Measured Steps – A Life with Systemic Lupus
July 06, 2006
By: Jean Johnson for Shoulder1
It started innocently enough – the symptoms of systemic lupus erythematosus, an exceptionally debilitating form of arthritis that can be so painful the thought of getting out of bed can make a grown woman cry.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) underscores that "lupus can be effectively treated with drugs, and most people with the disease can lead active, healthy lives."
The first step to effectively treating lupus is to diagnose the disease. NIAMS also offers the following common symptoms of lupus:
Painful or swollen joints and muscle pain
Red rashes, most commonly on the face
Chest pain upon deep breathing
Unusual loss of hair
Pale or purple fingers or toes from cold or stress (Raynaud's phenomenon)
Sensitivity to the sun
Swelling in legs or around eyes
To get involved in the Arthritis Foundation visit www.arthritis.org
For Carla Tannen, the first sign was one of those home remodeling projects that get women using their hands more aggressively than they might otherwise. The year was 1978. The place: Mercer Island, a nice suburb of Seattle where Tannen and her husband had just purchased a house to settle into. The project? Coping out the new curved baseboards for the living room and hallways.
"My hands hurt terribly," Tannen said, "and after a week when the pain didn't go away, my husband made me go to the doctor about it."
She was 29 at the time. The couple had married five years earlier, first residing in Ohio before following the environmental, back-to-nature leanings of their generation and taking a year off for an extended back country trip through the American West.
"I had lupus before the 1978 diagnosis, I think. Not systemic lupus like I have now, but discoid lupus where you get rashes on your skin and have serious fatigue. The sun can trigger it, and when I visited my family in Arizona I noticed I got these bumps on my skin," Tannen said.
She also remembers extreme fatigue and explains that she'd come home from her morning job at the newspaper so exhausted that many times she'd lie down for a nap that lasted clear through the afternoon until her husband got home from work.
"I just thought I wasn't getting enough sleep. But what was interesting to me is the year we 'ran away from home' on our backpacking trip, I was symptom free. Not tired at all. I could also tolerate the sun without any problems," she said. "I credit it to all that outdoor life and good exercise – and no stress."
However real life back in late-20th century America, once they returned from the cool trout streams and expansive vistas of sublime mountain and canyon country, was plenty of fast-lane stress in urban habitation. Whether or not that was the trigger, when Tannen visited her physician and they ran a battery of tests, she discovered that she most likely had systemic lupus. Not particularly conversant about this form of arthritis with the strange sounding name, she initially distanced herself from the full weight of the diagnosis and let a naïveté insulate her from the harsh reality.
"I remember being relieved that it was probably just arthritis instead of something they held telethons for. I knew about arthritis – in commercials the pretty wife clutched her painful hands, took a couple aspirins, fastened on her pearls, and went off to the dance with her husband with a big smile," she said with a 'no problem' shrug of her shoulders. "I could do that!"
Events that Tannen would face over the course of the following several years, however, where anything but an idealistic version of a Pollyanna rising to any occasion and trooping gamely along. Rather, on more days than not, the frightening decrepitude that overtook her body left Tannen with so little energy that even considering pearls was out of the picture. Still, while she may have wanted to, in her words, “curl up and die” initially from the horror, the pragmatism that has marked her life of measured steps began to give ballast to her fear.
"I mentioned my diagnosis discretely to one of my co-workers, and her husband happened to be a resident in lupus research at Virginia Mason, a teaching hospital in Seattle," said Tannen. "She told me lupus was a very serious disease, and I should get to a rheumatologist right away, which I did. By then, the pain wasn't just in my hands but all over. My general practitioner had me taking high aspirin doses which didn't really help and instead gave me ringing in my ears."
Even after Tannen met with a specialist, it was a long haul. "I went through a year with my rheumatologist trying various medicines at various doses until I finally got more comfortable. Different meds work for different patients in different doses, and you want to start with the meds that have the least side effects, and in the smallest doses, and then work up," she said. "So finding the right one can take some time."
"It was a devastatingly depressing time for me. I went through all the stages – shock, denial, bargaining. 'Why me?' 'What did I do to deserve this?' I hurt so bad all over. My feet felt like I was walking with broken glass for bones. I couldn't lift my arms to brush my teeth or comb my hair."
That was assuming Tannen had even made it out of bed and was able to get dressed, two activities of daily living that during this initial nightmare, her husband helped her with on many occasions. She can't say enough about how the support of her husband did to help her through the first years of living with systemic lupus. Indeed, with his encouragement, she was able to accomplish the remarkable feat of continuing to work as a banker in downtown Seattle – even using the public transit system for her commute.
"My husband would say, 'Aw, come on. You know you'll feel better once you're up and moving. He would lift me out of bed, help me dress, and brush my hair. Then he’d get me to the bus stop.
"When it arrived, I would mount the stairs like a frail old lady." On the other end of the ride, Tannen remembers what seemed like an interminably long city block. Navigating the distance was a Herculean feat, and one she marked by stopping every few paces to deal with the tears that accompanied her torment.
Think about it. Not even 30 and your body degrading in a matter of weeks right before your eyes. Going from 30 to 80 just like that and not knowing if things would ever be different. That, combined with debilitating pain.
Aside from the pain is the fear. Fear of not being able to work. Fear over your marriage and whether it could stand the strain. Fear of turning your husband away because even hugs make you wince.
Finally, fear of death. Fear that you would not be in the 25 percent of those, who back in 1978 thought they would live beyond10 years. All in all, not a fun time at all. Not a time when a soul could find much in the way of peace to hang onto.
To give us an idea of how horribly her mobility was impaired during this time, Tannen provides a poignant description how she learned to brush her teeth on her own. "I finally figured out how to brush my teeth by myself by kneeling in front of the sink, propping my arm up on the counter and moving my head up and down on the toothbrush. A victory!" she said with more pluck in her tone than seems possible – then or now.
Then there was the work scene. "I was constantly fatigued. Fell asleep right at my desk at work (even drooling on files), in meetings – you name it." She also remembers her eyes filling with tears whenever her phone would ring. "It was so horrible. I had to prop my left elbow up on my desk with my right hand, then let it fall down on the receiver and use my right hand to help lift it to my ear," she said. "I mean, it was awful."
Awful. The word hardly seems to do justice to what it must be like to be imprisoned in a young body that isn't functioning well enough to grab the phone or brush and floss. Beyond what one can imagine if they haven't experienced it. But then, what word would describe an experience like this? That must be why we have poets.
In any event, bankers clearly are more practical, down to earth types, so Tannen was reluctant to share her diagnosis with her employer and colleagues. "It was about six months before I could make myself tell anyone at work other than my one confidant about my condition. I was really ashamed of my disease, so I tried to hide it from everybody – did things like wait until everyone left at night so they wouldn't see me struggling to put my coat on," Tannen said. "But finally it got so that I couldn't go on. I discussed things with Personnel, and they gave me a key to the first aid room so I could nap during my lunch hour. That really helped."
Tannen also told her co-workers about her situation. "It's not like it was all I talked about, but I made people aware. My feminism went right out the door. If someone was willing to open the door, help me on with my coat, or carry files for me, I was truly grateful."
She found, of course, that after sharing her secret people were more than happy to lend a hand – and that there was an unexpected consequence as well. "Along with everyone being very supportive, a customer who was on the board of the Arthritis Foundation invited my husband and me to a dinner auction."
"I credit that involvement with a turn around in my attitude and outlook, and the course of my disease. I went from being a helpless victim ready to give up, to a person who was going to fight this for the sake of others."
Part Two of this story will trace how Carla Tannen's leadership positions in the Arthritis Foundation, her supportive family, and her knowledgeable physician enabled her to better manage her symptoms so that the bad days come less and less often, and life, although marked in carefully measured steps, brings more joy than she ever expected back in the dark days of 1978.
Last updated: 06-Jul-06