Diary of a Mad Lupus Patient

By J.H. Johnson

Diagnosed during her high school years, the author decided to keep a personal diary of her confusion, fear, and challenges of being diagnosed with Lupus. Lupus, also known as Systemic Lupus Erythematosus (SLE) is a disease that can affect many different body systems, including the joints, skin, kidneys, blood cells, heart, and lungs. Lupus is more common in women than in men. Research continues to be done on finding a cure for this life-threatening illness. This diary records thoughts and feelings for being diagnosed, to understanding and accepting the reality of living life with Lupus.

• Language: English
• Publisher: J.H. Johnson
• Release date: Mar 25, 2015
• ISBN: 9780988881051

Book preview

During this time, I was in my last year of high school. While all my friends were enjoying fun activities, I was homebound for my entire senior year. And worst of all, my hair was falling out for no reason at all. Scabs formed on the top of my head. I had a high fever that I couldn’t explain. I felt weak all the time. At times, I couldn’t even pick up a glass of water. My skin was constantly dry. Patches of dry skin could not be remedied with anything I tried. My mother would have to help me bathe and dress myself. The many tests I had to take seemed insurmountable.

The various physicians I went to see did not know what was wrong with me. They diagnosed me with various illnesses. Each doctor’s appointment awarded me a new Girl Scout badge. After various different appointments, I was said to have had rheumatoid arthritis, the flu, pneumonia, and mononucleosis. I was frustrated and confused. And all of the medicine I had to take made me feel like a walking guinea pig. A patient physician finally diagnosed me with lupus. At the insistence of this doctor, I started jotting down short notes in a little spiral notebook. No particular format, no structure to sentences were used, because there was no structure to my thoughts. I was attempting to accept my diagnosis.

Thursday, October 7, 1993

Diagnosed with Systemic Lupus Erythematous- SLE; also known as lupus.

Tuesday, April 19, 1994

Increase to 60mg Prednisone

1 Plaquenil, 200mg

1 Vasotec, 10mg

3 Zantac, 150mg

Start Carafate, 500mg

Chest pain started 4:30 p.m. along with headaches (constant)

Wednesday, April 20, 1994

8:00 p.m., headaches. 2:00 p.m., 5:00 p.m., and 1:00 a.m., headaches.

Still severe pain in legs, and feeling of fever in knees and