Michelle Castro: Serving Others as Advocate, Author and Leader 

Por D. Aileen Dodd | 12 de noviembre de 2024.

When Michelle Castro finally received her chronic arthritis diagnosis, it was too late to slow the course of the disease. Rheumatoid arthritis (RA) had roamed unchecked throughout her body since childhood, first weakening her joints, and then, decades later, triggering trouble in her vital organs. 

Her very life was in jeopardy, not to mention her role as a loving mother and successful home health care nurse.

Her 2019 prognosis was alarming: "I was diagnosed and told, 'You could have five or 10 years left to live,'" says Michelle of Beaumont, California. "I was having issues with my organs - and that is one of the last stages of rheumatoid arthritis. It had started affecting my liver and my kidneys." 

Michelle was floored by her doctors' words, but she wasn't about to give up on life. In fact, it has opened a new chapter for her.

Some 1.5 million people nationwide have rheumatoid arthritis, and women are affected three times as much as men. There is no cure. RA complications can be life-threatening if the disease is not well-controlled. It can lead to heart attack, stroke and chronic kidney disease. 

Michelle refuses to live in fear. In fact, she feels empowered by her RA diagnosis — vindicated even. She always knew that her doctors were missing the root of her pain. She had seen scores of them since the joint aches that she suffered following her teenage growth spurt led to persistent, agonizing pain in her middle ages. The last seven doctors believed she had fibromyalgia. 

“They weren’t in my body, and I just knew something else was wrong,” she says.

Michelle leans on her walker when she needs it and her belief in a higher power to give her the strength to be the change that she wants to see. She is intent on using whatever time her doctors say that she has left to help others cope with arthritis and other chronic illnesses. It is her way of nursing the masses.

About five years ago, Michelle launched a new RA support group with the Arthritis Foundation because she couldn’t find one in her area. In just two years, the RA National Connect Group swelled to 930 members, giving her clout as a facilitator and influencer. She invites special guests, such as rheumatologists, occupational therapists and psychiatrists to speak to members over Zoom every other month.

“Being a facilitator was … like being a nurse; it was something I felt called to do,” she says. “I live in an older community not that far from Palm Springs. I figured what better place to try and have something for RA or OA [osteoarthritis], and if someone hadn’t started it, let me be the first. I want to make a difference in other people’s lives.”

Recently, Michelle began another new chapter in her life as an author. A woman of faith, she had searched for a devotional book of prayers to guide her through her chronic illness but found none that spoke to her. "I started writing my own," she says. And she now has a book deal with Trinity Broadcasting Network Publishing. "The publisher that I spoke with said his first wife had dealt with cancer, so he knew that there was a need for a devotional." 

Michelle continues to fight for her health, too. She has tried infusions, injections, chemotherapy, drugs for pain and inflammation, and she was No. 4 in the country to receive a surgical implant in a clinical trial to stimulate her vagus nerve. She had it removed a year later after it stopped working for her. Now, Michelle and her son live with her parents, Carlos and Renee Castro, who help her with errands, cooking and offer moral support. Her father has osteoarthritis. 

And although Michelle is thankful for each new day, she lives in constant radiating pain that hovers at an 8 on a 10-point scale. Her neck, back and joints hurt. "I can't just jump out of bed like I used to be able to do. I have to spend a little bit of time shaking off my limbs, so I can get up with as minimal pain as possible," she says. "I use heating pads, ice, topical ointments - anything that I can get my hands on that will help me."

Sometimes, the pain is so intense that Michelle's 90-year-old grandmother, Vickie Ortiz, helps her to dress and undress. Michelle has had to cut back on her nursing shifts and focus on her wellness.

And recently Michelle's son has started complaining of pain - a kid that rarely complains about anything, she says. He experienced the same kind of growth spurt that she did when she was a teen and he is limping and showing signs of joint inflammation. Michelle is pushing his doctors for tests to rule out RA. She wants to give him the time to manage the disease that eluded her and recommends that parents facing similar situations to advocate for their kids.

"Because I went undiagnosed for many years when I was growing up, I don't want to turn my back on this," Michelle says. "I want to make sure we don't get pushed aside, and he doesn't have a diagnosis. If one doctor doesn't want to do the tests, find another doctor."