Editor’s note: Jolynne Benson has been living with systemic lupus erythematous since 1981. She is telling her story in the hopes of shedding light on a disease that many know little about.
I have a life threatening chronic condition. I was diagnosed with systemic lupus erythematous in 1981. I have Reynaud’s phenomena in my extremities. They turn stark white in cold weather and hurt. I have also suffered with shingles (herpes zoster) twice. My three specialists are in Vancouver — dermatologist, rheumatologist and ophthalmologist. I see these doctors every three months.
My lupus arrived after my first child was born in 1978. Then an accurate diagnosis was confirmed in 1981. I was very sore in every joint in my body; it made it difficult to dress for the day. I experienced extreme fatigue. My autoimmune disease advanced and I became increasingly unwell. I was consistently nauseated and fatigued.
I live day to day on anti-malaria, a special compound made by a pharmacist into pill form. Other medicine includes methotrexate, Quinacrine, Plaquinal and folic acid. I take a lot of medicine to suppress and depress my immune system, which helps. I avoid preservatives, artificial sugars, pork and peanuts as my body will not tolerate them. I have flare-ups all year round, with more activity to the skin in the summertime, so I wear a hat.
I was in remission for seven years then went to school for nurse aide training. I became pregnant with my second child in 1987. My understanding is that you have to be in remission in order to conceive or your body will abort.
In 1998 I had a flare-up and I was compelled to stop working as my hands, arms and face were worse than the people I was helping. I was put on Accutain to alleviate skin lesions.
In 2006, my lupus was still active. I now have mild alopecia, causing hair to fall out. It eventually grows back as white hair.
I am 50 years old and have had my disease for half my life. I have an abundance of white blood cells that attack my healthy cells. It is just like friendly fire. I am photosensitive, which means I am allergic to the sun. The sun activates the white blood cells that trigger an alarm to attack and destroys my organs.
My skin is greatly affected by the sun, leaving patches of lesions on arms, chest and face that eventually disappear, leaving white spots.
It’s now 2012 and I still have to limit or omit events that are in the sunshine. I always find the shade.
There is no cure known for systemic lupus erythematous. Fifty years ago, they didn’t know a thing about this threatening decease of many faces.
There is medicine and treatments available today. I have excellent doctors who pay close attention to me, for which I am grateful.