Lupus: Origin Story

I was diagnosed with systemic lupus erythematosis (SLE or Lupus) in early 2016. Lupus is an autoimmune disease in which the body’s immune system causes inflammation. It can affect any organ system in the body. My diagnosis followed several long years of increasingly painful and frustrating symptoms. Though Lupus is not a “good” diagnosis, it gave me a profound sense of relief to know that this is not all in my head, and that my condition finally has a name.

Looking back the patterns are easier to see but they were not obvious as I encountered them. My experience is fairly typical for people with Lupus. According to the Lupus Foundation of America, it takes an average of six years from onset of symptoms to correct diagnosis. More than half of people are misdiagnosed at first, and it takes an average of four health care providers to find one who correctly diagnoses Lupus.

The first symptom I noticed was an overwhelming fatigue. For several months, I would come home from work and fall asleep on the hard floor under the kitchen table. I had two young kids at the time, so I was not sure whether this level of fatigue was normal or not. I was diagnosed with a thyroid deficiency.

Then my fingers started losing circulation when I drove my car in cold weather. I lived in Montana at the time, where cold weather occurs at least six months of the year. My fingers turned white and it took several minutes in warm air for the blood flow to start again. This is called Reynaud’s Syndrome. It can occur on its own, but it also accompanies many autoimmune diseases.

After that, my joints started aching and swelling. First my toes and the balls of my feet, then my hands, knees, and elbows. On bad days, my shoulders and hips are symptomatic as well. X-rays showed no joint destruction, which confused diagnosis further. The pain would wake me up in the middle of the night, after I had finally managed to fall asleep.

My wonderful rheumatologist patiently started medication regimens to attempt to find one that worked. Prednisone was a staple to control inflammation, and for a long time it was the only thing that was effective. I had a core of seven medications with an eighth and sometimes ninth that was rotated through. This number also is in line with national averages. I tried methotrexate which felt like poison (pretty sure it is…). I tried Humira with no effect and Remicade, which made me feel like I had a bad case of the flu. Each attempt took 3-6 months to evaluate the effects, which to this point were negligible.

A fluke accident led to a breakthrough. My doctor was in a horrible car accident which took her out of work for months. I was transferred to one of her colleagues. He looked at my list of symptoms from a fresh perspective, and was convinced I was a better fit for connective tissue disease than the working diagnosis of some form of autoimmune arthritis. He recommended specialized blood work to test his hypothesis; it came back with a very strong likelihood of Lupus.

Shortly thereafter, he started me on Benlysta. Similar to Remicade, Benlysta is a biologic drug administered intravenously. It is the first and only drug created to-date to treat Lupus specifically. My doctor warned me that I may not see immediate results, but like the other treatments I had tried, we would try it for six months and evaluate the effect at the end.

It has been more than six months now, and I believe that Benlysta has been an improvement in my quality of life. I do not feel back to normal by any means, but I have been able to reduce other damaging medications from my daily regimen. My dose of prednisone, which can lead to cardiac issues and osteoporosis with prolonged exposure, has been reduced to a quarter of what it was one year ago. I have also been able to reduce my use of pain killers and their attendant risks and side effects. These are positive changes, and at this point I will take any small improvements I can get.

This year I am marking Lupus Awareness Month by participating in the Lupus Foundation of America’s Make Your Mark™ program. I am hosting a Lupus Awareness Month Candle Sale on my Etsy site to raise critical funds to improve the quality of life for all people affected by lupus through research, education, support and advocacy. Any funds donated directly through my Make Your Mark page are tax-deductible. I would greatly appreciate your support.

For more information on my Make Your Mark fundraiser, please click here:

For Lupus Awareness Month facts, please click here:

For my Etsy store, please click here:

Thanks for reading!


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