Battling a Silent Killer, Lupus is My Biggest Secret

All my life people have described me as bubbly, effervescent, energetic, friendly, outgoing, and (my personal favorite) as having "a personality that's too big for indoor use".

I have co-owned and developed several businesses, run The Rose Parrot Clan study circles, organized social gatherings and Storytelling Meet-Ups, as well as developed a unique online writing forum. My various endeavors have garnered me many job offers that I had to turn down because I already had three jobs!

My family nicknamed me, "the little Dy-namo", which is a pun on my real name, Diane. They claim I'm a study in motion, and usually have several creative projects percolating at once.

Active in my Native American religion, (my ancestors are the Hopitu Shinumu, known simply as the Hopi) it is my honor and privilege to lead the Sacred Circles and study meetings, to teach the ways of our people to those willing to learn.

Known as a healer, I have acquired the first degree of the Usui System of Reiki, and am called upon to aid ill and ailing people.

Employed in the renewable energy field as an environmental journalist, I report on the condition of the health of this planet and the many ways available to use clean, renewable energy generation.

Signing all my e-mail and internet postings with a characteristic "Energetically Yours", it may surprise you to know that I'm battling a debilitating terminal illness, commonly called Lupus.

Lupus (Systemic Lupus Erythematosus or SLE) is a chronic autoimmune disease that causes the immune system to attack its own healthy tissues. These attacks result in; severe internal organ inflammation, caused by persistent fever of over 100 degrees; achy or swollen joints; prolonged, extreme fatigue; skin rashes; anemia; sensitivity to sun or ultraviolet light; hair loss; and susceptibility to cold or heat.

Since the year 2000, when I was first diagnosed with Lupus, I have struggled to continue to live a meaningful, vibrant life despite the fact that on many days I am so weak I cannot to get out of bed to fix myself a bowl of cereal.

Still, life goes on.

I've had to close down the construction business that my husband and I built from the ground up, because I was unable to keep up my half of the duties. I've had to say goodbye to the study circles, and religious gatherings in my home because my energy level doesn't allow me more than a scant four hours of activity on any given day.

My social life has been severely curtailed because I'm not always able to meet friends when it's convenient for them, especially if the event is in the late afternoon or evening, when my energy is at its lowest ebb.

But worry not, Dear Friends, I have adjusted my lifestyle to my new body. I eat only fresh, organic, chemical/pesticide-free foods and drink purified bottled water.

Since I go to bed so early, I rise in the wee morning hours when there's no one to make noise and disturb my precious writing time.

I run a wondrous writer's network, filled with the wittiest, wackiness storytellers, poets and bards in the world, and am in close contact with each and every one of them. My new online buddies are there for me whenever I am available, and vice versa, no more than a mouse click away. I don't have to feel guilty that I can't get together with them when it's convenient, because I'm available 24/7/365.

My writers are interesting people from all over the world, who offer me a chance to discuss renewable energy, the environment, Native American spirituality, or the latest in the weird and worldly. Oftentimes we just kick back, relax and play word games with our new-found friends.

With the energy I bring to my network, my ongoing writing projects, my marriage and consequently robust household full of furkids, no one would ever imagine that my biggest secret is a profoundly debilitating illness.

Don't get me wrong, I'm neither a saint nor superwoman. It has taken time to cultivate this attitude, being in my seventh year living with Lupus.

In the first few years I was going through what psychologists would say are the stages of denial. Believe me, at first I couldn't comprehend what the doctor had said to me, and basically ignored my condition for a year, trying to live life as I had before.

Even before was diagnosed, I knew I was slowing down, dropping the ball on one of the many projects I was juggling at the time. After a few episodes of embarrassing myself by not being able to meet my commitments, I started to seriously slim down my list of priorities.

The next few years saw a lot of angry resentment, feeling sorry for myself, and a few of the other steps that eventually lead me to the self realization that I could either let the disease ruin what was left of my life, or figure out how to live as gracefully as possible.

The next two years, I studied the few books I could find written about Lupus, and that led me to an organic, natural, chemical-free lifestyle. With the help of traditional established eastern medical practices, including; acupuncture, acupressure, Shiatsu massage, regular chiropractic care, traditional Chinese medicine (TCM), homeopathic medicines, herbs and supplements, I am able to function at my best capacity, and have started to enjoy life again.