I've mentioned before how this post really affected me, and I've thought about writing my own version of it for a very long time. I've written it in my head millions of times. In fact, if I'm totally honest, I've daydreamed about writing a bestseller, and going on Oprah to tell the world my story. I even had a title picked out. It would be called Ugly.
But the truth is this: I haven't written that book (because what I have to say can fit within a blog post), Oprah's show is over (I was never the biggest fan), and I am not ugly (not in the true sense of the word).
But I do have scleroderma, and it does affect my face; so at times, just like most women, I have felt ugly. I have scleroderma, and it affects my face. My face, the first thing people see when they meet me. I have scleroderma, and it affects my face.
Scleroderma is a rheumatological, autoimmune disorder that affects the connective tissue of the body. It manifests itself in various forms, and the catchphrase for the Scleroderma Foundation is "The Many Faces of Scleroderma" because, quite simply, there are so many varying factors within the disease, and each person's experience is incredibly different.
I was officially diagnosed in 2003, but I've probably had scleroderma my entire life. Not much is known about the cause, and research is constantly being conducted to learn more. In my case, the disease attacked the collagen on the right side of my face, leaving a large indentation on my forehead and severely shortening the roots of my lower right teeth. Doctors use the term, en coup de sabre ("mark of the sabre"), to describe the linear scleroderma I have, since it can look rather like the patient has been struck in the face by a sword. Nice. But, other than the cosmetic issues that come with this collagen loss (dry, sensitive skin, hating having my picture taken, and the possibility of my teeth falling out), I've been extremely fortunate and have remained quite healthy.
I do have an overactive thyroid, which is common among scleroderma patients, and both of my pregnancies were considered high-risk. Both of my unplanned c-sections were probably due to scleroderma, and since the boys' births, I've suffered from fairly severe, random joint pain that is now mostly under control. I undergo an annual echocardiogram (topless, under a paper vest, while the male technician and I chat about our children) to look for signs of Pulmonary Hypertension, a serious secondary issue for some scleroderma patients. And the other day, I had 12 vials of blood (ouch!) taken from my arm by a nursing student, just to figure out if the weird bumps on my fingers might be digital ulcers.
To say that scleroderma affects my life is an understatement, and time-wise, it amounts to a part-time job with lots of labs, tests, and doctors' appointments. But I am not scleroderma, and it does not define me. It is a part of my life, and I have to deal with its consequences, but I have so many other interests (like this blog!) that are, well, interesting, so I like to focus on those.
I willingly admit that having facial involvement is incredibly hard at times, especially for a young woman, but I've shed many more tears over the scar on my abdomen (which nobody sees but my husband and me), than I have over the abnormal parts of my face.
Several years ago, I met with a wonderful consultant for Jane Iredale Cosmetics, a company that provides what is known as "camouflage" makeup, and she carefully showed me how to cover and disguise what she called "my distraction." I will forever be grateful to Jane Iredale for giving me more confidence, and since I'm such a beauty product junkie, I have so much fun experimenting with products and playing up my good features, like my eyes.
I know that beauty is in the eye of the beholder, and even though I feel like I'm advertising my health issues literally, with a sign on my forehead, some people don't even notice. Last year, I saw a new doctor who was young and wore hipster glasses, and he mentioned that he saw the affected area around my mouth. I was kind of shocked, because yes, it is there, but it's most noticeable on my forehead, which he didn't even see.
I love fashion and makeup, and I try to look my best, especially when going to the doctor. I think it makes such a difference, and when I feel good about myself, others see it, too. I had my regular thyroid labs drawn recently, and the phlebotomist asked me about my forehead. I told her about having scleroderma, and then she offered me $500 for my eyelashes. I spent the next five minutes giving her a lesson in applying mascara, sitting there with a needle in my arm. It was probably the most fun I've ever had during a blood draw, and all thanks to a little Maybelline Great Lash.
I guess the point of this post has been to reveal my vulnerable side, but to show you that I'm okay, too. My family and friends know that I have scleroderma, but they also know that I have more interesting things to discuss, like my favorite book, or that new lipstick I just bought, or the fact that Rhys has chosen the occasion of his second birthday to start talking in full, understandable sentences.
When people ask, I'm ready to answer. That's the teacher in me. It's just not my favorite topic because it's kind of boring (who wants to talk about connective tissue all day long?), and there are so many other things worth seeing and doing. So you won't find me waxing poetic about scleroderma regularly on this blog. I might mention it from time to time, usually in the context of something much more fascinating, and there's a label for it over on the right. This makes post number four, so you can see how often I write about it. And I'm not in denial (how can I be when I see it every day?), but it's just one part of my life, and a pretty small part, at that.
I guess I just wanted you to know.
I have scleroderma, and it affects my face. But I am not scleroderma, and it does not define me.
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| Top Left: February 2009, with post-pregnancy roundness in my face. Top Right: April 2009, really skinny after postpartum thyroid issues. Bottom Left: December 2011, picture ready with makeup and mascara. Bottom Right: June 2012, my good side. |
