Apr. 18, 2017

Putting PJs to Work

In 1999 I saw my doctor about a rash that wouldn’t go away and was referred to a dermatologist who quickly diagnosed me with lupus. My mother had died two years prior to my diagnosis from lupus complications and I felt like I had just been given a death sentence.

I’d been experiencing symptoms for years — dry eyes and mouth, finger pain, fatigue, etc., — but I never thought they were connected or a sign of something more serious. I’d been pushing myself through pain and fatigue for years and didn’t think of it as abnormal, but once I connected the dots I realized just how much I had been fighting to get through the days.

Lupus has impacted every aspect of my life. Before I can even plan anything I have to evaluate how much energy I have and decide whether or not it’s worth it. When I try to explain the fatigue, people think I’m just tired, but it’s so much more than that. It’s being so exhausted that my side throbs in pain from laying on it all day, but I physically cannot move because I don’t have the energy.

That’s one of the challenges with lupus. I don’t look sick from the outside and since many people know little or nothing about it, they don’t understand the seriousness.

For the past 14 years, I’ve been seeing Iris Zink, president of the Rheumatology Nurses Society (RNS), and she has been such a source of support for me. To explain how I was feeling each time I saw her, I’d tell her how many “PJ Days” I was having each week — days where I was so exhausted I physically couldn’t leave the couch or bed. When Iris said she wanted to turn the PJ Day concept into a fundraiser, I thought it was a wonderful idea and tribute to those suffering from lupus.

I’m so excited to see the PJ Day concept being used to raise awareness and funds for Lupus Awareness Month. I’m very hopeful that I will be able to participate in the PJ Day taking place at Iris’ clinic on May 2 and help spread the word about lupus.

Attention needs to be brought to lupus so that we can increase awareness and funding to advance research for this devastating disease. You can help make a difference by donating to the Lupus Foundation of America to support the RNS Society’s efforts or starting your own PJ Day. You can also create your own unique fundraiser. May is just around the corner, so get inspired by visiting our Lupus Awareness Month page.