Utopia Wellness Lupus Campaign 2016 Day 1-10

Posted on May 23, 2016 · Posted in Lupus


DAY 1: THE DIAGNOSIS: “It’s Systemic Lupus”, he said. I had heard of it. My mother and grandmother had been diagnosed with it in their earlier years. The previous days, I had not been able to brush my teeth because of the pain ruminating through my fingers and wrists. My wrists, fingers and other joints throughout my body were also bright red, burning hot and very swollen. Body was inflamed. Lately, awakening from 14 hours of sleep, felt more like 3. I was 18 but my body felt 100 years old. I did not know what Lupus was but I was certain of one thing, my life would never be the same and it hasn’t.

Day 2: Lupus is considered an invisible illness. A person may not appear to have any visible signs of illness. “But you don’t look sick” is a typical feedback response. This can be frustrating for the person living with the Lupus. Because of this, people living with Lupus may often feel misunderstood or isolated.

Day 3: Lupus is a chronic autoimmune disease that can affect virtually any organ system in the body. In an autoimmune disorder, the immune system can’t tell the difference between healthy body tissue and antigens (foreign invaders) and in turn begins to attack itself.

Day 4: Movement is an essential and often overlooked tool for people living with Lupus, however due to bothersome symptoms such as fatigue or joint pain many do not incorporate it as part of their daily routine. YOGA and WALKING are highly recommended for Lupus. Research studies report decreased fatigue, improved joint mobility, reduction in stiffness, increased muscle strength, improved flexibility, improved immunity, increased bone density and improvements in overall mood. Do at 30 minutes per day, spread it out as tolerated. This is a non-negotiable.

Day 5: Relying solely on medications is not sufficient for a disease like Lupus. 21 years of personal experience with traditional and holistic interventions in addition to endless research has brought me to the conclusion that autoimmune disorders are particularly complex illnesses needing various possible interventions; holistic and medical. We MUST Incorporate mind, body and spirit in the healing process. Food, movement, healing traumas, illness perception, using breathing to manage stress and prayer are a few non-medical approaches.

Day 6: Food and Lupus. There is no biological adjustment in our bodies to the chemicals that are in our foods nowadays. Our immune systems were not created to process or comprehend these foreign toxins. The Lupus immune system is highly sensitive and these chemicals can be responsible for creating an inflammatory response. If you are diagnosed with Lupus, it is urgent that you read all your labels, check “ingredients” and only purchase items that have recognizable ingredients. Getting tested for allergies to foods is also a must.

Day 7: Several disorders have a “negative association” with Lupus, in other words having Lupus significantly decreases chances of getting certain diseases. 500,000 to 1 million Americans had SLE and at least 50,000 of them received blood transfusions between 1978 and 1983 when our blood supply was not safe. One would expect some of the recipients to develop HIV, however not one single case was reported. Both diseases represent opposite poles of the immune system (HIV patients have few CD4 cells & Lupus patients have overactive CD4 cells).

Day 8: Fatigue is one of the most common frustrating symptoms for people living with Lupus. Ironically, insomnia and difficulties sleeping is another common symptom usually brought on by the use of prednisone and other prescriptions used to manage the dis-ease.

Day 9: When I tell you that Lupus can affect anything in your body, I really do mean anything! “Dry mouth often associated with lupus can be caused by medications, but also by an autoimmune condition called secondary Sjogren’s syndrome. A large % of patients diagnosed with Lupus will also have this secondary diagnosis. Those who have dry mouth develop high levels of acid in the mouth, because of the lack of saliva, under attack from the acid, the teeth decay rapidly. (From LFA website. Full article: http://www.lupus.org/magazine/entry/mouth-maintenance)

Day 10: People living with Lupus are often forced to take multiple medications that were originally created for other diseases due to lack of specialized research. Chemotherapy, Corticosteroids and Antimalarial drugs are just a few of them. This used to be my cocktail of medications, over 12 pills per day. But medications, while necessary at times are not the only way to manage Lupus.