May 18, 2015

*Let’s be clear: I’m not a health care professional, just a lupus patient working with my doctors to find a better quality of life. Please talk with your physician or healthcare provider for their advice before trying anything new, especially herbs.

Post #1

Where to begin

More often than not, I’d be willing to dye my hair fuchsia and walk backwards on Wednesdays, if someone told me it would help me feel better.  Of course, we all know the basic recipe for living a healthy lifestyle - it’s the same for everyone:

Eat a well balanced diet, “Everything in moderation,” my grandmother used to say.

Exercise at least 15-20 minutes per day

Manage stress

Sleep at least 7 hours a night

Sounds easy, but, for me, this regimine is full of pitfalls - sometimes prednisone (a corticosteroid) stimulates my appetite so much, eating in moderation means trying not to finish a plate of ribs before the guests arrive. And it’s tough to get 15 - 20 minutes of exercise when it hurts to move my joints. 

In addition to a healthy lifestyle, patients with lupus, or other illnesses, must take their medications, supplements, doctor visits, therapy sessions and alternative treatments very seriously. 

Just to be upfront with you, by nature, I’m not a disciplined person - I enjoy interrupting patterns and breaking routine. I like variety in life, like a sampling plate of “small bites.” So, for me to launch into a world of restrictive diets, specific exercise programs and regular medications was, and still is, difficult. 

Like the healthy lifestyle recipe that applies to everyone, the lupus patient basic recipe for success is to “simply” manage inflammation. Approaches for managing the inflammation are as diverse as the people who have the illness, because, what works for one person may, or may not, work for another. I’ve found a blend of approaches works for me, like using anti-inflammatory medications, such as corticosteroids and NSAIDs (Nonsteroidal Antiinflammatory Drugs, like Advil or aspirin), eating an anti-inflammatory diet and including anti-inflammatory vitamins and supplements. I’ve tried managing my symptoms with an “all natural, organic” method, my first choice for treatment, and, I know it can work for some people, it just didn’t work for me. 

Very often, a well meaning friend will enthusiastically insist that “I have to see” this amazing health professional or, “I have to try” this miracle cure that worked for someone they know. Out of all the health professionals “I had to see” and out of all the products “I had to try,” I’ve yet to run across a miracle cure, a magic potion or a one size fits all pill. Some people genuinely feel well after some of the things I’ve tried, like drinking well balanced juices or, taking a low dose of the relatively innocuous malaria drug, plaquenil. 

Time and time again, I try new things, forever hopeful that I’ll find what works for me.

I may have forgotten some, but, here are a number of methods of lupus management I’ve tried over the past 10 years:

Natural/Alternative/Complimentary

Acupuncture

Chiropractic

Chinese herbs

Homeopathic tinctures

Magnet therapy

Liver cleanse and detox

Heavy metal detox

Yeast eradication

Vitamin Therapy

Electro-therapies (Electro-therapies use low voltage electric micro-currents in the blood and body tissues to disable a wide range of microbes, including viruses, fungi, bacteria and parasites.)

Body Work

Laban Movement Analysis and Therapy

Bartinieff Fundamentals

Yoga

Pilates

Gyrotonics

Aqua Therapy

Cranial-Sacral Therapy

Physical Therapy

Massage, various techniques

Lymphatic cleansing massage

Mind/body Work 

Meditation

Biofeedback

Creative Visualization

Spirituality Connecting

Looking at beautiful landscapes, sunsets/sunrises, flowers and other gifts from Mother Nature (This delightful task is well known to have a positive effect on the body, decreasing inflammation.

Medications

For Lupus

Aspirin

Plaquenil

Voltaren and other NSAIDs

Prednisone

Methotrexate

Imuran

Cellcept

Benlysta

Diets

Raw diet

Juice cleanse

Gluten free

Wheat free

Sugar free

Vegetarian

In the next post (look for new posts on Mondays) I’ll rate the methods for effectiveness.

Hello and Welcome to Lupus Light!

My goal is to shed a light on the debilitating disease, Lupus, by sharing information about what I've found that works, or doesn't work, for me. Ten years ago, I began the daily struggle with lupus, alongside my supportive husband, George, our children, Sarah and Hannah, and with George's sister, Dr. Patricia Eshaghian, a physician at UCLA Medical Center specializing in Critical Care and Pulmonology, shepherding my direction. At that time, very little information existed about lupus in the bookstores or online, and support groups in Los Angeles were limited.

For ten years, I've employed my research and analytical skills, using resources at my disposal, digging for clues on how to manage my health. From the latest medications to a cabbage soup diet, my trial and error method has turned up some good results - too good not to share.

Ten years ago, I was in bed for more than two years, unable to walk from joint pain, fatigue and inflammation all over my body. At my initial diagnosis, I presented with a hemoglobin of 5 (normal range 11-14) pericarditis (fluid around the heart) low platelets, debilitating joint pain, significant hair and weight loss, migraines, skin rashes and B-12 deficient. Fibromyalgia and daily migraine headaches settled in within a year, or two, along with arthritis, Raynaud's, debilitating muscle spasms, lividio reticularis, asthma and skin issues, including skin cancers.

During the first few years, I progressed slowly from our bed to the couch, to a wheelchair, to a scooter, to a cane... until today, when I returned from a three week trip to Europe with my husband to visit our daughters studying abroad for the semester. It's the first big trip since my diagnosis, and I'm VERY happy to report that it was awesome! Never did I imagine, ten years ago, that I would be able to run for a train, much less hop on and off with a suitcase.

Today, my health is far from perfect, but, my quality of life is vastly improved by what I've found that works for me. I sincerely hope that something I've stumbled across will help you, too.

With love and light,
Jana