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.

6 Responses to “A Call to Arms (& Faces, & Eyes, &…)”
  1. lupusadventurer says:

    Most of my first symptoms stayed, or recurred occasionally or frequently as signs of flare. I have only had a couple of bouts with pleurisy, but it is a big one in the list of 11 diagnostic criteria. Rashes on my face, hands, torso and scalp stayed mostly only on my hands and occasionally on my face, but discoid rashes have always been less severe and mostly controlled once I started on the Plaquenil (Hydroxychlorquine.) Proper treatment helps quiet all the symptoms, except during a flare, which usually requires a short-term boost of steroids.

    I agree, writing is a great coping mechanism. Besides, it can help, educate and encourage others, too!

    • lupinelife says:

      Plaquenil has done wonders for me, especially when it comes to arthritis. So far my doctor has been firmly against trying steroids, so I try different things to treat my symptoms. Have you ever tried any alternative medicine/therapy?

  2. Lemon-Aid says:

    Hi there, I had a similar experience 18 years ago when I was first diagnosed at age 35… and I’d never had acne before. My problem was a little different because once the “acne” disappeared that area turned brownish and darkens if I’m in the sun too long or miss that spot with sunscreen. At my age it now basically looks like an “age spot” the size of 1/2 a dime on each of my cheeks (not horrible but not attractive without make-up). So hang in there and even if the sunscreen is a bit greasy, keep it on those spots and you’ll thank me in about 20 years 😉

    • lupinelife says:

      Thanks for the info! I try to be good about sunblock (but I could definitely be better). It’s hard for me tell if they’re leaving small brown spots behind, or if it’s just another freckle… Either way, I’d like to keep my face from getting more spots! And thank you for the encouragement–my face has been clearing up a lot over the last week, and it’s a welcome relief.

  3. lupusadventurer says:

    Your rashes seem bad enough! My first symptoms of lupus were facial rashes, arthritis, nose & mouth ulcers and then I got pleurisy. I had other symptoms but didn’t know they were related. All the diagnostic criteria do not have to be present at the same time. It is cumulative. This is why it is good to have a doctor that you have some history with, so he or she can see the pattern of multisystem involvement. You have a great start to your blogging efforts. Keep writing!

    • lupinelife says:

      That’s been something I’ve been discovering along the way–that some of my other symptoms are related. It’s funny because it surprises me every time, too. Did the first symptoms you experienced stay with you, or did they eventually go away for good? And thank you for your encouragement; writing has become a big part of how I cope!

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