In 1993, my mom who was an avid walker couldn’t shake a sharp, persistent pain in her leg.
Due to the persistent and sharp nature of the pain - with seemingly no explanation of
injury - they tested for numerous ailments, cancers and syndromes and all came back negative.
The doctors were befuddled and at that time, an inexpilcable illness was scarier than an explained one - it could only mean one thing.
They told her they needed to test her for HIV and told her to have a very candid talk with my father, and our home life was shaken up even more than usual for the moment.
Right in the heat of this, they told her that she had a rare disease - Interconnective Tissue Disease - a painful marriage of Lupus and Rheumatoid Arthritis, which they diagnosed as stress-induced. My grandmother - whose mother, my grandmother - had also been diagnosed with lupus in the 80s but hers was medicinally-induced lupus. Still, there had to be a connection, right? And, what would that mean for me, we all asked?
My mom suffered more pain than most people should have to and finally went into remission in the 2000s - after she and my father had divorced...and, the stress seemed to divorce her as well, leaving her with no symptoms.
What I know about lupus is this.
Every person living with lupus - or, whose family is living with lupus - has their story to tell.
Even a few weeks ago, at the Lupus LA annual fundraiser - the Hollywood Bag Ladies’ Luncheon - at the Beverly Hilton where women purchase couture bags for a steal to raise money for research and services - as we rode the elevator to our cars, fellow guests and I swapped stories.
“I had lupus but am in remission,” one young woman said. “It was hormone-related and when I had my daughter, the symptoms no longer had me!”
“Lupus can be hormone-induced?” I thought.
I told them my mother’s story.
One woman told me she believed her mother had “gotten lupus from eating too many alfalfa sprouts.”
I’d heard of this association before but it still sounds like an odd Grimm’s fairy tale; yet as a girl in her teens who craved alfalfa sprouts on her salad a with two matriarchs who suffered lupus - I all of a sudden lost my appetite for my sprouts.
I then told them of my grandmother’s story with lupus to which they replied, “Medicine-induced lupus? We’ve never heard of such a thing!”
Here’s the thing.
There is so much more to learn about this painful, debilitating, mood-crushing, energy-sucking, soul-shaking disease.
There is research that needs to be done and there is public knowledge that is still just not out there.
@LupusLA was formed over a decade ago to change that.
I am so grateful to be welcomed into the Lupus LA family by @periellenberne and founder @adamselk and I look forward to many more “family fundraising meals” together where we can share our stories and share our strength.
I hope to be of service to this foundation the way it is of service to so many in our community. — at The Beverly Hilton.
