Russ Miller’s journey with rheumatoid arthritis (RA) began similarly to how many people’s do; with an unexplained pain traveling throughout the body. At the time, Russ was 26 and enjoyed drinking with his buddies in Ohio, where he lived at the time. He assumed the pain might be alcohol related. But even as he cut back his drinking, the pain didn’t subside.
“It felt like I was being crushed by a giant boulder at all times, and it just kept getting worse and worse,” says Russ, now 36 years old. “I felt like I was dying.”
The pain also impacted his work as a software developer, a job that often entailed sitting and manipulating a keyboard for hours.
“It was complicated to type and keep up with deadlines,” Russ recalls. “I got pretty frustrated with that. And back then I had a very hard time controlling my emotions, so I would just lose it and punch things out of frustration. This only made the pain worse.”
As the pain got worse, Russ began to notice physical changes as well. His hands, which could once type with efficiency and speed, started to become misshapen.
“All the knuckles became big and wouldn’t bend the way that I wanted,” he says. “It got to the point where my left thumb wouldn’t bend at all.”
Rheumatoid arthritis commonly affects the hands. A study published in the Journal of Rehabilitation Medicine found that 94 percent of RA patients have at least one hand or wrist symptom. This occurs when the joint lining, known as synovium, becomes inflamed and produces an excess of joint fluid. The extra fluid can lead to swollen tissues, which may then stretch the surrounding ligaments, resulting in deformity and instability, according to the American Society for Surgery of the Hand.
After months of these worsening and worrisome symptoms, Russ decided to seek medical attention. He was diagnosed with progressive rheumatoid arthritis and would need a long-term treatment plan to manage the condition and help prevent it from getting worse.
But Russ, who admits to being stubborn, says he brushed off recommendations from his health care provider.
“I thought if I took good care of myself that I’d be fine,” says Russ. “I refused to look at it seriously.” Rather than continuing to see a doctor, Russ took treatment into his own hands. He changed his diet and continued to abstain from drinking, hoping those changes would heal whatever was causing the pain.
Life Takes a Turn
As Russ tried to manage his symptoms on his own, he faced a personal tragedy: the death of his father in 2012. Though losing a parent would take an emotional toll on most people, it sparked something else in Russ.
“I sort of lost it,” he says, noting that he wasn’t quite sure how to handle this new reality. “I packed up everything that could fit inside my Jeep and drove around the United States.”
Traveling filled the void in the beginning, but life on the road eventually lost its luster — particularly when Russ ran out of money.
He moved in with a roommate in Florida to save on rent and applied for disability as he tried working odd jobs to pay the bills. But most of those jobs fell under the category of manual labor — a challenge when you have constant joint pain and fatigue and limited use of your hands. Though he tried to work through the pain that came with building signs or working as a contractor, Russ’s bosses would eventually let him go, unable to watch him struggle.
“It made me feel like I was broken — an old broken tool that nobody wanted,” Russ says. “I wanted to work, but I physically couldn’t. It was kind of depressing, and just made me want to curl up and do nothing.”
With no source of income, Russ was forced to move out of his apartment. In 2015 — five years after experiencing his first RA symptoms — he was houseless.
The Communication Challenge
For a while, Russ made a home wherever he could: a bench at a bus station, a concrete alleyway, or beneath an awning to hide from the rain. He would pick up a job here and there to get by, but the lack of a permanent address and the physical toll of his rheumatoid arthritis kept him from finding even part-time work.
Then, in 2018, Russ made it his mission to change his living situation. He had a cell phone, but had to rely on free Wi-Fi spots so he could reach out to help centers via social media or email.
But Russ’s RA-related hand deformities made typing on a tiny phone keyboard challenging.
“I’d get trigger finger and tap too many buttons at once, or twitch and hit the wrong button,” says Russ. “My texts would be filled with jumbled-up words, and people would regularly ask what I meant. I got frustrated. I even broke a cell phone because I was so angry about not being able to communicate.”
He tried voice services, but felt they weren’t effective. He started searching for keyboard apps that could make typing easier and more accurate. That’s when he discovered TypeWise, a hexagonal keyboard application that uses AI text prediction technology to suggest the word you are trying to type. This way, instead of typing out the whole word, you can simply click on the suggested word for an autocompletion.
Though many keyboard apps offer this autofill option, Russ says he prefers the TypeWise app layout to that of traditional keyboards. The size of the hexagonal letter buttons prevents him from hitting too many buttons (or the wrong buttons). The compactness of the keyboard makes it easier for him to type with limited range of motion.
“I can only text with one thumb, but I do well with it because of the way the app is built,” Russ says. With a life-changing tool at his disposal, Russ felt like he could finally start to turn things around.
Seeing a Specialist
Armed with a new tool to help with communication, Russ began frequenting Recovery Zone, a drop-in center that provides classes, activities, and various assistances for adults. Russ utilized the program to help find work and permanent housing.
With two huge worries off his mind, Russ was able to shift his attention back to his health, which had declined greatly over the years. In addition to the joint pain and hand deformities, Russ was dealing with fatigue, nausea, and migraine daily. Though he was trying to ignore and push through his symptoms, fortunately, someone at Recovery Zone noticed and pushed Russ to see a doctor.
“A woman named Penny told me I had to see a rheumatologist immediately because it was only going to get worse if I didn’t do something about it,” says Russ.
He saw a general practitioner, who scheduled Russ with a specialist at Ohio State University.
“It felt good to finally start taking control of my disease,” he recalls.
A Second Chance
Russ is currently working with his doctor to find a treatment plan that helps with his rheumatoid arthritis. Russ’s doctor started him out on steroids to help relieve his acute symptoms. Though they “made me feel like Superman,” Russ says they also made him gain a lot of weight. He started taking a targeted oral medication for his RA, which eased some symptoms but also caused blood clots as a side effect. He is currently taking the disease-modifying drug methotrexate as he and his doctor consider additional treatment options.
Russ also recently underwent hand surgery to fix some of the deformities that may have resulted from his untreated RA. Once he has recovered from the procedure, he will begin physical therapy in hopes of regaining some of the mobility and use he lost over the years.
Russ has also been learning mindfulness techniques to channel his feelings and change his perspective.
“I’ve sort of accepted the fact that I’m probably going to be in pain for the rest of my life, so I need to focus every single day to try and change my negative thoughts to positive.”
But it isn’t all roadblocks. Russ has since moved out of the housing facility and into an apartment with a roommate. He’s awaiting the results of a job assessment to see if he is physically able to work and, if so, in what type of environment. In the meantime, he has reapplied for disability. In general, Russ says he is “hopeful and optimistic about the future; I think good things are coming.”
“I believe I’ve been given a second chance to try and make things better,” he says. “I’ve made some steps to try and better my heath. I want a better quality of life and want to be happy again, because I haven’t been for many years. As long as I don’t stop, I think I’m going to have what I need, and I’ll finally be better.”
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Horsten NCA, et al. Prevalence of hand symptoms, impairments and activity limitations in rheumatoid arthritis in relation to disease duration. Journal of Rehabilitation Medicine. November 2014. doi: https://doi.org/10.2340/16501977-0619.
Interview with Russ Miller, a rheumatoid arthritis patient
Rheumatoid Arthritis. American Society for Surgery of the Hand. https://www.assh.org/handcare/condition/rheumatoid-arthritis.