What do you want others to know about lupus?
It affects men too! Doctors need to be educated. A Lupus diagnosis does not only depend on blood work, but on everything together. I have been ill for many years and it has taken many years and many doctors to get a diagnosis. I only had 1 positive ANA, but I have 9 of the symptoms from the list, including other positive blood tests.
Why is lupus a cruel mystery to you?
My heart, lungs, bones, eyes, mouth, brain, liver, joints and blood have been damaged. I am no longer working. I used to work 2 jobs, come home and mow my front and back lawns, do some gardening and hang out with my family and pets. Now I use a power wheelchair, am on Social Security disability and can't even do small things without needing to rest. I have to take naps every day and my sock and underwear drawer has become a medication drawer. The whole drawer is full of medications. I now have to go get infusions every 2 weeks then once a month that take an hour. I can't plan anything in advance, since I never know how I'll feel. I am always exhausted. I am a prisoner to my illness!
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