What is Lupus Anyway?

I am so grateful for the amazing support that I’ve received since going public with my recent stroke diagnosis.   Yet I’ve noticed that when people have expressed their sympathies in person, there’s that a look in their eye that says ‘I have no idea what lupus really is and I’m afraid to ask’.    

Our body is an amazing thing.     Our immune system allows us to come into contact with millions of different bacteria, viruses, and other foreign invaders every day and manages to keep us healthy.   It manages to identify the bad guys and attack them while still leaving our own healthy tissues alone….usually.  

That’s how it SHOULD work.    Yet problems sometimes arise.  

Sometimes our body mistakes our own tissues for foreign invaders.    It labels those tissues as the enemy and attacks them.    

If our body attacks our joints, its called ‘Rheumatoid Arthritis’.   Our joints become inflamed and break down.    If our body attacks our own thyroid its known at “Hashimoto’s thyroiditis” and our thyroid gland doesn’t work correctly.     If our nerves are attacked, its known as “Multiple Sclerosis”.     Celiac disease is when our body attacks our own colon.    If our immune system thinks that our own pancreas is a foreign invader?   We call that type 1 diabetes and we can no longer make insulin in the correct amounts.

These are all referred to as autoimmune diseases as the body’s own immune system attacks itself at a specific place in the body.      

Lupus is also an autoimmune disease yet instead of attacking a specific tissue, it attacks the DNA of each cell.    Yes, you read that correctly.    It pretty much attacks every tissue in the body as every cell in our body has DNA as its genetic material.  

As my immune system attacks various tissues,  they become inflamed and often painful.   Over time, this longer term inflammation results in damaged tissue.    

Lupus tends to affect females much more than males, and often in the prime of their life.    I first began having symptoms when my children were young.    

One of the worst and most frustrating symptoms of this disease is fatigue. It can be brutal.   It’s not like the tiredness you might feel after a few sleepless nights.   This is much more incapacitating.  At my worst I am so ashamed and guilty for my inability to get out of bed. This will then lead to depression.    It is a viscous cycle.   

Some of the most common symptoms of lupus (as listed on lupus.org) are:

  • Extreme fatigue (tiredness)
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • Swelling (edema) in feet, legs, hands, and/or around eyes
  • Pain in chest on deep breathing (pleurisy)
  • Butterfly-shaped rash across cheeks and nose
  • Sun- or light-sensitivity (photosensitivity)
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white and/or blue when cold (Raynaud’s Syndrome)
  • Mouth or nose ulcers

Lupus becomes life threatening when it affects the kidneys, the brain and/or the heart. When I was first diagnosed I had issues with my kidneys with increased protein levels in my urine and an elevated creatinine level. I also developed pleurisy, which is an extremely painful inflammation of the lining of the lungs. My red and white blood counts were very low. I also had skin issues with rashes that would develop when I was exposed to too much sunlight.

When I was at my worst 15 years ago with the beginnings of kidney failure, I was put on strong chemotherapy drugs and even lost my hair! Medications commonly used to treat lupus are steroids such as prednisone, immune suppressant drugs as well as a drug called Plaquenil which is used primarily as an anti-malaria drug yet somehow works to help lupus. I have been on countless medications to keep my disease under control.

Many other disorders are associated with lupus yet can also occur independently of the disease. One such disorder is anti-phospholipid syndrome (APS), which I also have. This disease affects the blood and often causes blood clots. The first indication that I had an autoimmune disease was after my third miscarriage. The miscarriages were due to blood clots in the placenta.

When lupus affects the brain things get much more complicated. Vasculitis is inflammation of blood vessels. This can occur in the brain or any other part of the body. My brain now has white matter disease due to inflammation of the small blood vessels in the brain. Additionally, my brain has been affected by mini strokes due to the APS. Now I must be more vigilant with my health and watch for signs of any disease activity. I will need to be on blood thinners possibly the rest of my life.

What causes lupus? There is no one cause. Most experts believe it is a combination of hormones, genetics, and environment (www.lupus.org). Because so many more women develop the disease than men, researchers are studying the effects of estrogen on lupus. Furthermore, a person with lupus is much more likely to have relatives with lupus or other autoimmune diseases. Yet genetics alone are not enough to cause lupus as indicated when one identical twin growing up in the same environment develops lupus and the other does not. Then you must also consider something in the environment triggering lupus in a person who is genetically predisposed.

Some environmental triggers of lupus are:

  • Ultraviolet rays from the sun and/or fluorescent light bulbs
  • Sulfa drugs, which make a person more sensitive to the sun
  • Sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
  • Penicillin or other antibiotic drugs such as: amoxicillin (Amoxil®); ampicillin (Ampicillin Sodium ADD-Vantage®); cloxacillin (Cloxapen®)
  • Infection, colds or viral illnesses
  • Exhaustion
  • Emotional stress, such as divorce, illness, death in the family, or other life complications
  • Anything else that causes stress to the body such as surgery, physical harm, injury, pregnancy, or giving birth

Interestingly, when I first developed serious signs of lupus it was after giving birth and subsequently a serious infection. And currently, the development of my present flare up occurred after having surgery and two rounds of antibiotics for an infection as well as exhaustion from lack of sleep and emotional stress.

Some statistics about the disease from the Lupus Foundation of America (www.lupus.org)

  • 1.5 million Americans have lupus
  • Most people develop lupus between age 15 and 44
  • Women are more likely to develop lupus than men (9 out of 10 are women)
  • African Americans are more likely to develop lupus than Caucasians. 
  • Lupus is not contagious
  • Lupus is not similar to or related to cancer or HIV
  • 60% of people with lupus develop kidney problems

Despite having lupus, I will be running Badwater 135 this July as a means of spreading awareness of this difficult disease as well as spreading hope to other sufferers that we are stronger than lupus. Please visit my GoFundMe page if you would like to support this effort. 

Following Patsy Ramirez-Arroyo as I pace and crew for her in the 2018 Badwater 135 mile race across Death Valley. Temperatures reached 127 degrees.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.