SLE: What Lupus Means For Me
Written: May 22 '01 (Updated May 22 '01)
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Product Rating:
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Pros: It's not the automatic death sentence it was once thought to be.
Cons: Mimics many different diseases so diagnosis tricky. Flares are common.
The Bottom Line: Lupus, or SLE is a frequently misunderstood and difficult to diagnose condition, but not the automatic death sentence it was once thought to be...help is out there!
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| kcfoxy's Full Review: Adult Health Issues |
Poet Sylvia Plath put her head in an oven after battling this disease, Systemic Lupus Erythematosus, or SLE. Lupus, meaning wolf-like, refers to the typical butterfly rash you may or may not see on your nose, though up to 40% of sufferers will not have the rash, have it elsewhere, (such as on the chest), or only have it with sun exposure.
What Is It?
Lupus falls into the category of auto-immune disorders. Basically, this is self-betrayal, your body's immune system sending out white blood cell scavengers and mercenaries to destroy what it perceives as the enemy. Unfortunately, that enemy happens to be your own body's tissue.
Besides the disseminated, or widespread SLE, there is Discoid Lupus, which manifests generally as a skin disorder, and creates much less havoc and permanent tissue destruction, overall. With the discoid variety, what you see is what you get, whereas systemic lupus can run amuck through various internal body organs and systems. One analogy: endometriosis causes symptoms of pain and bloating by the irritation of exogenis uterine tissure. SLE creates similar irritation and the resultant bevy of symptoms in target organs, and miles of circulatiory pathways throughout your body.
Disease History May Hold A Key To Triggers
Because lupus can attack many body systems, (kidneys, lungs, skin, circulatory system and more), it can be tricky to diagnose. In my own case, I have to start far back, at the age of 19, and wonder if the seeds of this puzzling condition might not have been sown through the multiple body assault I suffered the week of final exams.
In bed with measles, a friend was kind enough to exercise my Shepherd/Husky pup in a wooded park not far from our off-campus housing. Little did we know that she had gleefully torn through the creekside, lush with late spring time poison oak. Cuddling her, and ruffling her fur upon her return, I was soon to add intense itching and facial swelling to my list of calamities.
Staggering into the crowded Student Health Center a day later, I was in pretty bad shape. Stoic, raised by a Christian Scientist grandmother, I nevertheless had to finally admit my body was overwhelmed. A sharp, veteran RN triaging the long, snaking line of students spotted me weaving in place, eyes swollen shut and as infectious as hell. Quickly I was rolled into a hastily vacated exam room and the fun began.
In the interests of brevity, let's just say I was finally diagnosed with measles, severe poison oak and mono all at the same time. This local and systemic assault put me on bed rest for a month. Needless to say, I did not graduate that year, and the raft of incompletes littering my final grade report proved the least of my worries.
Various etiologies have been proposed for SLE, but reviewing the literature, it would seem a wide variety of insults to the body, (and the body's resultant immune responses), including major illness, suspect retroviral assault and medications, such as sulfa drugs, may hold the elusive key.
Difficult To Diagnose
Fast forward 10 years. Everyone jokes about nursing and medical school diseases. It's embarrassing, rampant, and somehow humbling, all at the same time. We all read about the most esoteric and bizarre conditions and start developing some of the symptoms. In my case, I already had garden variety, (osteo), arthritis. It wasn't much of a mental stretch for me to next delve into the mysterious medical text hell of the auto-immune disorder cannibals such as rheumatoid arthritis and lupus.
Intrigued, I proceeded to make a list of my various symptoms, which over the years had been diagnosed as Mono, Epstein Barr, Chronic Fatigue Syndrome, Lyme Tick Disease and Fibromyalgia:
1. Frequent sore throats
2. Easily fatigued
3. Skin breakouts after sun exposure
4. Urinary frequency
5. Bloating
6. Irritable bowel syndrome
7. Swelling, itching and rash on ankles
8. Seborrheaic Dermatitis
9. Restless Leg Syndrome
10. Blurred vision
11. Arthritis
12. Painful trigger points
Being the opposite of a hypochondriac, prior to becoming a Registered Nurse I had generally ignored these symptoms, feeling they were just the usual body problems, or ones I shouldn't worry about. (It also helps to have a high pain threshold, though I have been accused by loved ones of being "macho"). The one time I did approach a dermatologist for the scalp problem above, I ventured a hesitant fib, "I have a sister who's an RN, and she thinks I might have lupus." Actually I had 2 sisters that were RNs by then, I was the student nurse. But I was the one who wondered about my seemingly unrelated symptoms and feared for the worst.
I Think I Have Lupus And I'm Going To Die
The punchline to the self-diagnosing that all med students and nursing students do, was the fact I was convinced I would die. I wrote my dearest friend, Craig, that I was dying, estimating I had 2 months to live and that I didn't feel too bad so far. Of course, the Doctor had shined on my initial inquiry and armed with a tube of Cortisone cream, the dermatitis was soon at bay.
How Did I Find Out I Had Lupus?
Fast forward another 10 years. As an R.N. I had the ability of observe Doctors and their bedside manners, and so selected the perfect, ( style, philosophy), match for my personal physician. So when I suggested a few additions to my annual blood tests, he raised an eyebrow slightly but readily concurred.
ANA, Anti-Nuclear Antibodies, is an excellent screening test for SLE and a number of other possible auto-immune diseases. Under the microscope these cellular hit men will glow with suitable lighting and contrast media.
The way they reach the results, expressed as a titer, or ratio, is to dilute your blood until no further antibodies show up. So 1:80 is mildly positive, 1:160 moderately so and 1:320 or above is strongly positive.
Other tests, including the older SLE, or Spot Test are available. Generally two positive tests are needed to begin arriving at a probable diagnosis. But there is one important thing to know: timing is everything with SLE.
Just as multiple sclerosis and leukemia have periods of remission and acute disease, so lupus had dormant and active periods, called flares. This is the best time to have blood work drawn, as the evidence may not be present in less active periods of the illness.
A Continuum Of Symptoms, Degrees Of Illness
Remember that grocery list of symptoms described earlier?
In flares, usually precipitated by stress, illness, sun exposure, many if not all of these symptoms occur. So many of them are related to the circulation impairment that results from the body's self-destruction.
My Doctor was amazed that I was able to figure out the SLE connection. Sure it was porphyria, diabetes and low thyroid, he nevertheless dropped the ball once it came time to meet with me and share the lab results.
"Well, it looks like you've got lupus. There isn't much we can do about that."
Arm Yourself With Knowledge, Help Is Out There
I'd have to call that dropping the ball. I was probably in shock for a week or two after that, and could have used a tad more bedside manner, and for me, at least, some helpful information such as handouts about the disease itself, treatment options and availability of support systems.
Right now, today, I take ibuprofen for the stiff joints, use mega sunscreen, or avoid the sun, sleep at least 8 hours a day, (sometimes in 2 hour naps), eat a well balanced diet and take anti-stress vitamins, and use cortisone cream for those troubling rashes and dermatitis.
More drastic treatments includes medications formerly reserved for malaria, systemic prednisone, and even gold injections. As with my asthma, I personally prefer to use the least toxic, or devastating medications...until there are no other options.
Support groups are also key. A lot of information is available on the Internet, with newsletters and local chapters actively seeking to share information and comfort those that worry this might be the kiss of death.
In its most severe and virulent form SLE can result in blindness, limb amputation and kidney failure. But for the majority of sufferers, you can expect chronic symptoms, as outlined above, (there are others, these are mine, as an example), and occasional flares.
I'm not planning to stick my head in an oven any time soon.
Working full time and devoting another 20 hours a week to Epinions reading, writing and rating keeps me busy, active, and with my mind firmly not dwelling on my own body aches and twinges. As a Registered Nurse I enjoy sharing information, teaching and helping others. Makes my own little problems seem just that, and let's me appreciate the many good days, and health that I have.
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Member: Casey Stewart
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