Miss Understood: The Face of Lupus

By: Arlene Grau, Columnist

I like to think I eat healthy since being diagnosed with lupus. It wasn't too difficult because I grew up in a home where soda was never allowed and we hardly ever ate things high in sugar.

Since becoming a mother myself I decided organic foods were the best for my kids and greasy, processed items would not be something we would be eating. I notice the difference my diet has made in my overall well-being because anytime I give into temptation and have a cheeseburger, I end up extremely sick and with swollen joints.

Although I have food figured out, I recently discovered that lupus is full of surprises.

Living in Southern California, I know that I have to wear extra sun block to protect me from the sun because I break out in rashes, usually on my arms, because of my disease. This has happened every year, and on some occasions I’d get what's known as a butterfly rash across my cheeks, usually so mild it looked like blush instead.

Two weeks ago I woke up and my cheeks looked like I had been slapped so hard that it left welts and redness. My cheeks not only had a very severe butterfly rash, they were swollen.

I tried everything I had to cover up the rash but the redness showed right through my makeup. I bought over the counter hydrocortisone cream but it didn't decrease the redness, although it did help with the burning.

Washing my face with a brush was making it worse so I had to stop. It's been two weeks and no progress has been made.

I saw my rheumatologist a few days ago because I'm having a lupus flare. Aside from the issue I'm having with the face rash, I've got swollen knuckles, fingers and knees, and a significant amount of hair loss in the last few months. Anytime I shower or brush, I get a handful of hair that falls out or breaks off.

So now I'm taking folic acid, prenatal vitamins and ovation hair therapy pills to try to repair the damage. Luckily, my rheumatologist referred me to a dermatologist at USC and my doctor says they can prescribe something stronger for my face or even inject into the rash.

I've never been the type of person who cared what others thought about her looks until I got sick. Not because I'm sick, but because of all the scars I've acquired since my surgeries. My journey is only beginning. If my rash doesn't get better it will permanently scar my face.

What's the first thing you see when you look at someone? Their face. Since getting my rash I haven't wanted to leave my house. I even missed reading to my daughter’s class because I was too embarrassed to be with the other parents.

This morning I decided I wouldn't wait for my appointment with the dermatologist next week or for the medication to kick in (once I get some). I took matters into my own hands to find a way to temporarily cover up my rash. So, I went into a cosmetic store the minute it opened, found the cutest little worker and explained my situation to her.

I don't know much about makeup because I don't wear a lot, so I was amazed when she explained why there's a green cover up that goes on first, then she applied foundation and after that a powder. The end result had me crying like a baby. I couldn't stop thanking her for what she had done for me. I was Arlene again. I was looking at myself and I couldn't believe it. There was no redness or puffiness; it was the same flawless skin I was used to having before the rash.

It may seem silly, but something as simple as getting my makeup done has completely changed the way I feel about myself. I'm okay with leaving the house to run an errand because now I know how to cover up my rash properly. It's easy for me to cover up my body if I break out in rashes, but my face is always exposed even with a hat on. But now I feel beautiful again.

Arlene Grau lives in southern California with her family. Arlene suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.