I Have Lupus

The first time I noticed my fingers changing colors was my junior year of high school. It was January and I had just finished my last final for the semester. I was outside with a group of my friends waiting for my dad to pick me up when I looked down at my hands. They were pale white and they hurt, bad. They felt like they were burning, but burning like when you touch something that’s too cold. I tried to blow on them to warm them up because they felt like ice. Then they began to turn blue. As the pain continued, my dad told me with a straight face not to worry, that my fingers were just falling off. Then he had to calm me down after I convinced myself I had frost bite and was going to be fingerless. Luckily, the pain subsided and my fingers soon looked and felt fine. I forgot all about my little episode until it happened again — and again and again. I resigned myself to the fact that I would have this same experience every time I got cold. I never got it checked out because there didn’t seem to be any lasting damage. My fingers didn’t fall off and it only happened when I was cold. No big deal, right? But that was just the beginning.

A year later I was at the gas station. I went inside to give the attendant my money and he said to me, “What happened to your face?” What happened to my face? I had no idea what he was talking about. I shot him a look, grabbed my money off the counter and went straight home. I looked in a mirror and sure enough there was a pink circle the size of a quarter on my left cheek. It seemed so odd to me. Where did it come from? It wasn’t raised, it wasn’t itchy and it didn’t feel like anything. It was just a patch of pink skin. I was completely freaked out. Then a week later, I had a pink patch on my right cheek, just by my cheekbone. I finally went to the doctor.

“You have Lupus”, the doctor told me a few weeks later, after they had biopsied my skin, tested my blood and seen my fingers change colors for themselves. What I thought was just a case of really cold hands was actually Raynaud’s Disease, a common symptom of Lupus. Raynaud’s causes the smaller blood vessels of the skin to constrict thus limiting blood flow to the skin. So when my fingers were turning blue that was actually them being starved for oxygen. The skin rash was also a Lupus-related symptom.

My disease, Lupus, is a chronic, autoimmune disease that causes inflammation of the tissues and can affect any part of the body, like my fingers and the skin on my face. Basically, what happens is the immune system becomes confused and attacks the healthy tissues of the body causing different types of inflammation and produces many different symptoms. There are four different types of Lupus. I have Systemic Lupus Erythematosus. This is the type of Lupus that can affect anything from the skin cells to the heart and brain. Other forms of Lupus are either drug-induced, develop during pregnancy, or only affect the skin. Sadly, there is no cure for Lupus, but most of the individual symptoms people with Lupus experience can be treated.

Over the years my Lupus has become more aggressive. I’ve developed joint pain in my knees and hips. My Raynaud’s has begun to affect my toes and my ears. My face rash has spread and I’ve started to suffer from migraines. I also become overly tired very easily. Sometimes I don’t want to get out of bed because I feel like I could sleep for the whole day or because my knees are throbbing — but I don’t let it stop me. I exercise, I try to eat better and I am always on the search for new vitamins and supplements that can help my joints to feel better. Unfortunately, I have had no luck with steroid treatments for my rashes, but I am able to cover them well with makeup. My migraines can be controlled with medicine and I am generally healthy.

The only thing I truly miss out on because of my disease is a tan, not that tanning is all that healthy for anyone’s skin, but I miss having a nice bronze color during the summer from lounging at the pool or beach. Sunlight can cause new rashes to develop and triggers terrible migraines for me. I try to stay out of the sun as much as possible so that I won’t develop any new rashes. I am that girl at the beach under a hat and umbrella with a shirt on. SPF 50 is my best friend! My family is also really big on the outdoors and they love to sit outside in the summer, something I can’t do as much. This year they bought a big red umbrella for our deck so that I can sit outside with them.

I’ve been lucky so far to have not developed any heart, lung or kidney complications and I hope that by staying active and healthy I can keep my Lupus in check. Sometimes it’s scary to think about what my Lupus could turn into and what it could do to me. I don’t want to develop breathing issues or experience kidney failure. I’ve recently been told that I’ve developed a heart murmur. It’s possible that it is due to my Lupus or it could just be an unrelated, benign murmur. Yes, one day my Lupus could cause my death, but hey that’s life. No one gets out alive, right? The only thing I can do is keep living and let whatever happens happen; I’ll take it as it comes. No matter what Lupus has in store for me, I will be ready for it.

Photo: iStockphoto

Tags: i have, illness, lupus