Living With Lupus
Copyright © 1998 Donna Thompson-Walsh. All rights reserved.
A year and a half ago, the only thing I knew about lupus was that the American writer Flannery O'Connor died of it.
Last week I was diagnosed with it.
It was something I had been expecting for a year. The unexplainable bruises and strange red freckles that I noticed last December turned out to be symptoms ofITP (Immune [Idiopathic] Thrombocytopenia Purpura),a blood disorder in which your antibodies kill off your platelets-one of the elements responsible for clotting. After several months of steroid therapy and a splenectomy, my platelets were again at a normal level. Although happy with my results, my hematologist suggested that my ITP might be a symptom of lupus, a chronic autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue and cells. I listened to him, considered it, checked out theLupus Clinical Overview pageand decided that I did not have it.
As I was coming off prednisone, a steroid that is also used to treat lupus, I experienced my first lupus flare. I thought the persistent fatigue, body aches, facial rash, hair loss, hives, joint pain, and recurring nosebleeds were withdrawal side effects of prednisone. My hematologist said he didn't think so, and referred me to a rheumatologist. The past year has been a battle of advancing and retreating symptoms punctuated by regular barrages of blood tests and doctor appointments.
My salvation through it all has been my kind and understanding husband and several excellent Web sites devoted to living with lupus.
An invaluable resource has been the Lupus Foundation of America's Web site, Living with Lupus. The site offers up-to-date information about lupus causes, symptoms, testing, and treatment. It is also offers searchable research and resource libraries, listings of local LFA chapters throughout the U.S., and six health forums: "Newly Diagnosed and Have Questions," "Symptoms," "Medications and Side Effects," "Living with Lupus," "Family and Friends," and "Chatter."
I learned a great deal about lupus from the LFA Web site. Thousands of Americans die each year from lupus-related complications. Lupus is treatable, but there is no cure. More people have lupus than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined. LFA's market research data found that there are between 1,400,000 and 2,000,000 people reported to have been diagnosed with lupus. In most people, lupus is a mild disease affecting only a few organs. For others, it can cause serious and even life-threatening problems.
There are three types of lupus: discoid, systemic, and drug-induced. Discoid lupus is always limited to the skin. It is a rash that may appear on the face, neck and scalp. This type of lupus generally doesn't involve the body's internal organs. According to the LFA "Causes, Symptoms, Testing, and Treatment" page, systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and tissues may be affected. No two people with systemic lupus have identical symptoms. Women and minorities are disproportionately affected by systemic lupus. It is most common in women of childbearing age and may include periods in which few symptoms are evident (this is called remission) and other times when the disease becomes more active (this is referred to as a "flare"). Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus.
Support and Understanding
The page where I spend the most time on the LFA site is the "Newly Diagnosed and Have Questions" forum. As its name describes, it is a place for people who have been diagnosed recently or are awaiting diagnosis. I check the site once or twice a week to read the postings. It is a close-knit and supportive cyber community.
Questions posted in the "Newly Diagnosed" forum run the gamut, from people looking for the name of a good rheumatologist in their area to pointers on dealing with facial rashes, hair loss, medication side effects, and people who just don't understand what they're going through. Some of the best tips I've gotten have to do with keeping flares under control: wearing sunscreen-many lupus flares are triggered by exposure to the sun-avoiding caffeine, decreasing stress, resting when I am tired (that sounds like a silly one, but it is amazing how much better I feel when I give myself permission to take it easy!), and exercising regularly-even if it hurts!
The "Recently Diagnosed" forum provides an arena to vent and share information-what's worked, what hasn't and what to expect. I've met some admirable people through the forum. Some of them tell some very sad stories-stories about feeling terrible, being exhausted and having spouses or family members who don't believe they're sick. I have posted quite a few messages about prednisone, a drug with many discomforting side effects such as acne, hair loss, weight gain, swelling in joints and extremities, and more spooky brain chemistry changes than you can shake a Prozac at. The side effect that bothered me most was my puffy moonface, so extreme that my two-and-a-half-year-old nephew cried and insisted "You not Donna!" whenever I visited him.
Another terrific site that has helped me to educate myself is the Lupus Issues and Answers page. It has a lot of the same information mentioned above and a great chat room.
The Living with Lupus page maintained by Sherry Messick has some great links to nutrition sites and personal pages, organizations, information sites and support groups for people with lupus and other rheumatic and autoimmune disorders. It also has a cupid animation that dances to the tune of a computerized, oddly calming version of "The Keeper of the Stars."
Lupus Today is a spunky newsletter-style page with some interesting links, as well as a sobering "People to Remember" tribute to people who have died of lupus complications.
Complete with pretty blue-and-yellow-butterfly wallpaper, U.K.-based Lupus (SLE) page is a touchy-feely, cute source of information on complementary/alternative therapies such as aromatherapy, homeopathy, herbalism, flower remedies, and color healing.
Thanks for journeying with me through the online lupus world! These Web resources have helped me to be a little calmer, a little more prepared for my doctor appointments and much less fearful. I plan to have a long, healthy, happy life-monitoring my lupus and living well.
Donna Thompson-Walsh is a Los Angeles-based technical editor.