Making Meaningful Connections Online
An RA diagnosis expands family bonds and a sense of adventure for Lisa Reinstein.
By D. Aileen Dodd | Feb. 6, 2025
Lisa Reinstein is divorced with no children but her family spans three continents and 10,025 miles, stretching from England to Saudi Arabia to Northeastern Virginia. And it’s growing larger by the year. They are bonded together by laughter, love, pain — and rebellious proteins in their blood. Yes, her inner circle has rheumatoid arthritis (RA).
They are multicultural, multinational, multilingual and multigenerational — yet they understand each other’s journeys. The bad days. The good days. Explanations aren’t needed at meetups.
They simply understand.
For Lisa, of Sterling, Virginia, finding this virtual circle of care has been a game-changer. She’s been living with RA symptoms for nearly 40 years, but she knows she’s not alone. She has found strength in numbers.
“I had always been looking for someone to talk to about this,” says Lisa. “I have met so many wonderful people. They have been so helpful.”
She has peace and purpose despite the pain of throbbing hands and twisting fingers that drop things or the burn of broken bones and bruises from the multiple falls she’s faced with weakened joints. At 69, Lisa has even taken up horseback riding just because she still can.
Her journey towards her extended family tree began in the early 1980s. Lisa was researching her autoimmune symptoms with her dial-up modem back when the Internet was in its infancy and stumbled across a virtual bulletin board that included RA patients. She was intrigued. The posts from strangers were raw and revealing — and she could totally relate to their struggle.
RA was wreaking havoc on the joints of the online community, causing their hands, feet, ankles and knees to swell in defiance. But instead of cowering, they built coalitions. They swapped pain management remedies like recipes. They shared challenges. They fought together against challenges and the comorbidities that can follow RA, such as heart and lung diseases.
“We got kicked off the bulletin board because we were too rowdy,” Lisa says. So, the they started their own message board —"‘The Rheuma Misfits’ launched by Mamma Turd. It’s because arthritis is such a turdy thing to have,” Lisa jokes. “Now, we are on Facebook and have some of the original people from way back before the Internet began. We have someone from Saudi Arabia. One couple is from England. And we have had gatherings. We met in Dallas a couple of times and Washington, D.C. We talk and laugh. When someone says, ‘Hey, I gotta’ sit down,’ we understand that.”
In tribute to a fallen Rheuma Misfit who died in 2015, Lisa became active in the Arthritis Foundation. Lisa had often visited the Foundation’s website and participated in fundraising walks in Houston and Virginia where she had relocated after the space shuttle program and her marriage ended. (She formerly worked in telecommunications at Mission Control at Johnson Space Center.) When Lisa began volunteering as an Arthritis Foundation Connect Group co-facilitator, she had another platform to share her story and help others in the RA marathon.
Lisa Reinstein is divorced with no children but her family spans three continents and 10,025 miles, stretching from England to Saudi Arabia to Northeastern Virginia. And it’s growing larger by the year. They are bonded together by laughter, love, pain — and rebellious proteins in their blood. Yes, her inner circle has rheumatoid arthritis (RA).
They are multicultural, multinational, multilingual and multigenerational — yet they understand each other’s journeys. The bad days. The good days. Explanations aren’t needed at meetups.
They simply understand.
For Lisa, of Sterling, Virginia, finding this virtual circle of care has been a game-changer. She’s been living with RA symptoms for nearly 40 years, but she knows she’s not alone. She has found strength in numbers.“I had always been looking for someone to talk to about this,” says Lisa. “I have met so many wonderful people. They have been so helpful.”
She has peace and purpose despite the pain of throbbing hands and twisting fingers that drop things or the burn of broken bones and bruises from the multiple falls she’s faced with weakened joints. At 69, Lisa has even taken up horseback riding just because she still can.
Her journey towards her extended family tree began in the early 1980s. Lisa was researching her autoimmune symptoms with her dial-up modem back when the Internet was in its infancy and stumbled across a virtual bulletin board that included RA patients. She was intrigued. The posts from strangers were raw and revealing — and she could totally relate to their struggle.
RA was wreaking havoc on the joints of the online community, causing their hands, feet, ankles and knees to swell in defiance. But instead of cowering, they built coalitions. They swapped pain management remedies like recipes. They shared challenges. They fought together against challenges and the comorbidities that can follow RA, such as heart and lung diseases.
“We got kicked off the bulletin board because we were too rowdy,” Lisa says. So, the they started their own message board —"‘The Rheuma Misfits’ launched by Mamma Turd. It’s because arthritis is such a turdy thing to have,” Lisa jokes. “Now, we are on Facebook and have some of the original people from way back before the Internet began. We have someone from Saudi Arabia. One couple is from England. And we have had gatherings. We met in Dallas a couple of times and Washington, D.C. We talk and laugh. When someone says, ‘Hey, I gotta’ sit down,’ we understand that.”
In tribute to a fallen Rheuma Misfit who died in 2015, Lisa became active in the Arthritis Foundation. Lisa had often visited the Foundation’s website and participated in fundraising walks in Houston and Virginia where she had relocated after the space shuttle program and her marriage ended. (She formerly worked in telecommunications at Mission Control at Johnson Space Center.) When Lisa began volunteering as an Arthritis Foundation Connect Group co-facilitator, she had another platform to share her story and help others in the RA marathon.
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Her RA race started at age 31 when she was planning to leave for work at Mission Control.
“I woke up one morning, and I had a fever and a rash, and my joints hurt like crazy. My knees were extremely painful. I just felt awful,” Lisa recalls. She was diagnosed with rheumatic fever. “I missed six weeks of work.”
Her condition worsened and eventually she was referred to a rheumatologist who diagnosed with her with RA. The disease was prevalent in her father’s side of the family. “My grandmother had gnarled big joints because there was nothing (available to treat her),” Lisa recalls. “My Aunt Selma wouldn’t take any medicine. My dad said her hands were so bad that she couldn’t put them in her pocket.”
Lisa’s doctor decided to treat her condition aggressively with medication to slow its progression. She now also has what she calls “RA lung.” Two lung diseases — pulmonary fibrosis and bronchiectasis — that cause shortness of breath. “Thankfully, it’s a mild case,” she says.
The diagnosis hasn’t stopped Lisa from living her best life. After all, she has an international support system and something to look forward to. “I did discover horses at age 60,” she says. “It gave me a whole other family of horse people.”
Lisa fell in love with horses on the spot after taking her grandniece to a horseback riding lesson. A month later, Lisa also began riding lessons in Virginia, which she says made her feel “fabulous.” Then, she bought a Palomino Quarter Horse.
Lisa now volunteers at the farm where her horse is boarded. “I start my day with a cup of coffee. I read my scriptures. My favorite is, ‘May the Lord bless and keep thee and make his grace to smile upon thee and grant thee peace,’’’ Lisa says. Then, she goes to the barn. “I hug my horse. It makes me happy.”
She has this advice for the Rheuma Misfits and all others who live with the daily challenges of RA: “You just can’t give up on life. Find something that you love and do it while you still can!”
“I woke up one morning, and I had a fever and a rash, and my joints hurt like crazy. My knees were extremely painful. I just felt awful,” Lisa recalls. She was diagnosed with rheumatic fever. “I missed six weeks of work.”
Her condition worsened and eventually she was referred to a rheumatologist who diagnosed with her with RA. The disease was prevalent in her father’s side of the family. “My grandmother had gnarled big joints because there was nothing (available to treat her),” Lisa recalls. “My Aunt Selma wouldn’t take any medicine. My dad said her hands were so bad that she couldn’t put them in her pocket.”
Lisa’s doctor decided to treat her condition aggressively with medication to slow its progression. She now also has what she calls “RA lung.” Two lung diseases — pulmonary fibrosis and bronchiectasis — that cause shortness of breath. “Thankfully, it’s a mild case,” she says.
The diagnosis hasn’t stopped Lisa from living her best life. After all, she has an international support system and something to look forward to. “I did discover horses at age 60,” she says. “It gave me a whole other family of horse people.”Lisa fell in love with horses on the spot after taking her grandniece to a horseback riding lesson. A month later, Lisa also began riding lessons in Virginia, which she says made her feel “fabulous.” Then, she bought a Palomino Quarter Horse.
Lisa now volunteers at the farm where her horse is boarded. “I start my day with a cup of coffee. I read my scriptures. My favorite is, ‘May the Lord bless and keep thee and make his grace to smile upon thee and grant thee peace,’’’ Lisa says. Then, she goes to the barn. “I hug my horse. It makes me happy.”
She has this advice for the Rheuma Misfits and all others who live with the daily challenges of RA: “You just can’t give up on life. Find something that you love and do it while you still can!”
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