Measured Steps – Part Two
July 20, 2006
Part One | Part Two
By: Jean Johnson for Shoulder1
Carla Tannen stood alone in the stage light but not for long. It was the mid-1980s and on cue at the end of her remarks, her young daughter joined her. Petite, pixie-like Jessie with her long flaxen hair reaching up for her mother's arms and joining her in making a plea for research donations to ease the burden that those with systemic lupus erythematosus endure. "I said, 'I ask you to help me raise money now, so that no one ever has to raise money for Jessie,'” Tannen said. “That was really one of the more moving experiences I had back when I was a spokeswoman. There wasn't a dry eye in the house, not even mine."
To educate yourself, participate in research studies or simply to find support, the Lupus Foundation of America is a great resource. Visit www.lupus.org to learn more. Or call 800-558-0121 or 800-558-0231 (Spanish) for more information.
Testing for Lupus
According to the National Institutes of Health, tests to determine the presence of systemic lupus erythematosus manifestations may vary, but will include some of the following:
Antinuclear antibody (ANA) panel (a blood test) including anti-DNA and anti-Smith antibodies, with the latter two tests generally positive in lupus alone
Characteristic skin rash lesions
Chest X-ray showing pleuritis or pericarditis
Listening to the chest with a stethoscope to reveal heart friction rub or pleural friction rub
Urinalysis to show blood, casts (crystallized proteins), or protein in the urine
CBC (or complete blood count) showing a decrease in some cell types
kidney biopsy (tissue sample)
As Tannen observed in Part One of her story about living close to 30 years with systemic lupus, taking a proactive stance and getting involved in the Arthritis Foundation did much to get her out of her own world and into a community of both sufferers and philanthropists who support research.
"I served on the board for 10 years, becoming treasurer, vice president and president. I spoke at many groups about arthritis and served as a teaching model for medical students, putting a personal face on how lupus affects a patient. I also served on several national committees focused on finances and marketing, and traveled to Atlanta four times a year for meetings."
More, as a banker she had wealthy customers with whom she shared her health situation and philanthropic work. "They were wonderful, donating terrific items for the dinner auction, filling tables to come and spend money."
She also, after her physician succeeded in getting her symptoms under control as well as could be expected, made a decision to have baby – Jessie – a girl, born October 1980.
"I started getting some of my life back during the summer of 1979 and by January of 1980 really was feeling better. I would have good days and bad days – and still do – but it was nothing like back in the beginning where I had very little relief. Then there were some days when I could clean the house and do other wifely chores, but mostly it was learning to live with the pain – and deciding that 'even if it hurts, you go to do it. I realized that if I thought my life was over, it would be.
"They had me on an immune suppressant and an anti-inflammatory, but not things like oxycontin [a strong pain killer that cancer patients take]. Rather than simply masking pain, the rheumatologists try to deal with the factors that are causing the pain. But it wasn't just the meds, it was getting involved in the Arthritis Foundation and getting my attitude turned around that helped me start feeling better.”
Better enough to want a child even though it wasn't easy. Tannen's husband balked, and her physician said having children was not a good idea for lupus patients. Her physician told her she wouldn't be able to take her drugs, and thus the awful pain could return and her condition worsen.
There were also all manner of grim statistics the physician offered about miscarrying. Tannen's main question, though, was if the mother could carry the baby to term without drugs, would the child be normal? Would the baby be healthy?
The answer was affirmative.
"So if I can stand the pain, can I go without the drugs?" Yes, again. That was pretty much all it took. Within weeks Tannen, at the age of 30 and with a health condition that had pulled the rug out from under her not two years earlier, was expecting a baby.
"I took no drugs during the pregnancy and the lupus gave me no problems. Jessie was born in October, and I was even able to nurse her for six weeks until as the doctor predicted, I got worse and had to go back on the meds.
"There was the sleep factor that all new parents know about that kicked in, of course, but it was bearable. And once Jess got a little older, I was able to talk to her about how 'Mommy has to have her naps.'
"She was such a darling child. So sweet. Like the times on bad days when she'd turn her face up to me and ask if 'Mommy was brwoken?'
"Or others when I tried to get the naps that lupus patients need so desperately. I'd tell her to play out in the living room and I’d be up in an hour. But back she'd be in 10 minutes asking if it was time yet. I think at some level she was worried that her mother might slip away," Tannen said.
Also as Jessie got older, Tannen notes that her daughter helped her on her bad days and brought a gentle sense of humor to bear on her mother's disease that helped immeasurably.
"She'd come in and ask me for some money, and I'd try to reach around to my back pocket but be stopped by the pain," said Tannen. "She found a way to lighten the mood and teased about how it only hurt when I reached for my money. I so appreciated her attitude. That little touch of humor went such a long way. Nobody wants to be pitied, you know."
While Tannen is quick to acknowledge the support her family gave her for making her life with systemic lupus more bearable, she also reflects on what she has done over almost three decades to take a proactive role in managing her symptoms.
"Paying attention to how I am feeling and making sure I get enough sleep, exercising when I can – like walking up to the library or over to the hardware store – and keeping a positive attitude," Tannen said about the steps she takes on a daily basis to increase her chances of keeping pain in the background. "I don't fight the disease. I go with it. When my body tells me it's time to rest, I do. I know if I don't get enough sleep, I'll be paying for it for two days.
"Also, at one point I had two whole years symptom free and drug free – as well as another time off from the drugs for a year," she said. "So periodically you get a little sabbatical from the lupus."
That said, Tannen has had to endure other alarming indignities like hair loss common to lupus patients. She used to keep her hair long, but now, even though it has rebounded considerably from a bad period, she wears a short cut.
"It looks OK these days although I probably have a third less volume than I did. Also, when I have some idea or another for my hairdresser to try, he gently reminds me that we don't want to go there because then a couple spots that are on the thin side will show."
Pass Tannen at the farmer's market where you might see her picking up some early summer snow peas and northwest strawberries, and you wouldn't notice a thing. Her silver gray hair is wavy, and she's got a cut that looks smart on her willowy figure. She smiles at the portrayal and observes that the images we project can clearly be at odds from what we experience beneath the veneer.
Also, on the strong meds that she must take except in good years, she notes that, "I try to take as little as possible, and usually work closely with my rheumatologist and get blood work done quarterly.
"Now, as I've learned to manage my own disease, though, from time to time I'll experiment and take less meds. I can tell in two weeks whether or not I can reduce my dosages," she said. "The reason I do is that one of the drugs I take can lead to blindness because it can build up in the cornea. So we watch that closely, with eye exams every six months – and me backing off on the drug for a while if there are any signs of problems."
Tannen also sees her rheumatologist periodically to have her kidney function checked. "That's the main thing they want to watch on lupus is your kidney function. Your kidneys can kill you on this," she said. "But 24 hour urine tests are so inconvenient, I've gotten so that if I'm on an even keel and not hurting, I figure I can let it go a little bit more than I used to."
Almost 30 years of living with systemic lupus. Close to a third of a century managing a disease that when it came crashing down on her young shoulders in her late 20s had Tannen thinking that her life was over – or at the very least that it would end up in sad shambles.
Clearly Carla Tannen has earned some carte blanche. Obviously she has used her intelligence to find common sense approaches to dealing with her fate. And certainly she has taken the measured steps her life required of her.
We at Shoulder1 would like to doff our hats. Courage. Going the long haul when the path is tortuous at times. Making sweet, sweet lemonade from bitter, even terrifying fruit.
None of this is easily accomplished. All of it makes for character. For maturity. For humility. This ability to stand in the flame of life and endure…the willingness to take measured steps.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases provides the following information as a primer on lupus and the current research focused on the disease.
What is Lupus?
"Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems."
Is there a cure?
"At present, there is no cure for lupus. However, lupus can be effectively treated with drugs, and most people with the disease can lead active, healthy lives. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission.
"Understanding how to prevent flares and how to treat them when they do occur helps people with lupus maintain better health. Intense research is underway, and scientists funded by the NIH are continuing to make great strides in understanding the disease, which may ultimately lead to a cure."
Who gets lupus and why?
"Two of the major questions researchers are studying are who gets lupus and why. We know that many more women than men have lupus. Lupus is three times more common in African American women than in Caucasian women and is also more common in women of Hispanic, Asian, and Native American descent. In addition, lupus can run in families, but the risk that a child or a brother or sister of a patient will also have lupus is still quite low. It is difficult to estimate how many people in the United States have the disease because its symptoms vary widely and its onset is often hard to pinpoint."
Last updated: 20-Jul-06