Natalie W. - Diagnosed at age 35
My name is Natalie. I was diagnosed with lupus in 2016. My PCP was doing my full work up of blood work and tested for everything with hope we would get an answer. When she called me in to go over results, she explained my ANA was positive for lupus. I was referred to one of the top rheumatologists. She is amazing! My initial symptoms were butterfly rash and swelling in my joints and edema.
My current symptoms are a lot worse now. There are days I can barely walk, cry in pain just to get out of bed, barely sleep, bad rashes on my neck, my hairline in my face, ears, eyes, etc. Fatigue, hearing loss, and more. I would like others to know that keeping a log/journal of your symptoms, questions for your doctor, take pictures of rashes, swelling and show everything to your rheumatologist.
Also to hold on! Try and stay positive the best you can even when you feel it’s impossible. Learn about foods that can cause your symptoms to enhance etc. Lupus has affected my life in so many way. In the beginning it wasn’t as bad but the past two years I’ve been in constant flare ups, some days I have to work from home, I have to cancel plans with family and friends at times. It worries my 2 daughters. They are teenagers now and are so helpful and supportive!
As for my future pray that my doctors can get flare ups under control. What has helped me manage my lupus is not missing any dose of my medication, keeping a log of everything, being able to reach my rheumatologist 24/7 etc. I have signed up to become an advocate, looking for a team to work with, I joined many groups online for lupus, spread awareness on my own via my Facebook and Instagram pages but I want to do more! I want to bring it to Washington! I want to set up events and help others who have lupus. I wouldn’t wish this disease on anyone!
What gives me hope? My doctor gives me hope, and my family. The main hope is that I know there is more to be done and more can happen to help LFA and all of us with lupus and do more!