I’M LIVING IN SECRET WITH LUPUS

I turned 28 last week. My friends asked me if I have any goals this year, and I told them I only had one — to be more authentic. So, I want to share something that I’ve never talked about in a social space in hopes of reaching another person who might be going through the same thing. No one should have to go through anything alone.

In August of 2015, I started getting what I thought were bug bites all over my legs. I’d been on a backpacking trip with some friends, and that was the only logical explanation. But these “bug bites” wouldn’t go away. In fact, they got worse and would itch with a pain that I can’t even explain. Sometimes I’d wake myself up in the night bleeding because I had started itching my legs so hard in my sleep.

Aside from the physical pain, my self-esteem was tanking. The spots eventually spread to my entire body from my chest down. My arms and waist and legs were covered in sores — spots that made me feel like a monster. I will spare you all the really gnarly photos, but if you can picture a leopard with a red spots, that will give you a pretty good idea of what I looked like.

I remember going on a work trip to meet with a beauty brand when my spots were at their worst. It was about 100 degrees outside, and I was covered head-to-toe in long sleeves because I didn’t want the spots to show. One of my clients looked at me as we were chatting before one of our meetings and said, “You have such perfect skin.” I did a big LOL on the inside, thinking, “If only you could see what’s beyond my face, underneath all of this fabric.” I think what actually came out was a simple, “Aw, thank you,” and we moved on. Thank God for Nick, who continually affirmed my beauty throughout this entire time.

After months of trying to avoid going to the doctor, I noticed that one of my spots was looking extra bad. It was enflamed, turning from red to purple. I found out from a doctor, who I did eventually go see later in the day, that it was cellulitis. YIKES. He gave me a steroid shot, and some cortisone cream and sent me on my way.

The cellulitis got better after a few days… and then the itchy spots returned with vengeance. This time I visited a dermatologist. He couldn’t identify the spots as anything other than an allergic reaction. On the hunt for a better answer, I called a dear family friend, Dr. Michelle Tucker. She asked me to send her pictures of my skin and forwarded them onto a dermatologist, Dr. Mark Ray, who happened to be my dermatologist growing up in Dallas.

Dr. Ray took one look at the photos I’d sent and immediately knew that it was either psoriasis or lupus. All of this was happening right around Christmas, which I am so thankful for because I was home with family and able to book a last minute appointment with Dr. Ray to have a biopsy done. Upon seeing me in person, he concluded that I had a form of lupus called SCLE, subacute cutaneous lupus. However, it wasn’t until the results came back from the lab that he was able to 100% confirm it.

So there it was — I had lupus. I have lupus.

I had heard of lupus before, but I didn’t really know what it was. All I knew was that it was a scary word that was capable of doing some really bad things to people. Here’s a few quick facts about it, pulled from the Lupus Research Institute.

-It’s an auto-immune disease that over 1.5 million Americans suffer from.
-Although “lupus” is used as a broad term, there are several different types of lupus: systemic lupus erythematous (SLE), cutaneous affecting only the skin and drug-induced lupus triggered by a few medications.
-More than 90% of lupus sufferers are women, mostly young women between the ages of 15 to 44.
-In lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body’s own tissues and organs — the kidneys, brain, heart, lungs, blood, skin, and joints.
-Common symptoms are painful or swollen joints, extreme fatigue, sores in the mouth, sensitivity to the sun, depression, trouble thinking, and/or memory problems.
-While there are no known root causes or cure, the progress of recent discoveries and treatments in development is encouraging.

As said above, the form of Lupus that I have is called SCLE. Because of that, I’ve been spared from some of the more serious symptoms, and it helps that I was diagnosed early / that I’m young and healthy. I found out when I met with Dr. Ray that, while it probably would have shown up eventually, my lupus was likely triggered by the steroid shot that random doctor gave me.

Since being diagnosed, I meet with a rheumatologist in Los Angeles named Dr. Daniel Wallace, who knows more about lupus than any person I’ve ever met. He’s determined to cure lupus during his lifetime. I take an antibiotic daily to keep myself healthy and have a cream that I can put on my spots when the itching tries to turn me into an animal. Miraculously, I haven’t had any scarring and the spots only flare up when I spend time in the sun. I am SO thankful that it’s not worse than it is, and that I feel great most days.

So there’s my story. I’m reminded of this dumb disease today because this is the first day in a while where the itching has been bad and the spots are trying to return. As much as I wish some days that I didn’t have it, I get a lot of peace in knowing what’s happening to my body. It doesn’t stop me from feeling joy or doing things I really love. It certainly doesn’t stop me from thanking God for this body — one that can walk, talk, and move effortlessly.

If you take one thing away from this post, I hope it’s this — don’t wait to go to a doctor if something feels off, and if you can, go to someone you know and trust before letting them medicate you. Last, If anyone reading this has lupus or knows someone with it who wants or needs to talk to someone, shoot me a message. I guess I’m an open book now, and we’re in this together.

See you in the shade.

CREDITS

  • Tara Creel

    Oh no! I am so sorry you are experiencing this. I am currently going through some pretty severe health issues and getting to the bottom of it has been a NIGHTMARE. So glad you got some answers.

  • Maria

    Thank you for sharing your story!