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Facing The Lupus Giant: My Lupus Diagnosis

I'm a natural health coach, herbalist, and aromatherapy consultant using the power of essential oils to improve health and well-being.

Picture taken on my 40th birthday.  I was already diagnosed with a heart and lung condition at this point.

Picture taken on my 40th birthday. I was already diagnosed with a heart and lung condition at this point.

Life Before Chronic Illness

There are several narratives that describe my life, but never thought that chronic illness would be one of the stories that would play out in mine. Sometimes I think back to my life before illness, and long for those days when I could run 3 miles without struggling to breathe, back to the days of my martial arts training, back to the days when I could run around and play with my children without having to pause constantly to take a breath.

This story will document a little of my life after lupus. Some images may be disturbing. I have made myself very vulnerable in this particular segment, and I appreciate your comments at the end.

Thank you for allowing me to share my story with you.


Leading up to my Lupus diagosis

After battling with what seemed like endless illnesses, as you can see from the list below, I was finally diagnosed with lupus, and was told that lupus was the culprit all along.

  • Diagnosed with asthma around 2000
  • Diagnosed with heart condition chronic atrial fibrillation late 2006
  • Diagnosed with COPD and mild Emphysema circa 2008
  • Diagnosed with pernicious anemia January 2012
  • Diagnosed with neuropathy February 2012
  • Recommended for lupus screening by the neurologist based on all my other diagnoses
  • Diagnosed with lupus March 2012
  • Diagnosed with depression in May 2012

Since my lupus diagnosis,

  • I have undergone many iron infusions due to severe anemia.
  • I was also diagnosed with a degenerative spine...arthritis.
  • I have also been diagnosed with costochondritis...arthritis in the rib cage.
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The Diagnosis: "You have lupus!"

After the diagnosis

Obviously the journey to my lupus diagnosis took several years, as is the norm for many lupus patients. Lupus often mimics other illnesses, so getting the final diagnosis can sometimes take years. Getting this diagnosis of lupus was almost a relief for me. I finally had something to blame for everything that had been happening….but what the heck was lupus. I had no idea of an illness called lupus until my neurologist mentioned it, and then I spent days researching and educating myself on what it was, only to discover there were several kinds. Deep inside I was praying it was just the discoid lupus which affects the skin only…most of the time. However, I knew, based on all my other diagnoses that it would have been systemic lupus.

Once the confirmation came a few weeks later after the second testing, upon the insistence of my primary care doctor, the next question was, “What’s next?”

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So I Have Lupus! What's Next?

Based on everything I had read and researched, I had one major question: “Can I die from this?” considering that there have been advances in medical care….never mind the fact that there was only ONE, yes ONE, medicine designed for lupus in 100 years.

I was told that lupus is very unpredictable. I knew that based on research. I was told that the symptoms could range from mild to life-threatening at times. I knew that, also, especially since lupus had already attacked my heart, lungs, peripheral nervous system, stomach. I was told it was a chronic illness. I was told about flares, and about periods of remission that could occur.

AND THEN THERE WAS THE DREADED STATEMENT: THERE IS NO CURE FOR LUPUS! “YOU WILL HAVE LUPUS FOR THE REST OF YOUR LIFE!” I guess that’s what chronic illness means.

However, I was not going to accept the statements that it was "INCURABLE" nor that I was "GOING TO HAVE IT FOR THE REST OF MY LIFE."

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What Is Lupus, You Ask?

What Is Lupus?

Lupus, n a nutshell, is an autoimmune disease. It happens when the immune system attacks its own tissues, causing inflammation, swelling, pain, and damage. The immune system mistakes the body's own tissues as foreign invaders and attacks them.

Lupus symptoms include fatigue, joint pain, fever, and a lupus rash.

Some people with lupus suffer only minor inconvenience, while others suffer significant lifelong disability.

Lupus affects people of African, Asian, or Native American descent two to three times as often as it affects whites. Nine out of 10 people with lupus are women. The disease usually strikes between age 15 and 44, although it can occur in older individuals.





Different types of Lupus

Types OF LUPUS

Discoid lupus is characterized by a rash that appears on the face, neck, or scalp. The rash is typically red and scaly, and may cause discomfort and hair loss around irritated areas. When it appears on the face, it is sometimes called a “butterfly rash” because it resembles the wings of a butterfly. Some patients may have the rash for only a few days at a time, while others may suffer rashes that last for months or even years. This type of the disease also causes mouth and nose ulcers, as well as sensitivity to sunlight. In some cases, it may progress to systematic illness.

The best-known type of the condition is systemic lupus. While the illness can cause the rashes common in the discoid variety, it may also affect the skin, blood, nervous system, kidneys, heart, joints, and lungs. Some individuals with the disease have only one or two organs or tissues affected, while others may have many affected organs, systems, or tissues.