Lupus Is…

May is Lupus Awareness Month, so I wanted to share a little bit about what lupus is. When the doctor first told me that I might have lupus, I had to look it up on the internet, and I’m sure there are many others who may have heard the term but have no idea what it means.

For starters, lupus is a chronic autoimmune disease. The immune system becomes overactive and attacks healthy tissues as if they were bacteria or viruses. It is characterized by pain and fatigue and inflammation, which can affect pretty much any part of the body–heart, lungs, kidneys, skin, joints, connective tissues. The symptoms vary from person to person and can change over time, making it challenging to diagnose and treat. The most easily recognizable lupus symptom is the “butterfly” rash across the nose and cheeks, though not all lupus patients experience it. (The name “lupus” is derived from the Latin word for wolf, because the rash resembles the bite of a wolf.)

Lupus is not contagious, and it’s not a form of cancer, but it’s sometimes treated with immunosuppressant drugs that are also used in treating cancer. Lupus predominantly affects women, and the onset is typically during the childbearing years, although men and children can also develop the disease. It is more likely to affect people of color than Caucasians.

I was diagnosed with lupus in February 2011 at the age of 34, but my initial symptoms–pain and stiffness in my hands–began in my late twenties. At first I thought it was osteoarthritis, because my mother has severe early-onset osteoarthritis in her hands. But in January 2010, my left eye became inflamed due to episcleritis, which my eye doctor said might be an indicator of an autoimmune condition. I was referred to a rheumatologist and began a year-long series of blood tests. It was a relief to hear early on that I didn’t have rheumatoid arthritis, but then he mentioned the possibility of lupus…and my life was forever changed.

Lupus is a disease of “flares” and remissions. Symptoms come and go, and sometimes you get new ones. You never know where the inflammation is going to show up next–it seems to make the rounds through my joints and connective tissues, it has returned to my eyes a time or two, and this spring it settled in the corners of my lips! I pray that it leaves my internal organs alone–that’s where the real danger lies. Sometimes you know what causes a flare (a stressful event, not taking care of yourself properly, being out in the sun, etc.) but sometimes it comes out of the blue with absolutely no warning.

Lupus is exhausting. Basically, your body is fighting against itself, and that’s very draining. The fatigue is unlike any I’ve ever experienced–it’s an ache throughout the whole body that almost feels like the flu. On those days, it’s best not to push it. So if I have to cancel an engagement at the last minute, don’t take it personally!

Lupus is learning new healthy habits. You can’t skimp on sleep, and there are some days I just can’t make it without a nap. You have to be careful not to overstimulate the immune system since it’s already overactive, so some “healthy” things (like taking extra Vitamin C during flu season, eating garlic, etc.) can actually make a person with lupus more sick! I’m trying to cut back on sugar and carbohydrates, which can increase inflammation, and eat more fruits and vegetables. Since sun exposure can cause a lupus flare, I stay out of the sun as much as possible (but that isn’t exactly new for me, since my natural skintone can best be described as somewhere between “artic white” and “cotton boll”). I’ve also learned that regular exercise is an absolute must to keep my joints moving and my stress levels in check.

Lupus is learning to cut back and say no. I’ve always had trouble with overloading my plate. My daddy used to step in and put his foot down when I committed to too much, and he specifically instructed my husband to do the same when we got married. But lupus put an end to that tendency. When you know that doing too much will cause you to feel absolutely miserable and that you will be unable to take care of your responsibilities while you’re sick in bed for a few days, you learn to live within your limits.

Lupus is also a reminder to do what’s most important and to enjoy life. It has taught me that my time and energy are valuable and finite, so I need to prioritize the things that are meaningful and leave out the rest. I have also learned to give myself grace on the days that I don’t feel good. Most of all, lupus reminds me to be grateful and to fully enjoy the gifts within each day.

On Friday, May 19th, I’ll be “putting on purple” for lupus awareness. For more information, visit the Lupus Foundation of America at or I’m so excited that we have a new lupus support group in the Dothan, Alabama, area and that we have a walk scheduled for September 16 at Westgate Park to raise funds for lupus research!

A Season of Rest

Our 3-year-old had pneumonia last fall and spent the week of Thanksgiving in the hospital. We ate our turkey and dressing and turnip greens on a hospital tray…but honestly, it was delicious, even more so because we were about to go home! (I’ve spent several holidays in hospitals…and all I can say is, God bless the nurses and doctors and staff who give up precious family time to serve those who are sick.)

That Thanksgiving Day I was more keenly aware of God’s blessings and more thankful than ever before. My little one was alive and on the mend! We’d had a few very tense days…including isolation due to suspected MRSA as well as the possibility of being transferred to another hospital for surgery if the pleural effusion (fluid that had collected outside the lung) formed an abscess. Thank goodness both of those scenarios turned out to be only a scare.

She took it all in stride–the IV, the blood draws, the X-rays, the ultrasounds, the CT scan. (I think Doc McStuffins prepared her to face all of that without fear!) As long as Mama and Oscar the otter were by her side, she could be brave.

A few days after we went home, my blood pressure shot up and my lupus symptoms flared. That’s what stress will do for you. But a situation like that will also stop you in your tracks and put life back into perspective.

I mentioned in my last post that we’ve been through some intense trials during the past three years. They followed each other so closely that there was never much of a chance to stop and catch our breath or really rest. I had no choice but to keep putting one foot in front of the other…you know the feeling. That’s exactly what I needed to do during that season to help myself and my family get through those things. But when we came home from the hospital on Thanksgiving Day, our little one had barely enough energy to sit up on the sofa. It was time for something other than just-keep-moving-and-doing-the-next-right-thing. It was time to rest. We all needed it.

Because I have lupus, I try not to overcrowd my schedule, I have to take occasional naps, and I’m used to saying no to extra activities. But for this season, I needed to cut back even further to allow extra downtime for us to recover.

It was the best thing I could have done. Christmas was the simplest it’s ever been…and it was even better without all the stress! I thought life would return to normal after the holidays when she was strong enough to go back to preschool. But she got sick again within a few weeks, so her doctor recommended that we keep her home for several more months to allow her immune system time to rebuild.

I think we all needed this time of rest to be restored. We’ve had our share of ups and downs during this season, just like any other, but we’ve been better able to cope with life’s demands. (And my blood pressure returned to normal, too.) I feel more alive and at peace than I have in a long time.

If you’ve been in a difficult place and feeling overwhelmed, just trying to survive…I commend you for keeping your head above water and just getting through it. I also highly recommend giving yourself the restorative therapy of slowing down. It can be difficult to cut back, but the benefits far outweigh the sacrifice. Even a small change can make a big difference.

A season of rest is good for more than just the body…it’s also healing for the soul.

“The LORD is my shepherd; I shall not want. He makes me lie down in green pastures. He leads me beside still waters. He restores my soul.” Psalm 23:1-3a (ESV)

Some Things are Better with Age

when my parents brought me home from the hospitalIn a few days, I’ll be turning 40.

And I’m pretty happy about it!

Do I feel over the hill? Are aches and pains starting to creep in?…well, they’re really nothing new. I’ve had arthritis since the age of 28 and lupus since 34. (If you don’t know what lupus is, it’s okay, I didn’t either until I was diagnosed with it…I can tell you more about it later.) Am I dreading the thought of reading glasses?…not really. My eyesight has been an increasingly complex issue since kindergarten, with four surgeries already and more on the horizon. I’m just thankful that I still have vision!

Maybe I’ve actually been over the hill for a while…

I don’t think I’d turn the clock back, though, even if I could…because 40 comes with so much freedom!

I don’t have to worry about what other people think of me. I am who God made me to be, and pleasing Him is my aim.

I don’t have to compare myself to others, and I don’t have to feel like I don’t measure up. I have a unique set of strengths and weaknesses, and so does everybody else.

I don’t have to say yes to every opportunity that comes my way. This was a big one for me. Lupus has taught me that it’s not only okay, but healthy, to say no…without guilt.

I don’t have to despair when my expectations aren’t met. They probably had no basis in reality anyway. Good times, bad times…they all come to pass.

I probably “knew” these things when I was younger, but it was so hard to actually live by them then.

Yes, I’m glad to be turning 40. In some ways, it suits me better than 16 did.

“For everything there is a season, and a time for every matter under heaven…He has made everything beautiful in its time…” Ecclesiastes 3:1, 11a (ESV).

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.” 2 Corinthians 4:16 (ESV)