Guest post and photo by Melissa Nguyen.
In July 2015, about 7 months ago, two words changed my life. Before I tell you what they were, maybe you can guess it from my little story.
It was like any other typical day in July with the sun beaming and blinding the passersby. The summer air was so dry that your mouth begins to parch for a few droplets of moisture and with heat comparable to Hades' lair, draining the life out of you. Yeah, a typical day in July - or so I thought.
"Your ANA titers1 showed positive, I think you should follow up with a rheumatologist," my doctor told me. Those words were the ones that I had been preparing myself to hear for 11 years. When I was 14 years old, my 11-year-old baby sister was diagnosed with Systematic Lupus Erythematosus (SLE), an autoimmune disease. The journey to this diagnosis was not an easy one. She had experienced facial rashes that was initially believed to be a sun sensitivity, intermittent high fevers resulting in headaches and vomiting, joint pain, and body swelling. It took several months, hospital visits, and specialist visits before lupus hit the marker and when it finally did, we had to buckle ourselves down for a whirlwind journey. I knew that I had a small chance of having it too so naturally in less than 30 minutes my mind raced towards Lupus. I had minor fatigue, dry mouth and sometimes the sun would hurt my eyes, but I didn't exhibit the typical lupus symptoms such as extreme fatigue, butterfly rash on my face, other skin rashes, swollen or painful joints, unexplained fever, or kidney problems. So what else could it be?
Having seen all that my sister had been through, what my family had been through, I thought - what does this mean for my widowed mom? How do I tell her that her other daughter may also have a chronic illness? I needed a definite answer, so I went to look for one.
After the rheumatologist appointment, a week, and a few more tests later, my answer came, but it wasn't what I was expecting.
I was positive for Sjögren's Syndrome. My first thoughts were, "What is that? " and "Can I still have Lupus?" Then, “What does this mean for me now and in the future?” That very moment, my life changed. Tornado-scooping-Dorothy-to-the-world-of-Oz kind of change.
So I did what anyone in today's society does, I Googled "Sjögren's Syndrome and Lupus." I found stories from others like me, living with Sjögren's and others like my sister, living with Lupus. Some had experienced the common symptoms of Sjögren's such as dry eyes and mouth; others had joint pain, extreme fatigue and digestive problems. Some were as young as 10 years old when they were first diagnosed, others were in their 60s or 70s. Each person was different in age, ethnicity, and gender, all with similar questions and concerns, all with words of encouragement and warmth to one another. Which was exactly what I had needed at the time and what I found encouraging every day as I relearn about myself. I learned to take my time doing certain tasks which now takes much more energy to do. Or how I need to remember to constantly hydrate to make my mouth and throat happy.
Throughout this journey, I was lucky to have my sister to encourage me and really understand the changes I have gone through. Be it my sister or others with a different autoimmune disease, we are united by one phrase and two words:
We are not defined by our disease. We are fighters and survivors.
Sparkle for a Cause PenGems will be available now, and the fundraiser will continue until sold out. 100% of the sale of each PenGem will be donated to the Sjögren's Syndrome Foundation and the Alliance for Lupus Research. Check back for updates, or sign up for the PenGems VIP newsletter here: http://penge.ms/GetOnTheVIPList.
1ANA titers or antinuclear antibodies titers is a blood test used to evaluate a person for autoimmune disorders, most commonly used for Lupus. ANAs are a group of autoantibodies produced by a person's immune system when it is unable to tell apart its own cells versus foreign ones.