Lupus runs in my family so I was not surprised at age thirty to have ANA tests done and find out I had Lupus as well. Some symptoms had given me a clue to go ahead and do the bloodwork: endless strings of infections that weren't responding to antibiotics, swelling in my joints, complete exhaustion after being out in the sun. What finally had me move forward with testing was being so sick with the flu, bronchitis and pneumonia at once with no antibiotic working.

While sick in bed, upon the recommendation of a friend, I began reading "Diet for a New America". It opened my eyes to the hardships I was giving my body by what I was eating. My body had too many struggles on it's own to give it trace antibiotics in meat to contend with or pesticides on vegetables. Even food dyes and artificial sweeteners were adding toxins to my body that a healthy person might be able to tolerate, but I didn't need to tax my body in that manner.

One key was to completely change my diet. I first took all meat and eggs out of my diet. I saw some improvement so I progressed to taking out all dairy. I switched to organic fruits and vegetables and saw even more improvement. I continued changing my eating habits until I was eating a Vegan diet. This gave my body the boost it needed to get healthier for a little while, but that alone was not enough to keep me health. It was a temporary illusion.

I again found myself getting worse. I began seeing a specialist and started what is "standard treatment" for Lupus with steroids and anti-inflammatories. I kept getting worse and worse until I was taken off of work and put to bed for a month. I lay in bed with the tissue around my heart so swollen that my heart rate stayed elevated all of the time. I was a single mom with three young children who were learning how to cook dinner for the family with my instructions from bed. They would come through my bedroom to check on me, bring me water, bring me food, and leave every morning for school with worried looks on their faces. The impact of the looks on their faces was the most profound awakening. I realized that if I did not do something drastic and work aggressively to change the path I was on, I would not be alive to raise my children. I had to do something differently. There had to be something other than how I was being taught to handle my Lupus. As it would happen, a fall I had taken at work a few weeks prior would be what would change my life.

I was scheduled to see a chiropractor to help fix the damage from my fall. I arrived to see him for the first time a couple of weeks after I was released to return to work. I was wearing a hat to hide the patches on my head where there was no longer any hair. The steroids had caused my face to swell and the top of my spine was swollen in a huge hump that clothing would not hide. My coloring was pasty and announced to anyone that I was very sick. That is the moment that my life began to take a turn. This gentle healer began to encourage me to change the path I was on. He was the first medical professional that suggested to me that I might do better OFF of the medications. The seed of thought led me to another way of thinking and handling my disease.

The next key was to wean myself off of all the medications I was taking. That included the anti-inflammatories and steroids. I was seeing a very renowned rheumatologist at the time who was giving me his very best care, but I was still getter worse And the meds were causing side effects: stomach ulcers, hair loss. The first six months off of meds were NOT easy, but they gradually improved. I had to live through some very painful days in the beginning.

Yet another key was an excellent chiropractor. Keeping my body in as good a condition as was possible was an important part of the picture. That meant no pinched nerves affecting the functioning of any organ in my body. To this day, if I feel increased pain in any location, it is to my chiropractor that I head first.

Another key is to stay out of UV rays. That does not just mean staying out of the sun, but also staying away from halogen and fluorescent lighting. There is plenty of reading on how Lupus flares are triggered by exposure to UV rays, but the warning about how lighting will affect it is lost in the communication. In my home, I use incandescent lights for this reason. I also limit my exposure to UV rays in other ways: heaviest tinting available on car windows, a sun umbrella, hats, sunscreen, a sun jacket. Solumbra is a company that makes wonderful products (my jacket and umbrella) made of a material that blocks UV rays dramatically. When I was very sick I had to be extremely careful about ANY exposure to UV rays. As I've gotten healthier I've found I can handle small quantities of time in, say, a retail store, but I will never wander the mall for hours without being completely exhausted and risking a flare. When I was at my most ill, I had to have the lighting changed in my work area. I had halogen lighting at the time, which is the worst for UV rays. I had them changed to fluorescent lighting with covers that were specifically made to filter UV rays. Many companies have funds set aside, to make accommodations for handicapped employees, which can be used for someone needing a special environment due to a health condition.

Another key is natural supplements. I make sure that my body is receiving the optimal daily recommendations for health. Not the RDA, which is extremely low, but the optimal for HEALTH. I also take a natural anti-inflammatory. I've used a few different ones over the years, because it seems that after a while, it doesn't work as well. A good book for reading on this is "Prescription for Nutritional Healing". It lists vitamins and herbs and their benefits. Some of the ones I've used are Evening Primrose Oil, Flaxseed Oil and Bromelain and Papain. It is a bit of a trial and error basis to find which one your body responds to.

Another key is drinking lots of water. Water is good for health because it flushes toxins out of your body. With Lupus, you need all toxins flushed out as quickly as possible.

Another key is adequate rest. This is hard to accomplish with Lupus, but there are times when I have to force myself to lie down in bed and rest. If you are sensitive to your body's needs, you will begin to recognize when you need to lie down and give your body a rest. Someone with Lupus cannot expect to be able to run a hurried life on six hours of sleep. I typically do fine with 7 to 8 hours of sleep and am cognizant of the need to pause and put my feet up periodically during the day.

A final key is to exercise gently. Your body needs movement, even though it may be painful. The increased movement will help your body's circulation, which will aid your body in flushing toxins out of your system as it should. Find something gentle to your body that you enjoy doing and do it regularly. Even a nice walk at dusk or dawn (when your enemy, the sun, is not around) is excellent exercise. Swimming or water jogging is another excellent "kind to your joints" exercise.

The main concept behind my present state of health is one of giving my body the optimal chance of health by eliminating whatever strains can be eliminated. I am the only person I know diagnosed with Lupus that is not on medications and in reasonably maintained health. I rarely have an infection in any organ that even requires antibiotics at all. It's hard to believe sometimes, remembering how many infections I used to battle. My body is truly getting stronger.

I've watched family members that also have Lupus die. I've watched others getting sicker. I don't discount the severity of the disease at all. But they have all been under "standard" care for Lupus and are not getting any better. They do not agree with what I have done, yet I am enjoying quite reasonable health. I had a completely problem-free pregnancy, healthy birth and wonderful extended breastfeeding relationship four years after changing from the "standard" care for Lupus to what I have outlined above.  

I don't have any guarantees that my health will continue, but I've been doing very well now for over five years. I hope I've given you some things to think about that will help you in your struggle for health.

Recommended Reading:

The Lupus Book - A Guide for Patients and Their Families
by Daniel J; Wallace