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 got dizzy
and felt like I had run 50 miles. I was getting 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 white 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.
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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