My Ever-Changing Normal
When you graduate high school there’s this feeling that the whole world is available to you and to all of your dreams. Shortly after I graduated in 2004 at 18, I became sick with an assorted platter of symptoms. While beginning my hunt for answers to my health, I was working in a very busy operating room as an OR Board Secretary and I was in college full-time. There was no messing around with my time. I began making appointments with the best doctors in my area, began a slew of tests, and that’s when I knew I was on a journey, unique to myself, although I was not alone. At that time the internet was not set up like it is today for patients to receive help, answers, and even proper support through stress and scary times. I knew immediately that I had to become my own advocate, I needed to push wherever I could for answers on what was going on with me, and I was thankfully not alone, my mother, who is the hardest working nurse I know, immediately became my advocate and we fought for answers.
My first diagnosis
I was diagnosed with Gastroparesis and Idiopathic Edema a year after my symptoms began. We knew lupus was lurking, also Raynaud’s. My father’s side of the family is riddled with autoimmune conditions, so we knew, even though it would take years for actual diagnoses. Two top general surgeons I worked with looked at me and knew from my appearance and from my symptoms that I had both of those for certain. I was sent to Rheumatology, with the surgeon’s recommendations, and with a positive ANA and bright red to numb white hands, I was turned away for not having proper bloodwork or being textbook for a lupus diagnosis. My diagnosis came in December of 2013, at the age of 26. I was diagnosed with Systemic Lupus Erythematosus, Raynaud’s Syndrome, and to top it off, Fibromyalgia. I was immediately put on four new medications and given a packet of further testing and blood work to complete, I knew we have finally gotten somewhere in my journey as a chronic illness warrior. I knew I would have to continue to change my daily life habits and continue to update my routines from home to work to just outings on days off. I had to update what my emergency bag needed and make sure I was prepared for absolutely anything and everything wherever I was to go.
A new course in life
I knew that my life was forever changed as a chronic illness, but it wasn’t clear just how much it would change at first. It has been a constant adjustment with each diagnosis I’ve been given and with each flare that I conquer. My current diagnoses include Lupus, Fibromyalgia, Raynaud’s, Gastroparesis, Acid Reflux, Reflux Laryngitis, Slow Transit Colon, Idiopathic Edema, Premature Ovarian Failure, Asthma, Chronic Anemia, and Anxiety/OCD. With each diagnosis, I have needed to modify and adjust my life, so as a chronic illness patient, my life has required an extreme amount of flexibility. It’s not easy but learning to take each day at a time is very important and necessary. Unfortunately, I’ve discovered it hasn’t always been easy for everyone in my life.
An ever-changing normal
Through all of this, I have become an RN and then went on and completed my BSN and have worked in multiple levels of nursing in the past 10 years. However, my career has needed to change and evolve with each diagnosis. This has been a hard pill to swallow, not being able to work in the capacity that I trained in, but now I’m working to use my skills and knowledge in other ways. I’m a mother to an incredible 4-year-old daughter who gives me extra strength to always push forward even when it feels hard. I always thought this was my new normal, however after 16 years of being a chronic illness warrior, I have learned that it is an ever-changing normal, and I’m okay with that, because honestly for me, there is no other option.
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
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