Lack of access to health care made his disease worse, but his spirit is strong.
José Velarde is a devoted father of three, husband, brother, son, and friend. Despite living with rheumatoid arthritis/rheumatoid disease (RA/RD), he has found a way to make the most out of his new reality. Taking to heart a conversation with his mom—“Son, this disease will either make you a bitter person or a better person”—José strives for the better every day.
I Thought I Was Just Getting Old
In 2007, José was having trouble with his right knee. An MRI revealed he had torn his meniscus. While rehabbing from arthroscopic surgery, his left knee began bothering him. Although José chalked it up to 30+ years of competitive soccer, his doctor decided to scope the area only to find “junk” behind his kneecap. The pathology results indicated RA/RD, and bloodwork confirmed the diagnosis.
“Looking back, it’s hard to tell exactly when I started showing symptoms,” José shares. “There were many times after a (soccer) game when I was so sore I could barely walk, or mornings when I was extremely stiff, followed by a lot of pain. But I always thought that I was just getting old.”
José was 40 when he received his diagnosis. He explains the disease as having a hyperactive immune system that is mistakenly attacking healthy tissue. It typically affects the soft tissue in his joints, but being a systemic disease, it can (and does) attack any part of his body.
At first, José pretended everything was fine. His rheumatologist told him he could do whatever he wanted, as long as he could live with the pain. He did just that! José continued living his day-to-day life, working out, playing with his kids, doing what he enjoyed. But along the way, the disease began slowing him down. He couldn’t keep up.
Today, José’s hands show the damage. He must use a handicap tag and park close to wherever he is going in order to make it. There are days he can barely walk, and exercise is out of the question. “Some days, it takes everything I have just to make it through the regular day.”
However, José refuses to let the disease dictate his life. Soccer has been his passion since he was little. His father is a former semi-pro soccer player in Mexico; the sport is in his blood. José started playing competitively in high school. He coached for 10 years at the high school level, and then club for another five. Now, he coaches youth soccer every Saturday. “It takes a lot out of me,” he says. “I basically survive Saturday to be useless Sunday, but it fulfills me. I wouldn’t want it any other way.”
Lack of Health Care Access Caused Further Damage
José has been prescribed disease-modifying anti-rheumatic drug therapy (DMARD) drugs, biologics, steroids, non-steroidal anti-inflammatory drugs (NSAIDs), and opioids. When looking into his diet, he discovered he has a wheat allergy, so he now avoids bread and gluten—items that trigger more inflammation in his body. He also limits his intake of red meat, while significantly increasing the amount of vegetables and greens he consumes.
Sadly, his disease is out of control because of a lapse in health coverage. In 2015, the company where he worked was sold, and the new owners did not offer the same coverage. Without access to the insurance he needed, José’s disease went untreated.
He did not see any of his doctors or take any of his medications, which led to further permanent damage to his body.
Now back under the care of his health care team since the beginning of 2017, he self-administers a weekly biologic injection and takes multiple pain medications, but José hasn’t forgotten what he endured: “It took everything I had just to keep putting one foot in front of the other.”
José understands all too well the struggle countless individuals living with chronic pain face accessing affordable care.
“Money should never be the deciding factor when discussing with your doctor how to proceed regarding the best treatments for you,” he says. “No one should have to worry about finances when trying to attain medical help. I am not saying health care should be free, but it has to be reasonable. A treatment protocol should not jeopardize a family’s ability to live.”
Despite his current predicament, José says he is optimistic for future medical advancements.
“I never give up hope,” he says, “but I also am not waiting for that day to arrive to start living my life.” Instead, he looks for ways to adapt and adjust to his new normal.
José had been extremely independent his whole life. He was always there when anyone in his family needed anything.
“Now I have had to accept the fact that I need to be comfortable asking for help, and more importantly, accept that help. This is something I am still working on.”
To the recently diagnosed, José recommends educating yourself on your disease and the options available.
“RA is different for every person. You almost have to become a researcher to be your own best advocate,” he says. “Find yourself a good rheumatologist, primary care doctor, pain specialist, and possibly a nutritionist. In other words, build yourself a solid medical team you trust to guide you through it.” Treatment choices are so personal, and you have to be part of that discussion. If you don’t feel heard by your medical team, he suggests looking for another person who seems more compassionate or invested in your care.
Adding to that, a supportive or upbeat support group is instrumental in making sure you don’t feel alone in this battle. There are people out there who walk the same road and battle the same monster. For José, discovering the websites RA Guy and RA Warrior helped him significantly.
“I can’t really say I know either RA Guy and RA Warrior personally, but I have learned a great deal from them both,” he explains.
I can honestly say I consider them friends; and in my world, there is no better compliment. They inspire me.
Making an Effort to Stay Positive
José is also mindful that connecting with others can have its downfalls. You can’t let other people’s scary worst-case experiences or dark times influence how you view things or deal with your disease. Social media is great for forming community, but it also can lead to further commiseration in place of empowerment.
“I get that RA has to be a chapter in your life, but it doesn’t need to define your existence,” says José. “I don’t pretend it is not there (it is!), but I also show up to life. I still make plans.”
While José doesn’t let misperceptions bother him, he does wish more of society understood the severity of RA/RD. It is not the same as arthritis in the knee, hand, or shoulder. RA/RD never goes away; it is an autoimmune disease.
“The reality is, we need to change awareness, not necessarily the name of the disease,” he says. He also wishes there was more knowledge about how funds are being spent on research, and further understanding of the mechanism of the disease.
A faithful family man, José is thankful every day for his amazing family. His adoring wife, three incredible kids, four siblings, and caring parents are attentive to his needs, inquisitive about his appointments, and constant cheerleaders through the ups and downs of his journey. All that matters to him is knowing his kids can always count on their dad—no matter what. José is a fighter who continues to find a way to live life on his terms.
“I do my best not to let my disease define me,” says José. “I am a husband, a father, a brother, and a son. I try to be the best ‘me’ I can be and I wish to be remembered for that. Oh, and by the way, I had RA. I want it to be a footnote in the summary of my life.”