Background/Purpose: My story begins in the ER where I was diagnosed with lupus right after my 22^nd birthday.

For the next 25 years I went from one rheumatologist to another seeking help for my symptoms. Today, I am an ambassador for the Lupus Foundation of America. I facilitate support groups, teach self-help courses and participate in health fairs. During Lupus Awareness Month, I get my hair done in purple and post helpful Lupus info every day.

Looking back, it amazes me how far I’ve come.

At 22 I was isolated and being an advocate for myself never occurred to me. No one in my family knew anything about Lupus so I didn’t have anyone but my doctor to turn to. I think if someone had told me you can speak up and ask questions, my life overall would have been better. But I never had anyone to point this out and for more than 25 years, I never participated in my care.

Getting diagnosed with Lupus at such an early age, means that I’ve been on medication most of my life. While I discovered these medications can have side effects, it was hard to know what was my disease and what may be drug side effects. At one point I gained over 90 pounds.

Intervention: When I started advocating for myself, I realized that my weight was largely due to taking prednisone – not the foods I was eating or lack of activity. Figuring out how I could get off it was one of my first goals, and I’m grateful I was able to find a rheumatologist to help me do that safely. I use this experience to impress upon others: Do not assume anything is your fault, do your own research and don’t be afraid to ask your doctor questions!

Deciding to get off prednisone was a major turning point for me. I started working with a health coach in a program for people with serious autoimmune diseases like lupus, and she gave me the tools to start tracking my symptoms and the data we needed to figure out what was triggering them. I also learned about safe ways to be active and how to manage my flares. Every decision we made was based on my unique case.

Maintenance: I learned that my symptoms are not my fault. I had a lot of guilt and shame carrying around all that weight, and not being able to control my symptoms. Understanding my triggers was a game changer. I’m no longer blindly managing my lupus flares and feel more in control when I go to my doctor because I have personal data to share. If my primary doctor wants me to try something new I always run it by my rheumatologist first. My BENLYSTA nurse recently told me about a “pressure plate” and before I buy one I plan to ask my rheumatologist about it.

Quality of Life: Today I know if I show up for myself, it makes me a better person – a better mother, wife and patient. I also understand there are things that make me sick that are specific to me, and that just following standard advice about “how to be healthy” or what food or supplement to try or not try could even make me sicker. As an advocate, I try to help others understand: when you’re living with a serious autoimmune disease like lupus, if you can’t figure it out, you and your behaviors are not to blame. It can be as impossible as finding needles in a haystack. For me, with specialized tools and support, it was possible to find answers.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/how-becoming-engaged-in-my-care-with-specialized-tools-and-support-helped-me-find-my-personal-lupus-triggers-and-regain-control-of-my-health/