A lupus diagnosis affects more than just the patient. Spouses, children, close friends, and even co-workers are changed when a life-altering diagnosis is delivered. While the person with the disease has physical issues, their diagnosis has consequences for those around them. For example, a parent with small children won’t be…
You’d be surprised how many times I tell the story of my tumultuous diagnosis, only to have someone ask, “Then what happened?” It’s like they think I went to bed and accepted lupus as a death sentence. Don’t misunderstand me: Lupus is a killer. If left undiagnosed, it can be…
For years, I have been chasing remission. In my mind, it was the pinnacle. I could envision low to no pain, newfound energy, and no more medications. It was like lupus utopia in my head. Someday, I would be told my bloodwork looked normal, reflecting “remission numbers.” Utopia, however,…
If asked about the one thing that’s necessary when living with lupus, I’d answer “resilience” without skipping a beat. Strength, good doctors, a brave face, and a solid support system would be in the running for second. But in a life with chronic illness, resilience makes or breaks you.
On a recent morning, I was lying in bed checking my emails. There was one from the hospital with test results from my last visit. A few days earlier, I had tried a new medication and landed in the emergency room. It turned out to be a bad reaction to…
Has anyone ever told you that you should never meet your hero? We often have an idea of who that person is, and then when we meet them, we’re sorely disappointed. We’d hyped them up to be a perfect person. Then we discover a flawed human. The disappointment can be…
When I’m in the depths of struggle, only the people closest to me know about it. I need to go through the hardship and come out on the other side before I’m comfortable writing about it or sharing it on social media. I need to prove to myself I can…
I’m sure you realize that someone who has been dubbed a “hurricane” is pretty unapologetic. Forces of nature sweep in, do what they do, and sweep out, never looking back. I was once a hurricane. Now I jokingly say I’ve gone from being a “Hurricane in Heels” to a “Tropical…
My lower legs currently are covered with red spots. It has been so hot that I’ve been wearing capri pants every day. The result is that my legs have gotten more sun exposure than usual. But instead of a nice golden tan, I have red spots. With lupus, I…
Three years ago, I embarked on a journey of knowledge and hard work that has taken me around the world. It changed my life, and I’d like to thank the academy and accept this award … wait, wait, wait! Lupus is not an award. It’s not the result of hard…