Sylvia Higgins Memorial Essay - General Category Winner, 2005
Martha Sander of Saskatoon, wrote her poignant essay describing the experience of having a daughter who developed lupus and all that it means to a mother.
The “L” Disease That We Can Live With
I never thought I would be relieved when my daughter Jennifer received a positive diagnosis for lupus. But when it comes to the “L” diseases and they ruled out leukemia, we knew we had a disease that we could learn to live with. That was the extent of our lupus knowledge a year ago. By the time Jennifer was finally admitted to the hospital, she felt like she was dying; after the diagnosis she had to learn to live with the disease. Since we, her family, were her main support system we also had to learn to live with lupus.
When did this disease first affect Jennifer? Was it maybe fifteen years ago when we thought that she had juvenile arthritis or was it only last fall when she had her first and hopefully only major flare up?
Her medical history was very similar to her three siblings; yet something must have been different. Jennifer, a female Caucasian, was born June 12, 1976 in Calgary, Alberta at 39 weeks gestation. After an uneventful pregnancy, speedy labour and delivery, she weighed in at 6 lbs., 10 ounces, with normal reactions and a zest for life. She had no childhood illnesses, hospital stays or surgeries. Other than the odd stomach flu, ear infection or cold she was the healthy first born with three younger sisters. She had all of the childhood immunizations available at the time. At three years of age she moved with her family to Saskatoon, Saskatchewan.
Jennifer became very active in all sports in elementary school and it wasn’t until the end of Grade VIII that she started experiencing joint pain in her knees. The pain settled down over the summer holidays but returned with a vengeance when she started high school. We blamed it on the several flights of stairs she had to go up and down several times a day. Her doctor referred to her joint pain as growing pains. We insisted that you don’t come home from school and apply ice to your knees everyday for normal growing pains. Jennifer was referred to a rheumatologist . He was thorough and tested her eyes and did a biopsy on her kidneys to make sure that was all okay there.
The diagnosis was juvenile rheumatoid arthritis and not conclusive for lupus. The remedy was anti-inflammatory pills and “live with it”. We put the “L” word out of our minds and Jennifer concentrated on keeping her joint pain under control. Both of her Grandmothers suffered with arthritic knees so she felt she had inherited that from them. She remained active in sports and went on to her career as a rehabilitative worker. At this point her joint pain seemed very much weather related and she always predicted when a windy day was on the horizon.
Jennifer moved to Ottawa in the fall of 2001. After experiencing a very grey, rainy few months her joint pain flared up again. This time she tried flax seed oil and had success in getting it under control with the return of sunshine and regular exercise. We knew the effect of stress on arthritis so it wasn’t surprising that the joint pain had returned. The first years in Ottawa were stressful for her getting used to the city, a new job, being far away from her family and eventually a divorce.
Finally feeling stress free she was relaxed and happy when she visited us in August of 2004. She mentioned that she had been experiencing inflammation all summer but I didn’t really understand what she meant. She had been working at a summer camp for special needs children for a few weeks and while there she experienced a rash. Everyone was talking about “fifth disease”, which comes with a fever and rash so she assumed that was what she had caught. One day she showed me her finger joint which was red and swollen; she told me that it happened to different joints at different times. I told her it was time to find a rheumatologist in Ottawa as it had been years since she had seen one. The only thing that entered my mind at that time was rheumatoid arthritis and not once did I think of the “L” word. Were we in denial or were we just ignorant because we had never been told what symptoms to watch for?
We all got back to our fall routines. Jennifer was back at her job with her special needs students. She started talking about a scaly rash that had developed on her chest, after her last day at the beach. She had sunburned a bit and thought it was a sunburn that wasn’t healing. We laughed about it, but if we had read any of the lupus symptoms we would have seen it as a red flag of warning.
After a week at school Jennifer caught a “virus” because you know how many germs there are in a school environment. She had an annual physical booked with her regular doctor, in October, so she saw no need to see her earlier even though her scaly rash wasn’t healing. Now the virus had added a nasty cough and after a couple weeks of that she could barely talk to me on the phone because she would start coughing.
Jennifer finally stopped at a walk-in clinic for her cough and the doctor prescribed antibiotics without doing a history check or Jennifer showing her the scaly rash. So, as far as she was concerned, she was on the mend. Several days later she went back to the same doctor because the antibiotics were bothering her stomach so much she couldn’t even eat the soup that had become her diet. She went home with another prescription for antibiotics and this time she was determined to get better. When she looks back now she admits she was in total denial and should have known what was happening to her. She felt worse day after day and finally, after passing out, she told her friend to take her to emergency.
The admitting person told her, “Jennifer you are not making sense. Are you anorexic?” Jennifer stated, “No, I am not anorexic but I have not been able to eat for a month and I don’t know why. I am probably not making sense because I feel like I am slowly dying and I am not leaving here until you find out what is wrong with me.”
She told me later that she was very scared that they would send her home and she would die. Because of the very erratic blood tests she was immediately admitted, placed on oxygen, antibiotics and started on prednisone for the inflammation which was found to be everywhere.
Although I have heard many people curse prednisone, we were only thankful that it was invented and readily available for Jennifer. When she told me that it was not leukemia and they were testing for lupus I was relieved, but very curious, so I finally starting reading about the symptoms, the remedies and how to live with this disease.
The lung specialist at the hospital has told her, at every checkup, that she was a very sick lady when she was admitted and another week her poor oxygen starved organs would have started shutting down.
I was at her hospital bed as soon as I was able. As soon as I saw her with her butterfly rash across the bridge of her nose I could have diagnosed lupus then and there, from what I had read in the past few days. The scaly rash on her chest was another so visible sign that we did not recognize. She responded well to treatment and the cough and rashes disappeared as if they had never been there. Her lungs cleared with no permanent damage and the other organs returned to normal.
It is almost a year since she first showed signs of the flare up and she is doing remarkably well with her medical team and her naturopath. They weaned her of prednisone in three months but she continues to take vitamin supplements and flax seed oil for optimum health.
She told me last week, “Mom, I feel better than I have in years and I have my vitality back.” She continues to work fulltime, play soccer and slow pitch so I know she is feeling great.
We, as parents, still have many questions about lupus, but Jennifer warns, “Mom, don’t read too much about it because it can depress you if you read all about the worse case scenarios.”
I did not reply, “Jennifer, you were one of the worst cases and look at you now. There is a way to live with it and you are one of the lucky lupus patients who have managed to keep yourself healthy in spite of it.”
I can’t even remember the medical term for lupus. It is something I can never remember and pronounce so I have broken it down to simple words.
L is for the love and support people need when they are diagnosed with lupus.
U is for the understanding people need when lupus has them down physically and emotionally.
P is for the patience people need when they are trying to find answers about lupus.
U is for the universal need to find a cause and cure for lupus.
S is for the satisfaction we will feel when we find a cause and discover the cure.