Rachel Jackson
Meet Rachel Jackson from Lansing, MI. Rachel has been diagnosed with lupus erythematosus since 2016.
Rachel’s Story:
I showed symptoms of lupus all throughout my life since I was little. But my most prominent symptoms started back in 2014. In the spring of 2014, I lost 60lbs in 3 months completely unintentionally. While trying to figure out why that happened, my primary care provider (PCP) ordered lab work and noticed my liver enzymes were just about quadruple what they should have been. At that point, my GI said I needed a liver biopsy as this was not normal for a 20 year old. My liver biopsy was done in December 2014 and was inconclusive and they couldn’t put their finger on what was causing my liver to have stage 2 scaring and stage 2 piecemeal necrosis. After that, I had influenza which turned into pneumonia and I got hospitalized for 10 days at the end of March into April in 2015. The pulmonologist at the hospital said I had lupus pneumonitis - I followed up with my current rheumatologist at the time and she denied that fact and said no, I didn’t have it. I didn’t have lupus.
As my fatigue got worse I asked for a second opinion and again that rheumatologist said not lupus. When I finally met my third (and current) rheumatologist, Dr. Joshua June at The Great Lakes Center of Rheumatology, he finally said, “Yes! You have lupus!” And I have been getting treated ever since. Dr. June truly saved my life.
Through the process of getting diagnosed, I had many other factors playing in too, I had anemia, terrible joint pain, hair loss, UV sensitivity, and extreme fatigue. I also ended up with a skin biopsy as my skin was getting so bad from the sun and we didn’t know why. After everything was said and done, I got officially diagnosed with lupus in August 2016, as well as Sjogren's, inflammatory arthritis, autoimmune hepatitis (finally figured out my liver biopsy). I also suffered 3 T.I.A.’s which are also known as mini strokes. I tend to say I may only be 29 years old, but I’m definitely 89 on the inside.
What's one piece of advice you would give to someone who is newly diagnosed?: Take a deep breath. Understand that that you have lupus, but lupus doesn’t have you. Stay positive and keep your head up!
What is one misconception you wish you could change about lupus?: The misconception I wish I could change about lupus is that some people may think those that have lupus are lazy, when in fact we are not. We are very fatigued and out of energy. I can understand how difficult that might be for those who don’t have lupus to understand. Which is why awareness is so important!
What brings you joy?: My family and friends truly bring me joy! Without them, I don’t think I’d nearly be as joyful or happy as I am!
Anything else that you would like to add?: I have to keep telling myself to stop overdoing it. That may sound crazy at only 29, but I can’t always do the things that someone my age can can do. I am thankful that my family and friends truly understand that. Also, never stop advocating for yourself like I did. Or have an advocate with you like I did as well. Mine was and still is, my wonderful mom. Also special thank you to Dr. Joshua June and his PA, Lauren Kaylor.