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Category:
Health/Wellness
Publisher: Create Space
Price: $4.99 (eBook)
When she was suddenly assaulted by myriad baffling symptoms of joint pain and extreme fatigue, the author embarked on an intensive search for diagnosis and treatment of what would be diagnosed as systemic lupus Erythematosus, a little-known autoimmune disease that promised to destroy her body, her mind and her spirit. From the pages of her intimate daily journal, we travel with her through chronic joint pain, frustration, anger and grief for her former self to her current state of playing the cards she was dealt.
She has found support and friendships with an online Yahoo group known fondly as Lupies, and shares some of their often outrageous, somewhat irreverent and always heart-felt stories and comments.
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The Cards We’re Dealt features comments, advice, complaints and information gathered from participants in various online lupus support communities to help those who need information about this disease, want to learn how others cope, or want to understand a friend or family member’s struggle with the baffling disease of Systemic Lupus Erythematosus.
According to the Lupus Foundation of America, Lupus is more common than Leukemia, Hodgkin’s Disease, Muscular Dystrophy, Cystic Fibrosis and Multiple Sclerosis. And yet, the average person rarely knows about lupus and is generally misinformed, vaguely believing it to be “kind of like arthritis, isn’t it?” While my symptoms first presented themselves as “kind of like arthritis,” and I was thus diagnosed and treated for two years for RA, other symptoms soon presented themselves, until, after three emotionally charged and pain-filled years from the onset of symptoms, laboratory tests confirmed the presence of SLE, or Systemic Lupus Erythematosus.
There are two distinct types of lupus. One is discoid lupus, where the skin shows large “splotches” or red rashes in clusters, mostly on the face, across the cheeks and the bridge of the nose, creating a “wolf-like” mask. One can have discoid lupus and systemic lupus at the same time; generally, those who suffer with the discoid form of lupus do not develop the systemic form.
The second is systemic lupus; that is, it is throughout the body. It has been classified as “an autoimmune disease.”
Lupus has nothing to do with AIDS, I must point out. I like the ‘short’, understandable description of what lupus is: Think of the body as a fort, like in the Wild West Days. Every now and then, Indians attack the fort, and the soldiers inside the fort (white blood cells) repel the Indians (the infection). Then the fort (body) settles down and goes back to its usual routine, until the next Indian attack.
Only with lupus, THERE ARE NO INDIANS. The soldiers inside the fort are ever ready for an attack, but the Indians don’t arrive, so the soldiers (stressed) turn on each other, fighting among themselves, eventually destroying the fort itself: lungs, kidneys, central nervous system, etc.
As of this printing, there is no cure, but it is treatable.
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Excerpt
May 2002
“Are you sure you have Lupus?” My newest doctor asked as he entered the exam room, my lab tests from the week before in his hands.
“Yes. I was diagnosed in Oct. 1988,” I replied. “Why? What do the tests show?”
“Well, they show no sign of Lupus. Sed rate is normal, no RA factor…”
“Great!” I burbled. “Suppose I’m in remission?”
“Or maybe you never really had Lupus.” He shrugged.
For one crazy, hopeful moment, I actually thought: “Maybe he’s right. Maybe I didn’t really have Lupus, after all.”
Then my thoughts flooded to the three years of constant joint pain, lab tests, five doctors telling me it was either “all in my head” or “Just rheumatoid arthritis” all the while being told not enough symptoms were showing in the blood work.
Never really had Lupus? I wanted to shout: Then what was all the lung infection, the hair loss, the treatments with Cytoxan, Imuran, prednisone; the difficulty walking when vasculitis caused foot drop in both feet and I fell down a lot? Frustration mounted on frustration as the disease progressed.
Never really had Lupus? Then what was with my red, swollen joints, causing one rheumatologist to rhapsodize, “What beautiful swollen knees!” When I couldn’t wear rings, watches or bracelets because of the intense pain and swelling? When even my collarbones hurt?
Never really had Lupus? Then what was all the bouncing from job to job, being fired or quitting due to sheer physical exhaustion, or finding it impossible to concentrate on the task at hand?
Never really had Lupus? Then why did I break out in a fiery rash after being in the sun? What was the point in hauling my body out of bed at 5:30 a.m., climbing painfully into a tub of hot water, eating breakfast so I could swallow my handful of meds (that didn’t seem to be doing much good) so I could get dressed and have my butt in a chair at my office-du-jour by 8:00 a.m.?
Never really had Lupus? Then what was all the memory loss about? What words escaped me at just the right time to embarrass me so that I could only shrug and murmur, “Lupus lapse.”
Rather than lash out at this newest, most optimistic young doctor, I merely smiled and shrugged, “Yes, I really did and really do have Lupus.”
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