayer, drinking lots of water, getting my greens in, stretching, and touching base with my social media platform every day so if I have any bad energy, I let it out.
With prayer, Raven reads scriptures to match what she’s going through. For example, during a remission, she googled “Bible, healing” and pulled up Ephesians 3:20 — “…God can do exceedingly, abundantly above all that we ask or think, according to the power at work within us…”
Focus on what you can do
“Before RA, I was on the dance team in high school,” says Raven. But between the RA and her knee replacement — especially having had one at such a young age — she’s had to make some accommodations. “With the knee replacement, they want you to tone down your lifestyle so it lasts longer,” says Raven. “While I might not be able to do hip hop, I can do stretches and I can do ballet because it’s free flowing dance.”
Explore alternatives (with your doctor’s okay)
Raven’s rheum knows she’s interested in holistic therapies so she talks Raven through various options. She’s tried cryotherapy, where you step into a chamber that’s cooled to as low as -200 or -300 degrees F for a couple minutes; local cryotherapy, in which freezing air is directed at a painful area; and a float spa, a pod filled with salt water. “You’re in there for about an hour,” says Raven. “It helps release tension and puts you in a good mood. You’re able to move as if you don’t have arthritis!” Next on her list: acupuncture.
Don’t be shy to ask for help
It’s actually hard for Raven to ask others for a hand — “I don’t want to feel like a burden,” she says. Yet even she admits that a little help can make a big difference. For example, when she pulls into the daycare parking lot, the teachers come to her vehicle to get Niko out, and in the evening, they bring him to her car and strap him in his seat.
And when she was prescribed an injectable biologic years ago, she realized “I didn’t have the stomach for it. I’m a wimp, and I couldn’t stick myself with the needle,” so she asked a friend to come and inject her every week.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
If you’re interested in being a patient advocate with ArthritisPower and helping our efforts to engage more diverse patient groups in research, check out our Patient Engagement Advisor Program.
