PhoebeAnne
Diagnosed at 26

What do you want others to know about lupus?

You never know what you're going to get. And it doesn't matter what you look like. People often say, "you don't look sick". I have no skin problems and look a decade younger than I am. So, when I am so weak I can't lift my head, or can't finish a project and I feel utterly lazy and useless, I have to remember my body is working against me. Lupus is silent.

Why is lupus a cruel mystery to you?

Lupus has caused me many infections and my symptoms and lab results usually are contrary to one another. My labs may indicate I am sick, while I have no symptoms. I could have symptoms and my labs take several days to show illness. I had no idea how much pain I was living with from my CNS (central nervous system) lupus until I was given nerve drugs. Then, once the pain was abated, the fatigue and malaise became more the exception than the norm. I have symptoms not even marked as being lupus symptoms on the LFA website. I have "white spots" on my brain & require MRIs on my brain at least every two years. This mainly affects my nerves & consequently, soft tissue. Having suffered four urinary tract infections and back pain where my right kidney is last year inside four weeks, I was sent to a specialist who determined my organs were perfectly fine. My lupus acts almost exclusively in simple inflammation. Changing my diet to remove all foods that promote inflammation and consuming those that are anti-inflammatory, has helped a lot. But lifestyle changes, medications, diet, exercise, & sleep may not keep this awful disease at bay. I've always had a low white blood count, which was what led to my diagnosis at 26, 10 weeks pregnant, at which time I also required two units of red blood cells due to thier persistent destruction.

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