Below is a testimonial of a friend of ours who was diagnosed with lupus. As you can imagine, this diagnosis has completely changed her life. Please read her compelling story of how she learned of her disease and what she does to cope with her symptoms.
It was February 5th 2009, ironically my 25th birthday. I still remember it as if it was yesterday. I woke up thinking I had come down with a horrible flu; extreme fatigue, achy, fever, muscle and joint pain. The muscle pain was so deep that I thought it was coming from my bones. After about a week and half of the symptoms not going away I went to my primary doctor who ran blood tests. I came back a couple days later to find out all the general blood tests were normal. I insisted that something was wrong and he decided to further investigate by checking my inflammatory markers. A couple days later I found out that my “Sed Rate” or Erythrocyte Sedimentation Rate and C-Reactive Protein were elevated. (FYI: these tests are not part of the normal CBC (Complete Blood Count) or CMC (Complete Metabolic Count) blood tests). At this point, he explained that there was inflammation going on in my body and it was out of his element. He referred me to a rheumatologist. Of course I immediately started crying. I didn’t know what was wrong, but I knew it couldn’t be good. I went right home and began googling the two blood tests that were positive and found a list of associated diseases; cancer, Lyme disease and autoimmune diseases such as Lupus and Rheumatoid Arthritis.
By the time I was able to be seen by the rheumatologist, I had done a lot of research and had a list of questions. The doctor ordered a bunch of additional blood work and asked me to return in a week. When I arrived to my follow up appointment, the rheumatologist was very matter of fact. He said that certain tests were positive but he was not able to make a diagnosis and only time would tell. I started crying as I remembered all of the awful diseases that could cause these tests to be positive; cancer, Lyme disease and autoimmune diseases. I asked him if he could at least rule out cancer and again he said only time would tell. How awful is that? I walked out crying hysterical, feeling even more confused and knowing I needed to seek a second opinion.
At this point my fever had gone away, but over the past month I had lost 10 pounds (unintentionally), and was still having severe muscle pain and extreme fatigue. I got on the waiting list to see a doctor at Cedars Sinai in Beverly Hills. Dr. Michael Weisman came highly recommended and was both a physician and professor at UCLA. I still remember walking into that appointment. I brought copies of all my lab work, a list of symptoms and dates for when they began. After listening to my story and looking over my lab work, he confidently said “I am 92% sure you have Lupus.” He sat with me while I cried and explained that Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints and or/organs inside the body), but thankfully my Lupus is very mild. He explained that my Anti-Nuclear Antibody (ANA) blood test had come back positive and showed that my body was creating antinuclear antibodies. In a healthy person, your immune system normally makes antibodies to help fight infection, such as viruses and bacteria. However, in my body and other people with autoimmune disease, the immune system cannot tell the difference between foreign invaders and the body’s healthy tissues. In result, autoantibodies are created and attack and destroy healthy tissues (such as muscles, joints and organs). In my case, the autoantibodies in my body cause inflammation and pain in my muscles.
After going through a period of sadness and adjustment with the new diagnosis, I decided to learn everything I could. Some of the most interesting facts I have learned:
- Lupus affects 1 in every 185 Americans, and although it can occur at any age, and in either sex, 90% of people with lupus are women in their childbearing years.
- Lupus is dubbed “America’s least-known major disease” by the National Lupus Alliance because the cause is unknown, the cure equally elusive.
- Lupus symptoms-such as achy joints, fevers, extreme fatigue, hair loss and skin rashes-often are ignored because they mimic those of less serious illnesses
In addition, I became proactive with prevention. Besides taking Plaquenil, which is an anti-malaria medicine thought to slow the progression of Lupus, I began taking Cymbalta to help combat my muscle pain. I found that walking regularly and biofeedback (a type of meditation and deep breathing) helps to keep the pain down. My diet consists of rich whole foods. Tons of fruits and vegetables, 100% whole grains, beans, nuts, fish and lean meats (poultry and chicken). I avoid dairy, red meat and processed foods.
I became active with the Lupus Foundation of Southern California in San Diego. I continue to volunteer, attend their support groups and seminars. Our next event is the 5th Annual Lupus Walk at Shelter Island, San Diego on Sunday, July 22nd. I will be walking the 3 miles to support and help raise funds for the Lupus Foundation of San Diego. It would be wonderful if you joined me! (See link below)
So what’s the hardest part? I am a type A person and I hate not having control of my life. The thing with Lupus is that it is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Therefore, it is hard to predict when your next “flare” is coming. As time passes I have learned more and more about what triggers my flares. The big thing for me is pushing myself too much. When exhaustion occurs, so does a flare. I have had to learn to adjust my level of activity and plan “rest” days after big events. I am still learning and growing with Lupus on a daily basis.
Lupus Foundation of Southern California (San Diego):
Lupus Foundation of America:
Link for Lupus walk information: