By The Rogue Rooster
Jamara Nowell was only 20 years old, living in Great Falls, Montana, when she began feeling the symptoms; something wasn’t right. “I remember the first sign was I had this small rash on the inside of my knee, and I though, ‘That’s weird, how in the world did I get ringworm?’” She said. “So my husband [at the time] googled it,” to which they found a possible remedy; however, it only made her feel worse.
Down the road, more signs would arise…signs that something was not right. “I started getting fevers at night. Every night, seven o’clock, for a couple months.” Those fevers were reaching temperatures of about 103 each night, she says.
“Finally, my left knee started kind of aching,” and soon began physical therapy to try and alleviate the pain, but to no avail. “It wasn’t really doing much for the pain,” she says.
Finally, during a drive from Great Falls—where she had been living with her husband at the time—to Spokane, Washington, in order to meet with her friends to drive up to Canada, Jamara noticed her left knee had swollen quite a bit. “When I got back, I saw a doctor,” she says, explaining other pains and aches she was experiencing along with her swollen knee, “…my wrists started aching; my other joints started aching. So he checked me for the flu, and (or course) some other things, and everything came back negative.”
She was then referred to doctors on the nearby Air Force Base, where her husband at the time was stationed, who began testing her for a multitude of causes, taking vial after vial of blood. “After a couple weeks of tests…they put in a temporary IV into my arm. I would come back every day and do antibiotic treatments…they were thinking that might clear it up, because my white blood-cell count was through the roof,” a sign of infection, though nothing was infected.
Her case was then sent to a Rheumatologist and another specialist in rare diseases, who sat with her, asking questions in order to try to pinpoint the possible causes. After spending time with Jamara, the Rheumatologist believed her case—though rare—fell in line with ADULT STILLS, a rare type of inflammatory disease similar to Rheumatoid Arthritis, or how Jamara describes as “Arthritis on crack.”
That was the beginning of it all, according to Nowell. “That was the first time I had ever heard of Adult Stills; I didn’t know what it was,” she says. “They don’t know how you get it, and it’s not genetic…idiopathic is what it is; there’s no reason for it. That was the start of it…it was freaky.”
After her diagnosis, she began seeing her Rheumatologist once a month for six months. “When I was first diagnosed, I was in so much pain…and I would lose anywhere from six to ten pounds every time I’d come in…I came in walking, and by the end of six months, I was in a wheelchair, and he hadn’t done anything as far as prescribe me painkillers at the time.”
Jamara had gone from an athletic 165 lbs. down to 115, which was considered “anorexic” for her height. “It wasn’t until my family came over for my 21st birthday, and my mom didn’t recognize me when I answered the door, that I decided to get help with that.”
At that time, basic movements and chores had become increasingly difficult for her. Even getting up to make food for herself had become too much. She often found herself unable to stand for long without shaking and weakness. A close friend even stayed with her for a time to try and help. “I was not eating. I was not drinking water,” she says. “When I was home alone, I wouldn’t eat or drink anything, because I couldn’t stand up from the toilet, so I just stopped, and so I became very dehydrated and just very malnourished” something that would take a toll on any healthy body. For Jamara, it took a toll on her body, her energy, and more.
Like RA patients, Jamara’s immune system somehow rewired. “Instead of helping, it thinks that the cartilage in my body is an infection, and so then its destiny is to go out and destroy it.” Her case is even rarer, in the sense that her body is only attacking cartilage. “Normally, it goes after your organs—your heart, your liver, your lungs—and then it damages that way…for me, it does not touch my inside organs, and it purely attacks my joints.”
Though her internal organs may be unaffected by her system, her joints are still being targeted and destroyed by her body’s defenses. The damage was costly. Like patients of Rheumatoid Arthritis, in which the joint is surgically removed and replaced—a common treatment in order to alleviate pain, according to the U.S. Department of Health and Human Services (November, 1999)—Jamara began going under the knife for pain relief.
A single trip to the surgeon wasn’t the final pain reliever for her. “A normal auto-immune diseased person with Adult Stills has maybe one joint replacement—a knee, or a hip, or something like that,” says Nowell. “I’ve had seven full joint replacements, and sixteen surgeries, and none of them have to do with my inside organs.” She jokes with her friends now, calling herself the “Bionic Woman Remix.”
Jamara has even contacted and spoken with the founder of the Adult Stills International Foundation, based in Key West, Florida—whose daughter was diagnosed with and passed away from the disease—and even he was fairly baffled with her case. According to Nowell, there is no real test for Adult Stills; her case and diagnosis was simply based on similar symptoms. She was even given the opportunity to speak at a conference at a local hospital about her illness to an audience of doctors, experts, and scholars due to the rarity of her case.
Though her condition hasn’t been 100% explained, Nowell has managed to keep her flare-ups mostly under control over the years, by keeping her stress levels low, and her positivity high. “It doesn’t matter what you have, it doesn’t matter what’s going on in your life; you can choose to be happy, or you can choose to be angry.” She now tells any who ask that her ordeal has become a blessing rather than a curse. “When I tell people it’s a blessing, they don’t really get it,” she says. “You can’t really see it from the outside that it’s a blessing, but it’s a blessing on the inside…and I know who my true friends are, and a lot of people don’t get to find that out in real life.”
No matter what challenges may lay ahead for Jamara and those in her life, one can be certain that she will face it with a smile, something she hopes to spread to everyone around. “Happiness is a choice…”