by Kirby Lindsay Laney, posted 1 May 2017
May is Lupus Awareness Month, and the Pacific Northwest office of the Lupus Foundation of America is offering an exciting and entertaining event to raise money (and awareness) of this insidious, little understood and chronic disease. The Great Unknown Challenge starts at 9a on the morning of May 20th, taking teams on obstacles and contests that test brains, brawn and/or senses, with some assistance by select local celebrities.
The event illuminates the struggle faced by Lupus patients. In the case though, not knowing what to expect, and being adventurous enough to take the leap to participate in the first-ever Great Unknown, is a big part of the fun. As organizers ask, ‘Do you have what it takes?’
The Great Unknown Challenge will raise much needed money for advocacy, support, and research to find a cure for Lupus, a chronic inflammatory disease. In patients, the body’s immune system attacks its own tissues and organs, affecting different systems during flare ups, including joints, skin, kidneys, blood cells, brain, heart and lungs.
During the Great Unknown Challenge participants will be work in teams, of two or more, like Lupus patients who generally work with a medical team, along with their personal support network. “You’re not on your own,” Comenant said. Participants will be tested, physically, mentally and in other ways, again like a Lupus patient. As Sara Kochanski said about her Lupus journey, “We don’t know what is coming next.” Also, participants won’t receive much advance information about the Great Unknown Challenge, like Lupus patients. For patients, trying to describe their illness to friends and family, employers and teammates, can be nearly as difficult as the original discovery of what was wrong with them.
Help Us Solve The Cruel Mystery
Wilma Comenat, Director of Development for the PNW Lupus Foundation office, came up with The Great Unknown Challenge to offer “an experience that you can share,” she said, “and do good for your community. It’s an event to test people’s brain, brawn and sense of adventure.”
“I wanted it to be different,” Comenat observed. She wanted something unlike traditional charity fundraising dinners, golf games and auctions. She wanted this event to stand out, to draw the attention of a broader audience, to grow awareness of the disease, and to illustrate what Lupus patients suffer. Ultimately, the Great Unknown Challenge offers a hands-on opportunity for powerful philanthropy.
Right now, “90% of [Lupus] patients are women,” Comenat observed, and as doctors become better educated on what Lupus is, and what it isn’t, it is more likely that younger people will be able to receive earlier diagnoses. Today, on average, she explained, it can take six doctors and four years for a patient to be given a correct diagnosis of Lupus. No definitive test yet exists to tell if Lupus is the cause of the patient’s often varied symptoms. “A lot of damage can be done to the body,” during four years, Comenat acknowledged. She believes that expanding outreach and awareness among an active, and possibly younger, audience can only “increase the chance of putting this on the radar.”
‘Everyone’s Treatment Is Different’
Kochanski volunteers with the Lupus Foundation, helping organize the Great Unknown Challenge. That is, when she can. She’s a young woman, just starting out on her life, and struggling, sometimes daily, with Lupus.
“One of the toughest things,” Kochanski said about being a Lupus patient, “it affects everyone so differently.” The way symptoms present, and the level of severity, varies from person to person. “Everyone is different,” Comenat agreed, “everyone’s treatment is different.” Symptoms patients experience, the treatments they take, and the ways Lupus presents in each person differs from one to another.
Lupus, according to Kochanski, “picks and chooses what it affects,” sometimes causing psoriasis, other times abusing the kidney, “and it can change.” This makes Lupus particularly hard to treat because symptoms can shift, and require a completely different treatment. Kochanski has heard, from other patients, about treatments that once worked and relieved symptoms suddenly ceasing to be effective, sometimes after 10 years.
“One of the cruel things,” Kochanski allowed, is the symptomatic treatment of Lupus. Medications and treatments taken by patients to assist with symptoms can lead to worse health problems, sometimes without relieving symptoms. Kochanski had been prescribed methotrexate, a chemotherapy drug, for her rheumatoid arthritis when her latest remission came on, and she gratefully avoided the toxin.
One symptom Kochanski finds common among Lupus patients she’s spoken with is the ‘drain’, as she calls it. “It’s a kind of tired,” she described, “It just sucks everything out of you. I wake up and felt like I’d been hit in the head.” One way she’s learned to deal with these days, Kochanski explained, is using ‘spoon theory.’ The theory states that all people have just so many ‘spoons’ with which to serve up their days. Kochanski knows she needs a certain number of spoons to attend to basic tasks – showering, eating, talking, etc. If she uses all her spoons attempting larger tasks, she has to know she can’t do others. “It means picking and choosing how you use your energy,” Kochanski observed.
“For me, in particular,” Kochanski said, “I’ve been lucky.” Listening to her stories of tests, treatments, daily struggles and profound impediments to her planning a near, and distant, future, however, few people might choose the word, ‘lucky.’ Kochanski, though, hasn’t had a lot of organ interactions, and she’s currently in remission. “I went from 13 medications to 3 in one year,” she observed joyfully.
‘Down The Rabbit Hole’
For ten years, since her mid-teens, Kochanski had experienced symptoms. She had a rash, felt epically tired, and got diagnosed with hyperthyroidism. After that, she got sore joints, and “I fell down the rabbit hole,” she said. She spiked high fevers – from 102 to 105 degrees – for over a month. Lupus “flares can be anesthesia induced,” Kochanski observed, and “I had two surgeries the year before,” her diagnosis, but without awareness of Lupus, no one had considered this factor – or warned her against surgery.
With no definitive test available for Lupus, Kochanski was told she needed to see a rheumatologist to test for factors, and to do an antinuclear antibodies (ANA) blood test. Getting an appointment with a rheumatologist is a test of patience; it can take many, many months. In the meantime, Kochanski received prescriptions to protect her against, well, whatever, and she got tested “for everything.” One series of tests involved visiting an infectious diseases expert (who found she had nothing infectious.) That doctor shared offices with a rheumatologist, and managed to get Kochanski in ‘early.’ (She waited only two months.)
“I was out of work for seven weeks,” Kochanski said. Fortunately, she had a good employer that allowed her a short-term disability absence. Also, “I’m lucky to have family here,” she explained, “I’ve been under my parents care.” For even after the fever broke Kochanski couldn’t get out of bed. She suffered from pathological atrophy, and she had to be pushed to go to work.
Once her medical team decided Kochanski had Lupus, they gave her steroids for the fever, and anti-malarial hydroxychloroquine to chill out her immune system. The fever is atypical for Lupus, but the treatment method was about right. “[Lupus] does not have a drug,” Comenat explained. Even one of the drugs most often prescribed, “Benlysta doesn’t work well for everyone,” she said.
“A lot of patients experience a flare,” Comenat said, and Kochanski added, “a flare can last a year, and so can remissions.” Each state can last weeks, months and years, leaving Lupus patients constantly on guard, waiting for symptoms to appear, and waiting for symptoms to abate. “Stress is a major trigger,” of flares, Kochanski observed, so worrying about flares, and potential symptoms, can cause flares, and worsen symptoms.
‘Get Really, Really Educated’
“I’m fairly new,” Kochanski said, and “I’ve tried to learn more about what makes a successful patient.” She talks to other patients, listens to her doctors, and studies what may make her chronic illness more manageable. After all, Kochanski can look forward to many decades of being a patient. “You definitely have to pay attention,” she said.
Her Lupus diagnosis has increased, “awareness of my body,” Kochanski explained, “if I’m tired, I sleep.” It takes a toll on relationships, with friends and family, as she may make plans but then change or cancel them at the last minute if she doesn’t have energy. “Lupus patients get really, really educated,” Comenat observed, “they have to know about anything,” that may affect their remission, or treat a flare.
As to her future, Kochanski will try to be smart. For instance, when seeking a new job she has focused on larger companies that can offer medical and family leave, and provide good medical insurance benefits. She racked up $150,000 in medical bills last year, but with her employer’s insurance, she paid only $10,000. “Most of my peers look at health care,” she acknowledged, “because of family planning,” while her needs have to be more immediate.
‘Lupus Never Leaves Entirely’
“It’s a balancing act,” Kochanski said, as even in remission, “[Lupus] never leaves entirely.” With considered care, regular exercise, scheduled vaccinations and a balanced diet, Kochanski hopes to increase her odds for remission. “I use vitamins, aromatherapy, oils,” Kochanski acknowledged, along with anything else she finds to boost her immune system and fight attackers. She also constantly asks, when considering accepting challenges or entering difficult situations, “is this stress going to cause a flare?”
“I will wake up and be stiff, and know to add a nap,” to her day, Kochanski explained, “I can’t push through it.” She’s had well-meaning friends, or family members, tell her to ‘push through it,’ but she can’t. Overtaxing herself risks another flare up, or a new symptom. “I want to work hard,” she said, and she must carefully balance work with rest. “In general,” Kochanski observed, “the people who thrive with [Lupus] are the ones who don’t ‘push through,’” but accept their limitations, and live within them.
Recently Kochanski got laid off from her job, and “I don’t have the energy to be worried about it,” she said. “This diagnosis has made me the most positive I’ve ever been,” as she’s found she can’t afford to be any other way.
Since 1977, Comenat said, “what the Lupus Foundation is trying to do in the Pacific Northwest is make a bit of noise.” Eventually, as people learn about Lupus, and funds increase for research – people may stop make silly comments to patients (Kochanski has also heard, ‘Can’t you just take a medication?’)
‘Not In My Head’
“The support side of it is huge,” Kochanski said, describing her family, friends, social media contacts, and efforts made by the Lupus Association to connect people. “I couldn’t do it alone,” she acknowledged. At a recent symposium hosted by the Lupus Foundation, many patients found great relief and validation in meeting others who shared a similar, although different, journey, and learning that their experience is ‘not in my head.’
After all, Lupus is a silent disease. “I look completely normal,” Kochanski said, understating how she actually looks like a healthy, beautiful, energetic woman. Yet she gets told, ‘you don’t look sick,’ by people who may mean well but misunderstand how a brave face is sometimes all a Lupus patient has left.
As a member of the Great Unknown Adventure planning committee, Kochanski looks forward to taking part and playing with the other participants. And she’ll be there, she said, “unless I wake up in a flare…”
Plan to be there, too, and take part in what will be a fun and full morning’s adventure, accessible for all! Registration remains open for the Great Unknown Challenge through May 17th. Find more information and details on the Lupus Foundation website – and please help spread the word about this event, to raise awareness of Lupus!
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