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The day you find out that you have lupus is a day you’ll always remember. It sticks with you like remembering where you were the day Elvis died. It is like a dividing line between the “normal” days before and your “new normal” afterward. Everyone has different symptoms that lead them to make that first appointment. Mine came when I bought a treadmill and could only walk for 3 minutes before I was gasping for breath. I used to walk two miles a day so I knew something was wrong. I made the appointment with my doctor, but I already knew she was going to tell me I needed to lose weight. I was prepared for that, I wasn’t prepared for her sending me to the lab for two dozen different blood tests.
It was two weeks between the tests and my appointment to discuss the results. I dreamed up all kinds of things it could be, but never considered lupus. Unless you know someone who has it, you have probably haven’t even heard of lupus.
Most of my results were normal or negative, so when the ANA was positive, it really caught my attention. I thought it was a good thing. Turns out, it’s a marker for Lupus. I didn’t realize those three letters were going to change my life.
It’s natural to want to read everything you can find about your new chronic illness. You want to be proactive and understand what all of these blood tests are for. You’ll also be visiting a lot of specialized doctors: a rheumatologist, pulmonologist, pain specialist, ophthalmologist, dermatologist, cardiologist, neurologist, ENT, and gastroenterologist.
You need to know what part each of these doctors plays in your treatment. And finally, you’ll be getting prescriptions for drugs you’ve never heard of before. You’ll need to figure out what each one is supposed to do and how to know if it’s working for you or not. You’ll become a specialist in your own health. After all, nobody knows your own body better than you.
All of this information is just a few clicks away. But with the Internet, the sheer amount of reading material is overwhelming. And sometimes, it’s outdated or just plain wrong. You have to be careful who you trust. Pay attention to the background of the website or the person writing the article.
Talk to your primary care physician. A good one will become your best source of information but will also be open to listening to you if you have a concern or want to try something new.
I doubt that anyone has ever wanted lupus but I can think of many things that could be worse. Getting the right combination of meds has taken some trial and error. I have good days and bad days. But I’m learning to live with it. Like it or not, lupus is here to stay.
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