A Call to Arms (& Faces, & Eyes, &…)
When I was first diagnosed with lupus, I was told I was lucky. I had a mild case–it could be worse. Rather than feeling relieved, however, I felt slightly horrified. My initial symptoms were totally debilitating. People had it worse than me?
The more research I did, the more I found that, yes, people do have it worse than me. So I feel lucky, relatively speaking. But even so, lupus is tricky. When people ask me to describe the symptoms of lupus, I always pause before saying something about arthritis, fatigue, and then trailing off as I mention that it’s a little different for everyone.
Besides that, my symptoms are never static. In fact, it was difficult for my doctors to diagnose me in the first place since I didn’t neatly fulfill the 4 of 11 criteria that apparently must be present simultaneously in order to officially have lupus. At any one time, I had 3 symptoms, and some of them (such as scleritis) were dismissed by my doctor as unrelated.
Yes, in the beginning, I felt lucky. Lucky I didn’t have the butterfly rash across the bridge of my nose that is so predominately associated with lupus. Lucky my kidneys weren’t shutting down. Lucky my subsequent flare-ups have never been as awful as the initial one.
I was so confident about my mild-mannered case that I was only slightly put out last February when it seemed I was going through a bout of acne. I haven’t had skin problems since I hit puberty, so I suppose I didn’t really know what to look for. So I used clay masks and exfoliants and bit my lip when it burned. And my treatments made the lesions worse.
As winter moved into spring and then summer, I began to suspect my mild-mannered friend was behind my little indignity. There was something about the cyclical nature of it that made it seem more sinister than acne. First a cluster of raised, red bumps appeared. Then they broke open and scaled over. Then it started anew, right there amongst it’s scaled-over brethren. It’s been going on for 6 months.
I visited my mother last month, and she asked me to try Metrogel, a medication she’d been prescribed to treat rosacea. (*I don’t recommend taking any medications without consulting a doctor first, but it’s my mom…) Her theory was that since rosacea is thought to have its roots in autoimmunity, then perhaps her medication would work for my skin condition as well.
So I applied it to the affected areas of my face (it burned like hell on any open sores), and 10 minutes later, the redness was almost gone and the bumps and general swelling had decreased. So now I apply it twice daily, but it’s effectiveness wears off during the day. The photos I’ve posted are of me post-Metrogel.
I still feel lucky. After all, it’s just skin. And other people who suffer from more severe cases are probably playing the world’s smallest violin for me. But I want to share these photos of my skin–not to compete for who has it worse, and not for sympathy–but to let others know, who are quietly freaking out in front of their bathroom mirrors, that they’re not alone.
There seems to be more information to explain what’s happening to my face than there was just two years ago. But there’s still a dearth of information. So let’s put it all out there, my fellow lupines. Let’s flood the internet with our experiences, so that others can see the variety and subtleties of this disease and learn how to better treat it. Please share your photographs on this blog or on your own.
Because none of us is actually lucky. But we all have a reason to keep going. So let’s keep going until we’re able to speak in hushed tones about the “dark ages” of lupus research, when treatment options were limited (and primitive) and a cure was just a vague hope.