The month of May is both Lupus Awareness and Military Appreciation month. I was fortunate enough to sit down and have a very personal and transparent interview with a beautiful black woman that is currently battling Lupus and who is also a military spouse. She was able to shed light on how Lupus has affected her and to educate others on her reality of such a unique disorder. According to the Lupus Foundation of America, lupus is an autoimmune disease that can damage various parts of the body not limited to skin, joints, and/or organs within the body. Lupus is more common in people of color with 90 percent of people with lupus being women and is more severe among women of color according to www.lupus.org
How were you diagnosed with Lupus? Did you have any early signs?
My official diagnosis didn’t happen until 2012. But the “journey” started a year before that. In 2011, I went to my primary care provider for a routine physical and had lab work done. At my follow-up appointment, my doctor stated he was baffled by my labs and wanted to refer me to a civilian provider for a second opinion. He said that my lab work reflected that of a 76 year old woman. At that time I was 29 years of age. He referred me to a rheumatologist and a hematologist. At that point I had no idea what was going on or what was “wrong” with me. As for early signs, I didn’t have any. But now that I think back on it, I see that the signs were there such as soreness and fatigue. I just assumed I never got enough sleep and that I was out of shape.
Take me through a normal day for you living with Lupus?
Normal? What is normal? My life stopped being normal a few years ago. Living with lupus has changed me and made me more conscious of the fact that I am not superwoman. That in itself was hard to swallow. I still have a household to run with two children and a husband who is active duty military. My mommy duties and responsibilities have not changed. I just have to take everything one issue at a time, one day at a time. I have good days and bad days just like anyone else. I take 5 to 6 different medications a day, depending on the day. I will admit, I have my days where I say forget it I don’t want to take them. But on those days my body reminds me of how important it is to take my medication. Taking breaks is also very important. I have learned that it is ok to say not right now, or give me a minute. Excessive walking, climbing (stairs) etc… on a given day can mean the bed rest the next day. Although I love the outdoors and the beach, I have to limit my time outside. I have become photosensitive and too much sun causes a rash, regardless of how much sun block I bathe in. Night time can be rough for me. I have insomnia so sleeping doesn’t happen a lot. In fact most days I usually get 4-6 hours at most. Trust me, I’m tired. But sleep does not come easy.
Before your diagnosis, were there any known family members that were diagnosed with Lupus?
The only diagnosis of lupus I even knew about other than myself was my cousin. She is the daughter of my mom’s sister. But I didn’t really know about her lupus or what type she had. I had no idea and still don’t know exactly how lupus affects her.
Since your diagnosis, did you have to change up your diet or daily activities that you once enjoyed? Are there any foods that you can no longer have in your diet?
Daily activities have changed, but I’m stubborn. I don’t like having to adjust my life because of a disease. But I do have to limit my time outside. I have been told to lose weight and that has been a struggle. I have been on the steroid Prednisone since 2011. I have gained about 30 lbs or more (not sure exactly) and it is hard to lose weight. Exercise would help with my overall health, but the joint pain and soreness is very discouraging. I have not given up any foods, although I should. My dairy sensitivity has become more of an allergy. However, lupus itself has not caused any changes in my diet.
How has this impacted your family and your life prior to your diagnosis?
I tried to not let lupus have an impact on my family or my life. I was somewhat successful until 2014. My kids knew I had a “disorder” but I would not let them worry about me. When it came time to get clearance for a permanent change of duty station was when the reality of this disease hit me. I had no idea that it could affect my husband’s career. At that point I was placed in the EFMP (Exceptional Family Member Program) and we had to make sure any assignment he wanted to take had the care necessary to take care of me.
Since moving to Nevada my health has changed. I wouldn’t say it’s gone downhill but it has definitely changed. The stress of relocating and living in the desert has definitely taken a toll on me. I have had to accept the fact that I can’t work a normal job. My fatigue is annoying. Not even sure how to express that feeling. It is frustrating. I want to be “normal” like I used to be. But I can’t. I get tired, and sore and miserable. I have to accept that I have limitations. How do you tell that to someone who is not ok with just sitting down and letting life happen?
Did you have any knowledge of the disease prior to being diagnosed? If so, what were some of the misconceptions you had?
I had no idea what lupus was. I knew my cousin had it but I had no clue what it was. I still don’t know a lot about the disease. I know that no 2 cases are the same. My lupus issues are not the same as anyone else’s. There are people who can’t work and need constant care. And then there are people like me that can “function” somewhat but have limitations.
Since moving to the desert my body has not been happy! I moved from Florida to Nevada, I have yet to adjust.
Having any illness can tear at us physically as well as emotionally? How have you stayed inspired and positive dealing with your illness?
Being honest, staying positive has been the hardest thing for me. I was always an optimistic person until it came to being optimistic for myself. I have days where I am strong and positive. But then there are days where I want to cry because of the pain or the lack of understanding. I will admit that throughout all of this, I have not blamed God or asked why me. I believe that this is a part of my testimony and I am walking through this to be an example or a blessing. Trust me, this is not easy. It is hard explaining to a child why mommy needs to rest or why we can’t do a particular activity. I have found that finding a support group, whether online or in person, is very important. People with similar diagnoses and experiences can make this illness not seem as bad. Having supportive friends and family members help also.
Since being diagnosed, what is something that you learned about yourself that you didn’t know prior to the illness?
I have learned that I am one tough cookie! I have been through many medicine changes and many physical and emotional changes. Side effects can be horrible but laughter can be the best medicine. I have found that I can be a better friend and person when I let people in and help them understand what it is that I am going through.
Lupus is still an illness that is starting to garner mass media attention. What would you like readers to know about lupus? Are there any commonalities that you experienced that are common with other lupus patients?
I want people to know that lupus is real. It is not just in someone’s head. The statement “you don’t look sick” frustrates me. Every lupus patient is different. Try understanding the disease and try being supportive. If my outsides looked like what my insides felt like would you understand then?
I just want to thank you for sharing your personal story with us. This article will reach many and it is my hope and prayer that more people will become aware of Lupus. In recognition of Military Appreciation Month, I would also like to extend my appreciation for your continued support of the military as a military spouses and all the lives that you touch. I appreciate you sharing your time with me and opening up about your illness. Please stay encouraged and thank you again.
Writer: Deffanie S. Rawls