When you have lupus as long as I have, you get to know your up and down times. What I mean by that is you get familiar when you have a lupus flare or the onset of one. Lupus is an autoimmune disease where the immune system attacks itself, instead of fighting off invaders that would cause inflammation and infection.
The cause of lupus is unknown, considering that each person is different. For me, I became ill in 1999 when I suffered from a stroke on a hot summer afternoon. I lost oxygen from my brain and my speech was slurred. Thankfully, I was able to go to my neighbors house to use her phone to call 911 and I blacked out after that.
Back then, I was diagnosed with mixed connective tissue disease, TTP (thrombotic thrombocytopenia purpura) and other things until I was given the official diagnosis of Systemic Lupus Erythematosus in 2004. I have had several flare up and hospitalizations since then, each with its own culprit. For instance, I could be suffering from severe pain in my leg but what I really had was a blood clot.
Sometimes, lupus can be an isolated diagnosis. Systemic lupus affects everything--internal and external organ systems and bleeding disorders. Some may suffer discoid lupus that only affects the skin with permanent scarring (the singer Seal is a great example). Everyone with lupus can in fact have an experience with the infamous butterfly rash across the nose, as I've had before. Entertainer Nick Cannon and Selena Gomez sufferers from lupus nephritis, affecting their kidneys only. Singer Toni Braxton suffers from Systemic Lupus like me. We have to watch our stress levels as that is the number one trigger of a lupus flare.
It took me a while to know the dos and don'ts of what activities I can engage in. One bummer is that I have to avoid direct sunlight and heat. Lastly, I've developed a personal relationship with my pharmacist, so much that we know each other by name. It was kind of embarrassing at first but then I became comfortable because at least they are familiar with my medications.
Good luck to the newly diagnosed. Having lupus can be very depressing as it puts a damper on your social life, depending on how you feel one moment to the next. My main advice is to monitor your symptoms, staying in touch with your specialist and getting much rest. The only thing you can do is take one day at a time--such as life, right?
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Filed under: Lupus