June 3, 2020
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Living with Lupus Erythematosus

By: Irene Hilsendager
June 28, 2019

I am writing about lupus this week as I have encountered people that have no idea what lupus is. I have been told you don’t look ill, what is it and is it contagious? I may not look sick, but you don’t know how I feel on the inside. Some days I am hurting so bad that I don’t want to be touched. Skin burns, muscles cramp and joints sometimes just won’t work.  Having lived with this since 1975, there are some good days, but more hurtful days than the good. No, lupus is not contagious. I get very annoyed when people talk about being contagious. Energy is sometimes at a minus ten. I could sink through the floor and not know it.

Lupus Erythematosus is a chronic inflammatory disorder of the connective tissues and can appear in two forms. Discoid lupus erythematosus which affects the skin and systemic lupus erythematosus which usually affects multiple organ systems, as well as the skin and can be fatal. I have the systemic lupus and it has been hanging over my head for forty-four years come July 13. Medical doctors have told me I am one of the very lucky ones. I have known people that were 14 years old and many in their forties and have unfortunately passed away due to renal failure or infections. It is very easy to pick up infections even from just a simple scratch. The fourteen-year old boy died from having a blister on his heel from shoes that did not fit properly. Some of my boo boos take up to a month to heal when it should only take a week.

The exact cause of systemic lupus erythematosus (SLE) remains a mystery, but three theories have been postulated. The first holds the SLE is an abnormal reaction of the body to its own tissues, caused by a breakdown in the autoimmune system. According to theory, the body produces antibodies, such as antinuclear antibody (ANA) which form antigen-antibody complexes and “poison” cells, suppressing the body’s normal immunity.

The second theory suggests that certain predisposing factors make a person susceptible to SLE. Physical or mental stress, streptococcal or viral infections, exposure to sunlight or ultraviolet light, immunization and pregnancy may all affect the development of this disease. Because SLE has been found in certain families for several generations, genetic predisposition is also suspected. Stress is what flairs up my lupus and I have learned to stay calm most days. So if I don’t speak sometime when you meet me on the street, it is because I am concentrating on myself.

The third theory proposes that SLE may be triggered or aggravated by certain drugs such as procainamide, hydralazine, anticonvulsants and less frequently penicillin or sulfa drugs. I am very allergic to medicine and dyes so having to take something for migraines is extremely difficult. Usually the emergency room is my relief.

There are many signs and diagnosing SLE is far from easy. SLE often mimics other diseases and sometimes symptoms may be vague and vary greatly from patient to patient.  When going to the doctor for two years and always being told that it was all in my head-it sure was but the body was hurting also. I had to find a doctor that had just been out of medical school.

Some symptoms and signs of SLE include non-deforming arthritis, a charactistic “butterfly rash” and sensitive to sun. Joints may show redness, warmth, tenderness and muscle weakness. The most distinctive feature of SLE is the “butterfly rash” that appears in a malar distribution across the nose and cheeks. This is the most terrible rash any person can have on their face. It started on the bridge of my nose and spread to under the chin. It was disturbing to even have to look at it with open sores and oozing skin eruptions. I suffered eight months with disgust. I did not go out in public due to the stares of other people. It itched, it was a brutal hurt and it became worse when water touched it. After months of crying and feeling sorry for myself, I took a stiff nail brush, got into the shower and absolutely scrubbed my face until it bled. But after that, my skin started to heal but it took me 30 years to get rid of all of the scars-I didn’t get rid of them the fish scale like just shrunk.  Some other symptoms are oral ulcerations, alopecia, pleuritic or pericarditis, Raynaud’s phenomenon, convulsions or psychoses. 

Other symptoms of SLE includes aching, malaise, fatigue, low-grade or spiking fever, chills, anorexia and weight loss.  Sometimes you have enlarged lymph nodes, abdominal pain, nausea, vomiting, diarrhea and constipation. Women may experience irregular menstrual periods or no period at all. I have to be warm in the winter and cool in the summer as heat aggravates the lupus. I am very fatigued at times and there is never a morning I don’t get up and hurt.

About 50 percent of SLE patients develop signs of cardiopulmonary abnormalities such as pleuritic, pericarditis and dyspnea. Sometimes pneumonia may occur. Headaches, irritability and depression are especially common.

After years of being bedridden or on crutches, I decided life had to be better. I changed my diet, I take supplements, stay active and keep my brain running at all times. I never feel sorry for myself, as I know there are others worse off than myself and volunteer to make the community a better place.