"Who Knew?" by Julie A. Newell - Revisited

Going through some more papers last night...MY God we accumulated papers in 35 years, with both of us being so active in unions and the "good fight"!

Anyway, ran across a bigger and better sample of what "Who Knew?" would have been like if Julie Newell had chosen to "sit it out" and tell her story.


(Note: Julie's story did not actually make the final cut to be published in the LHJ (Ladies Home Journal)...their loss. An account of Julie's struggle did later appear in "Arthritis Today".)

Like millions of other American women, chronic illness sneaked up on freelance writer Julie Newell 12 years ago. She had never even heard the word Lupus before its ravaging symptoms overtook her in 1985. Her struggle to cope with a disease that primarily strikes women is a lesson in vigilance, positive thinking and the power of love and support. During October, which is National Lupus Awareness Month, Newell shares her story with LHJ readers.


Twelve years ago this summer, I awoke one morning feeling as if I had suddenly aged fifty years. Every muscle in my body ached, every joint felt as if it was on fire. I couldn't get out of bed unassisted. My husband literally had to get me up, stand me in the shower and comb my hair!

I was thirty-two years old, and an active, outgoing wife, daughter and sister. As the eldest daughter in a family of ten children, Iíd had to be a second mother to most of my siblings, so I understood stress and hard work from an early age. My husband Ron and I had been happily married for twelve years. He is a high school math and social studies teacher, and I was a school secretary working in the same building throughout our marriage. In fact, we had met during his first year of teaching, when I was hired as school secretary right after high school.

During that summer of 1985, we had planned a driving vacation in the western United States. One advantage of working together at a school was that we were able to take long vacations together during the summer, so we looked forward to our trip to the Grand Canyon and Las Vegas with great anticipation. Being something of a fitness-buff, I started spending more time at the gym, preparing for the hiking and unexpected exercise we would be getting on this vacation. Each day, I took long walks in the sunshine, developing my stamina for the trip out West.

I had no way of knowing that my daily routine was killing me.

Something, probably my exposure to sunlight for long periods of time, had apparently triggered my first full-scale flare-up of lupus, a disease Iíd never even heard of, but which would take me on a journey of chronic pain unlike anything I had ever experienced in my life.

Lupus, which in Latin means ďwolf,Ē is unpredictable and debilitating - and predatory, like the beast for which it is named. Signs of the disease appear and disappear, sometimes for no apparent reason. Because lupus assumes so many different forms, getting the right diagnosis may take time, and can be very frustrating.

I want to share my story with you, and what my personal experience has been in living with the disease.

After waking on June l2, 1985, feeling feverish and stiff all over, I decided Iíd merely been doing too much weightlifting and too many sit-ups. I was sure Iíd be fine in a few days, so I decided to take it easy and let my aching joints recover.

When the pain didnít lessen after a few days (in fact, I felt worse and worse), I made another self-diagnosis by deciding that I needed to resume exercise, because resting my aching joints hadnít helped. I forced myself to continue the daily walks, though every step was agony. I started to think I might have somehow pinched a nerve in my neck or even have inadvertently broken a vertebrae. My shoulders and neck felt like they were in a vice. I was so stiff, I couldn't turn just my head - I had to turn my entire body. There was nausea, joint and muscular pain and the ever-present fever, but my joints weren't particularly swollen. I had also developed a rash on my face, chest and arms that was red, swollen, and painful. Though exhausted, I couldn't sleep because of the pain, and was completely fatigued.

There was no comfortable way to sit, stand or even lie down that would ease the strain on my back, neck, shoulders and hips. My hands hurt too much to hold a knife and fork, so my husband had to feed me. My days soon became a vicious cycle of pain, depression and fear.

Iíd been in generally good health throughout my life, so I ascribed most of my symptoms to a possible summer "bug". Still, my condition didnít seem to respond to painkillers like aspirin or ibuprofen. After several days of unrelenting pain, I gave in. I made an appointment to see my local doctor, a general practitioner whom I really trusted. He took one look at me and ordered blood work and a series of tests to determine exactly what was wrong.

He told me that he did NOT think I had somehow broken my neck, but that he needed more information to make a diagnosis. A nurse, thinking she was being helpful, told me that the diagnostic tests Iíd be taking were used to determine either muscular dystrophy, multiple sclerosis or lupus (what a choice!). She tut-tutted and shook her head in sympathy. That really helped my state of mind! I went home totally depressed, to brood and worry, still not sure exactly why I was in such pain but frightened I might be dying.

Because we had already planned and paid for our vacation, we decided to go ahead with it. In my own mind, I had begun to believe I was near death. I wanted to go because I thought there would be no more vacations - no more time for us to be alone together before the end. There just didnít seem to be any other explanation for the excruciating pain with which I was struggling.

We flew to Las Vegas, and I kept as much of my misery as possible to myself. I didn't want to frighten Ron any more than he already was. Looking back, though, I remember the fear in his eyes, the helplessness he couldn't hide as he watched me struggle to rise each day after a sleepless night. He saw me crawl in and out of the rental car as I made weak attempts at sight-seeing, and he watched me suffer nausea and lose weight as I fought to keep going. Even though we were failing miserably, because we loved each other we kept trying to deny the truth.

Something was dreadfully wrong with me.

Because Iíd never heard of lupus, I couldnít know that my exposure to the desert sun was worsening my symptoms. I believed that the heat of the sun would help loosen up my aching body, and I couldn't understand why I felt progressively worse each time I spent hours soaking up sunlight. The sun was poison to me, and I was, without knowing it, committing suicide.

After days of unremitting pain, depression, and fatigue, I finally asked my husband to take me home, so I could "die in my own bed".

Back at home, there was an urgent message waiting for me. My doctor wanted to see me in his office immediately. My visit confirmed that the anti-nuclear antibodies (ANA) test Iíd taken showed evidence of lupus, but he wanted to refer me to a specialist, a rheumatologist who specialized in the disorder, before a final diagnosis could be made. The rheumatologist confirmed the diagnosis: I had SLE or systemic lupus erythematosis, the most deadly of the three forms of lupus (discoid and drug-induced lupus are the other two). I finally had an answer, but my journey was just beginning.

Unfortunately, there wasn't much information available to explain the disease. I needed to understand what was happening to my body, and so my personal odyssey into the world of immune disorders began.

Lupus is an autoimmune disorder, a disease in which a person's antibodies attack the connective tissue and vital organs. When functioning normally, the body's immune system makes proteins called a antibodies to protect the body against viruses, bacteria and other foreign materials. These foreign materials are called antigens. In an autoimmune disorder like lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues. It begins to make antibodies directed against itself.

In other words, your body begins to destroy itself.

Symptoms of lupus illness include achy joints (arthralgia), fever over 100 degrees F, prolonged or extreme fatigue, arthritis (swollen joints), skin rashes, kidney involvement, pain in the chest or pleurisy, sun or light sensitivity (photosensitivity) and is often distinguished by a butterfly-shaped rash across the cheeks and nose. Scientists donít really know why, but being exposed to ultraviolet rays can aggravate the disease, causing it to flare up.

Other symptoms may include hair loss, seizures, mouth or nose ulcers and Raynaud's phenomenon (fingers turning white and/or blue in the cold).

During the past 12 years, my doctors have tried many different drug therapies to combat the symptoms I display, and Iíve had them all at one time or another! I started by taking NSAIDS (Non-Steroidal Anti-Inflammatory Drugs), beginning with massive dosages of ibuprofen. When that had little effect on the pain, we tried naproxen. This seemed promising at first, but the pain soon outstripped any benefits of this medication.

Before going to steroids, my doctor wanted to try the anti-malarial hydroxychloroquine (Plaquenil). At first, this really helped lessen the debilitating joint and muscular pain, but because this drug can affect the eyes, I had to have regularly scheduled opthalmologists' visits. A year later, after developing a hole in one retina, I had to discontinue that drug therapy.

That left me with a difficult choice: I could take steroids with their negative side effects (weight gain, rounded or "moon" face, acne, easy bruising, osteoporosis, high blood pressure, cataracts, etc.) but with a proven track record of easing the pain, or go back to the dubious pain relief of ibuprofen. Because I needed to work (both financially and emotionally), I opted for steroids (prednisone).

Iíll never forget one of the first things the doctors told me. They insisted that I needed to remember that my case of lupus is MY CASE of lupus: in other words, I shouldnít be frightened by the literature or by other negative outcomes. Each lupus sufferer is unique. Not everyone who contracts lupus receives an automatic death sentence (even though the pain and depression can make you believe otherwise). My doctors' aim was to treat each symptom as it appeared, and to be as vigilant as possible in keeping ahead of the disease. My decision was to become as informed as I possibly could about what was happening to my body. This wasn't easy, but I found that the more I knew about this disease, the more I could stay on top of what was happening with my life. I needed that small measure of control over my illness.

No one knows what triggered my attack that summer, even though I now believe that the stress of work combined with the sudden increase in exercise and exposure to sunlight might have precipitated the flare-up. No one knows why I developed lupus, when there are nine other siblings in my family who didn't have the disease.

Although lupus is known to occur within families, there is no known gene or genes which are thought to cause the illness. Only 10 -15% of lupus patients will have a close relative (parent or sibling) who already has or may develop lupus, according to the Lupus Foundation of America.

Statistics show that only about 5% of the children born to individuals with lupus will develop the illness. My husband and I had one child - a daughter who was still-born after an otherwise-normal pregnancy. After my lupus was diagnosed, doctors advised that we not try again because of the state of my health. I live with the knowledge that this disease can affect childbirth, and I also live with the constant questions of whether my lupus caused my otherwise perfectly healthy baby to die. We don't know, but the questions don't stop because there are no answers.

There have been many times when Iíve been tempted to feel martyred, or to ask, ďWhy Me?Ē Especially during a bout of the depression that is a side product of lupus, or when yet another internal organ decides to act up. I have fibrocystic disease as a result (or as a part of) my lupus, and I have endured 5 abdominal surgeries, 3 breast lumpectomies and back surgery since my initial diagnosis.

Iíve developed high blood pressure and gained 65 pounds from the steroids I take to combat this disease. I have learned to endure the hurtful, but well-meaning jokes of so-called friends who chide me for "eating too well" when they see me infrequently. It takes too much energy and time to bother to explain the side-effects of the steroids and other drugs I have taken. I have better things to do with my life.

Still, itís so unpredictable. I can be sailing along, feeling pretty well, and the very next day, I canít get out of bed. Iím often so exhausted I canít dress myself, and thereís no way I can cook a meal or clean my house. I am blessed to have a husband who understands and accepts that there will be times when I canít get up, or times when there will be no hot meal. Ron has learned to ignore a house that is not always spic-and-span, because he loves me. We have many good friends who help, and we now have someone come in once a week to help with laundry and do the mopping and heavy cleaning.

Ron has also learned to help make sure I get as much rest as possible, and avoid stress (a triggering factor in flares). When I am in too much pain to get up, he calls in sick for me, and screens the phone calls and visitors. Those are the times when he makes sure I eat a nutritious meal and take my medicine. I worry about the stress this puts on him, but he assures me that this is part of what he meant when he swore to love me "in sickness and in health"! I am blessed to have him as my partner and lover for the past twenty-four years.

Through all the pain, I know there is nothing I can do but endure. Each time my lupus flares, I wonder if this will be the time when my kidneys fail or my eyes stop working or my blood pressure shoots sky-high. Each time, though, through the prayers of my family and friends, through the love of my husband, my parents and my siblings, I have survived.

I feel blessed to have caring, sympathetic doctors. One of the first things my rheumatologist told me was, "try to ignore people who say because you don't look bad, you must not feel bad. People who say you must not have pain because your joints are not misshapen, don't understand lupus. Your pain, your fevers and your depressions are a reality. We just have to deal with it realistically and promptly.Ē That understanding on his part may have saved my life.

But I have my moments of feeling great! Although lupus is a chronic disease, having it doesn't mean you can't live a full life. Chronic diseases can be controlled through proper treatment. When my lupus is in temporary remission, I feel that I can lick the world. When I feel well, I believe nothing can hold me down, and I forget about the painful times, the surgeries and the eye problems. My main problem is learning how to pace myself. I want to do it all, because I know that someday soon, I won't be able to get out of bed.

Thatís why I am so active in my job. Iím president of my secretarial union, an active member of the state bargaining union (the Illinois Education Association). I try to participate (as my energy level holds up) in local volunteer organizations, and I work as a business consultant, helping to organize offices more efficiently.

Nothing makes you an expert on efficiency better than the fear of losing time. When you think there's not a lot of it, it becomes so precious!

And I live! I enjoy each day and I love my husband and my family more each day. I have been married to Ron for almost twenty-five years, and I am still madly in love with him! In this day and age, if that's not a blessing, I don't know what is!

Having lupus has taught me the hard way that life is too short for petty things. I have no time for holding grudges and keeping scores, for getting even. I can get angry, but I never let it get to be a way of life. Every minute spent feeling angry is a minute when you cannot feel love; and love is too precious to waste. I still have a lot of love to spread around. I plan on living for many, many more years. With vigilance and care, that is possible. I appreciate every minute of every day of my life, and that is a real blessing!


Footnote: I probably knew this at one point in time, but I had forgotten. If you read the "intro", it says that October is "Lupus Awareness Month".

How ironic...

Although Julie's article focused on her diagnosis, as it turned out, her MAJOR lupus flare occurred on OCTOBER 15, 1997...and she passed away on OCTOBER 19, 2007.