The Diagnosis…Now What?

One night a few years ago, I noticed an ad on the Internet asking “Could You Have Lupus?” I took the quiz and answered the questions and the results were, talk to your doctor, you may have lupus. No, I said. I’m just stressed and tired and I put it out of my mind.

A few months later, my right hand and arm suddenly swelled up and I could not bend my fingers. If I tried to move my fingers, it hurt. I went to the doctor after nothing seemed to relieve the swelling and I began a battery of tests to determine what the problem was. Was there a blockage to my lymph glands? No. Was it linked to the shoulder surgery I had had a few years prior? No. Were my nerves working properly? Yes. I had an MRI, x-rays, and the whole 9 yards. No answers. I went to a “hand” specialist. Eventually, my doctor suspected rheumatoid arthritis and sent me to a rheumatologist.

All this time, the joint paint had increased to a dull pain level that never stopped. I was born with Beta-Thalassemia, so I was used to some level of pain and I kept going even though I was having more pain and I was getting more and more exhausted from the simplest things.

I could not stand on my feet and lecture my students for longer than 10 minutes before I became dizzy and felt like I had run 50 miles. I was becoming more and more cranky and ill-tempered since exhaustion and constant pain were becoming a steady part of my life as were the persistent rashes.

I had inexplicably begun to have rashes on my chest and I thought it was from wearing silver necklaces and I had stopped. But I broke out no matter what kind of necklace I wore and soon, even if I wasn’t wearing a necklace!

After two visits to the rheumatologist, she said to me very matter of factly, “You have lupus. It’s a low level right now, but it’s there and you have it,” and she moved on to another subject like it was nothing.

I felt like I had been slammed in the face. I couldn’t think. I just heard those three words, “You have lupus,” and I froze. I thought of people I knew that had lupus that had died. Was this a death sentence? Much later, I realized that I had not stopped her and asked questions.

I went to the internet again and began to look up all the information I could find. Did this have anything to do with all that I had been through? The problem with my hand, the rashes, coughing, heart racing and the pain? Was it why my hair grew so slowly and was suddenly so thin?

I found this information: “Lupus is an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart, and lungs.”

Under normal function, the immune system makes proteins called antibodies in order to protect and fight against antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue. This leads the immune system to direct antibodies against the healthy tissue – not just antigens – causing swelling, pain, and tissue damage. (* An antigen is a substance capable of inducing a specific immune response.)” (Medical News Today)

Sometimes I think it‘s just a cruel joke and that it’s not real. Then I reach to pick something up and that biting pain in my arm is REAL. I wake up feeling like someone took a baseball bat to my whole body and it takes me a while to get going. Or I go for a walk on a good day and I get halfway home and the fatigue hits me like a sledgehammer and I wonder how I will make it home.

A visit to the doctor drains me so completely that I have to force my legs to keep going and to ignore the pain and the fatigue and somehow I make it home and up the stairs to my bedroom and I fall into bed just barely able to breathe. I ask myself again: Now what?

Lupus is incurable. Because it has so many symptoms, it can be difficult to diagnose and it is hard to treat. More women than men suffer from lupus and African-American women more than caucasian women. This makes the fact that the first drug released for lupus works better for white women than black women baffling. Shouldn’t they have worked to help those who suffer the most?

Since there are different strains of lupus, there are different drugs that we are often given to alleviate the pain, the swelling and other symptoms of the disease. But many of us suffer because some of the drugs have awful side effects or really don’t help that much. And lupus is one of those diseases that does not alter the way you look so you may be in horrible pain and still look pretty good. Try telling someone how you feel when you look good. They often think you are either a hypochondriac or just plain crazy.

A cure doesn’t seem to be on the horizon so the importance of both public and private funding to move towards finding a cure is crucial. In the meantime, given that many insurance companies don’t currently cover the wide variety of medications needed to get relief from symptoms of lupus, many of us are forced to find relief as best we can during flare-ups. Living with lupus is difficult but we keep in mind the alternative and we remember that having lupus used to be a death sentence. We find a way to go on and have a good life. We have no choice.

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Brenda Joyce Thompson is a Chicago-based writer and educator who lives a full life penning fiction and promoting the written and musical work of various artists. A walking library of rock music, Brenda is a peace-loving not-so-reformed hippie who misbehaves every chance she gets.

 

 

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Image by Salvatore Vuono: FreeDigitalPhotos.net