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Lupus, What You Need to Know

Waking in the morning to ankles that cannot support your weight can concern any woman, especially when you have an eight month old to nurse and a six year old to get off to kindergarten. Adding to the complications was numbing in my toes and a very dry mouth that seemed next to impossible to quench despite chewing gum and drinking bottle after bottle of water in a few short hours. After days of confusing symptoms I was forced to make a trip to the family physician. He ordered lab work and did some tests that seemed standard. After a few days of waiting for results I was told my ANA (Anti-Nuclear Anti-Bodies) came back positive with a Titer of 1;650 but inconclusive on everything else. This was the year 2001, and the start, unbeknownst to me, a very long journey. I was told by my doctor that it could be Lupus. I had never heard of lupus and could not quite understand why some disease would be named after a wolf? I researched ANA results and lupus but nothing really flashed red sirens.

Time went by, years for that matter, and another baby was born in 2004. I seemed to struggle with constant exhaustion but blamed it on being a mom of three and not getting much sleep. My achy bones seemed to be a part of the process of reaching my mid-thirties and lugging bags and kids around. I would get odd skin rashes and sores in my mouth and ongoing arthritis pain, but again, it just became a part of everyday life. How many of us have physical ailments that affect us daily or weekly that we just shrug off as being human and fragile? Interesting enough, after my second son was born in 2001 my grandmother in-law told me that she had a terrible feeling about my health. She told me that I was not supposed to have more children and that I may not survive another pregnancy. I blew it off to an extent, but I never forgot her words, especially in the year of 2007 when my 4th child was born and I had just had my third C-section and 4th baby. Now I really was living the life of no sleep or down time for relaxation. However, this was no ordinary recovery from having surgery and I was an ordinary woman no longer.

On the morning of March 6, 2007 (My 35th birthday) I was rushed to the ER for severe pain in my skull and weakness so extreme that I could not stand on either of my legs. I had an underlying fear that something was very wrong. I insisted that the ER doctor run extensive lab work but he only medicated me and sent me home with some ibuprofen once the pain had subsided. I did not have insurance at the time and was not capable of paying the cost of countless tests. After returning home with a newborn I had become aware that I could not move my fingers or hands to even change his diaper. I was carried from room to room and my infant slept next to me and was handed to me to nurse because I was incapable of holding my own baby.

I was so scared that I might not make it another week like this. I was totally unable to be a mom to my other three children. It was time to take my health into my own hands. If a doctor was not going to take the time to find out why I felt as if I was dying, then I was. My only hope was my ex-husband who was a chiropractor, to order lab work for me at a local lab in town. I researched what blood work needed to be done to diagnose lupus and gave him the list to request. It is a difficult disease to diagnose because symptoms can be vague, and unlike some other diseases, it cannot be diagnosed with a single lab test. However, when certain clinical criteria are met, lab tests can help confirm a diagnosis of lupus. Blood work and other tests can also help monitor the disease and show the effects of treatment. For six years I wondered why I couldn’t keep up with my friends and family, for six years I felt crazy; like I was just creating these horrific symptoms. Finally after waiting a long week for my lab results, my blood came back with another positive ANA and this time with a high Titer of 1:650 and other tests confirming complement levels off the charts, including many other notable signs. I held my paperwork in my hand and slid down the wall of the office in tears as my teenage son watched me take in the news. I now look back at that day wishing I hadn’t broke down in front of him like that, but the tears I was crying were not out of fear.  The tears I cried were out of sheer frustration and relief that I finally had answers I had been begging for. The unknown seemed so much more tortuous. I was armed and ready for the journey with an auto-immune disease because now I knew I was capable of being in control of my own health.

According to CNN Health, there are four types of lupus, but you hear most about Systemic Lupus Erythematous, a malfunction in the immune system in which your body becomes its own worst enemy. Skin, joints, lungs, kidneys, the nervous system, or blood pay the price. Each year, more than 16,000 people in the United States are diagnosed with lupus—90 percent of them are women! Scientists suspect that hormones play a role because most women are diagnosed between ages of 15 and 45, and lupus seems to strike during or following a pregnancy.

Symptoms include fatigue, fever, joint pain and stiffness, chest pain, memory loss, and skin lesions. Most people experience flares—worsening of symptoms that may later improve or even disappear completely. Lupus is confirmed if you have at least four of these symptoms: a facial rash or rashes that appear after exposure to the sunlight, painless mouth sores, kidney disease, and swelling of the lining around the lungs or heart, and low counts of red blood cells, platelets, or white blood cells.

For mild cases, ibuprofen and naproxen can reduce pain and swelling in joints and muscles and antimalarial drugs like Plaquenil, have been proven useful in preventing flares and controlling the disease’s progression. Corticosteroids counter inflammation, but they can have long-term side effects. Increased physical activity and emotional stress may trigger an episode too, so learning to balance activities and emotions is an important part of coping with the lupus. It also states in the article that diets rich in omega-3 fatty acids and alpha-linoleic acid(found in flax-seed) may also help reduce inflammation associated with the disease.

Experts say more women than we know walk out of doctors’ offices feeling that their symptoms haven’t been taken seriously. They are told that their complaints are all in their heads or that everything will be fine if they would stop worrying. Women know something is wrong but can’t get the help they need, often have an autoimmune disorder, which occurs when the immune system attacks itself. One in five Americans has one, and three-quarters of them (about 22 million) are women. Some women live with unbearable symptoms for 10-15 years before finally getting the right diagnosis and treatment. I was not officially diagnosed with lupus until 2010 when I was finally under the care of my first rheumatologist. I also, finally, had insurance so I’m sure that made all the difference. That was 9 years I was left in the abyss of the unknown and confusion, don’t let this happen to you.

Health experts say you must educate and empower yourself by learning the names, risk factors, symptoms and treatments for the most commonly misdiagnosed women’s illnesses. Then push your physician to take you seriously.  The following are a list of tests that need to be conducted to help diagnose lupus:

Complete Blood Count (CBC)

Erythrocyte Sedimentation Rate (ESR)

Complement Levels

Antinuclear Antibody Test (ANA)

Lupus Anticoagulant Antibody Test

 

Elizabeth Cheryl, Published Author/Writer

About elizabethcheryl

Published Author of The Summerland Novel Series

Discussion

2 thoughts on “Lupus, What You Need to Know

  1. Thank you for sharing your struggle. Similar story here. Every symptom since my hysterectomy in 2011 has been put down to my being: a woman, a mother, a student, overweight, depressed, hypertensive and 48. I never seemed to recover from the surgery, just felt tired and sore. In January, I had to quit school, i could not focus, i could not remember anything, and everything hurt. A week later, I found a lump on my flank. I got flu. With it, I got a cold. I felt like I was going to die. The lump got huge and hot. My bones started to ache even more, I blamed the mattress, my diet, my weight. Every major joint began to feel like I had knives driven in them. Doc told me the lump was a cyst, the pain was bursitis and maybe tendonitis. And I was exhausted because I’m an old fat woman and she implied that I was attention seeking.

    The dermatologist now tells me my lump is a sub-cutaneous T-cell lymphoma (a slow grower, Thank God) and my ANA results indicate I may have SLE. You would think being told I have a rare and weird cancer and an autoimmune disorder would freak me right out, but no, I had the same reaction. I went to my car and cried in relief that it wasn’t me being crazy or lazy or any of those other things, but it was real and I now have something to work with.
    I’m just at the beginning, wrangling with the retired military health care system. Having insurance doesn’t always make things easier, I’m afraid!

    It’s helpful to know that there are others out there dealing with the same trials, so I don’t feel that I’m walking alone. I second your call to be your own advocate. I looked over my records and there have been signals that something was not quite right over two years ago, it just wasn’t not quite right enough for busy docs to notice. After all, what are the odds that a woman with increasingly debilitating health problems has SLE? It seemed easier to blame the patient, assume I wanted attention, and send me on my way. But I’m not bitter, I’m just anxious to get the ball rolling so I can get better, or at least learn how to manage my symptoms.

    Posted by mrsallnut | May 3, 2013, 1:50 pm
  2. 2I have a family friend that has severe lupus. She has 4 kids, all under the age of 12. She has days that shes ok and other days where she is not. With her having lupus, we have found a walk for the cure and a support group.

    Try these websites for more information:

    http://www.lupus.org/newsite/index.html

    Posted by Dominique | May 9, 2013, 4:17 am

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