My life with lupus

Sabrina NixonLupus is an autoimmune disease where the immune system (originally built to fight off infection) attacks its own tissues, causing potential or permanent damage to internal and external organ systems. There are different forms of lupus such as systemic and discoid. A person with systemic lupus (like me), anything goes when there is a flare up. Internal organs are targeted such as the kidneys (lupus nephritis), blood, joints and muscles.

Discoid lupus attacks the skin directly and leaves scarring in most cases. Singer/songwriter Seal is a prime example of having discoid lupus, as you notice the scar on his face. Discoid lupus (systemic lupus also) leaves the proverbial butterfly rash which covers the nose. This is the reason why the butterfly is the symbol of lupus.

No race or gender is excluded from having lupus but for some reason women in the black and Latino community are affected the most. In rare cases, lupus can affect a person through the use of certain medications and is called drug-induced lupus. Of course, like any other disease, lupus affects people in different ways.

One may experience chronic fatigue while another may experience joint and muscle pain and stiffness. Lupus is called “The Great Mimicker” as it masks many other disorders. For this reason, lupus is hard to diagnose in the beginning. I first became ill in 1999 when I experienced chronic fatigue.

I was tired more than usual and thought it was due to my being a single mom. My two sons have autism and at that time I endured a lot of stress. I thought that if I just got a little more rest, I would be okay. One hot afternoon after going grocery shopping my body felt absolutely lifeless. My speech became slurred but I did manage to use a neighbor’s phone to call 911.

What I didn’t realize was that I had lost oxygen from my brain which caused the slurred speech and incoherence. I also discovered that the weakness I felt was due to a low blood platelet count. Platelets are blood cells used to clot the blood and should be within a certain range in order for the clotting to work.

For instance, when you cut your finger you could easily cover it with a bandage and the bleeding stops. For a person with lupus, the cut would bleed profusely and continuously. I have had several flare ups between 1999 and 2004 which required hospital stays. The term TTP (Thrombocytopenia Purpura) is the term to describe the bleeding I experienced.

I was diagnosed with having mixed connective tissue disorder as well. In 2006, I was finally diagnosed with SLE (Systemic Lupus Erythematosus). In 2010, I was diagnosed as having lupus nephritis which affected my kidneys. The function of my kidneys were fine but the cells started to diffuse. Actor Nick Cannon suffers from this form of lupus. I had three Cytoxan treatments (a form of chemotherapy) for this which required three hospital stays.

The downside of having lupus is the tedious medication regimen you’re on as my life has become a bucket of pills. I comply with this if I want to stay healthy. Aside from the medications, the best way to prevent a flare up is to avoid stress and getting proper rest. These two things are a challenge for me because my status of being a single mom has not changed and my sons have grown older. I now have to step up to the plate emotionally as they are experiencing growing pains and hormonal challenges as well, and I need to know how to deal with this.

If you are experiencing chronic fatigue or joint and muscle pain and stiffness that doesn’t seem to go away, please see a doctor. There is now a lupus antibody that can be detected by a simple blood draw and if it is lupus, the doctor can get you started on a regimen that is best for you.

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Filed under: Lupus

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