My name is Crystal and I am living with systemic lupus.
In November 2009 I was a happy and healthy bride looking forward to an active and promising life. On my honeymoon in the spring of 2010, I started showing symptoms that no one had an answer for: at first my face began to swell, and then my hands and feet as well. The doctors thought it was an allergy but I was so tired all the time I was falling asleep at the wheel – I thought it had to be something else. The biggest indication that it was lupus was the classic butterfly rash I got on my face. In August 2010, I was officially diagnosed with systemic lupus erythematosus (SLE). The medication I was put on made me lose my hair – I used to have full, thick hair but all of a sudden half of it fell out and I had bald spots everywhere. In the summer I got blisters on my face, neck, chest, arms and hands from the heat and sun, and my joints were so sore and swollen that I couldn’t even open a door or a water bottle.
I wanted to start a family, and once I was more stable I became pregnant with identical twin girls. It was a high-risk pregnancy, but everything was going well until December of 2011: I went to bed feeling tired and sore (which is common both during pregnancy and for people with lupus), but when I woke up I couldn’t breathe. Within two hours my husband had to rush me to emergency, and I was placed in the ICU in critical condition with strep pneumonia – a recent increase of medication to combat a kidney issue had masked my symptoms so my body didn’t tell me I was extremely sick until it was too late. My blood pressure dropped dangerously low and the doctors had to put me in an induced coma to help my body rest and relax. They prepared my family for the worst, as they did not think I would make the night. My babies were delivered while I was unconscious but, because of a lack of oxygen, I lost them both. I spent three weeks in the hospital, ten days of which were in the ICU, and I went home for Christmas with empty arms.
Lupus is the disease of a thousand faces, which is why it can be difficult to diagnose – some people wait years for a diagnosis. Lupus does not present itself with the same symptoms or severity in everyone. It is a complicated disease, and one of the struggles of living with an invisible illness is that you don’t necessarily look like you are sick. People sometimes tell me they know someone with lupus who is doing fine, and while I am sure that is true and am always happy to hear that a lupus patient is doing well, how long did it take them to achieve remission and feel “fine?”
My husband and family have been extremely supportive throughout my journey and we have accepted that pregnancy poses an extremely high risk for my health. We have adjusted our future plans and dreams to find joy in our relationship, our pets, and our active lifestyle, and we are open to whatever our future holds for us. I eat healthy, exercise, and do everything I am told to by my healthcare team. I am getting stronger everyday, and I truly believe with positive energy and getting the awareness out there that we will find a cure and I can continue to live an active and promising life.
Thank you for taking the time to get to know me and my story!
With sincere gratitude,
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