Just weeks after my first daughter was born here in Los
Angeles, we packed up and headed to our old hometown of Boston. My father-in-law was terminally ill,
and we knew having the freedom to spend my maternity leave with our family during
his final days was invaluable.
So, when I started waking up with sore wrists every morning,
I kept things in perspective. I
paid attention to how I was sleeping, to make sure I wasn’t straining
them. No new mother ever has a
free hand, but I tried to give mine whatever break I could. I massaged them. I stretched ‘em. Still, no relief.
When I finally spoke up, my mother (a retired RN) suggested it
might be tendonitis from holding the baby. This seemed completely plausible, but somehow I knew it
wasn’t the case for me. My
discomfort was mirrored, identical in both wrists. I knew that if this were related to the position in which I
was holding my tiny daughter, or her bottle, one side would be significantly
more affected. Back to the drawing
board I went.
Some time later, back home in Los Angeles, I saw my general
practitioner. He said exactly what
I suspected he’d say, which is just what my mother had suggested (typical). Tendonitis. Though he suggested a regimented schedule of Advil and
icing, I skipped it. I waited
however many weeks it was that he wanted me to hold out before a follow-up visit
and returned, still uncomfortable.
Leaning toward arthritis, he referred me to a rheumatologist.
Fast forward through my first visit with her, and the agony
of waiting for test results that we all are too familiar with. I have a vivid memory of working late
in an edit bay at The Bachelor when her office called. I excused myself, as an after-hours
call from the doc is never good.
My bloodwork looked fine, she said. No arthritis. I
did, however, have a slight positive for Lupus.
As anyone familiar with autoimmune disease knows, they are
very difficult to diagnose. Even
the blood test I’d had was a slight indicator of the disease more than anything. There were still several factors to be
considered, over time, before a real diagnosis could be made. Also of great significance was that I
was still post partum, when anything you are already prone to can flare, so
time alone may have healed me. But
it didn’t. My symptoms worsened.
It was nearly two years of a watchful eye before my
rheumatologist was 100% convinced that I have Lupus. Though there is little I can do to protect myself against
the toll the disease can take, I am thankful to finally call it by name, even
if that name is one people have heard so little of that they are unsure of what
it means or how to react when I mention it.
The bottom line is that I knew in my heart (and joints) that
something wasn’t right, and wouldn’t let that be dismissed. It isn’t always easy to trust your body
first and foremost, but the alternative is a sad and dangerous one.
Today is National Rare Disease Day, intended to increase
advocacy, awareness, support and education of such illnesses. I hope that attitude continues for the
next 364 days of this year, and onto the next. And you can help.
