What does a Swedish name combined with a Greek meaning and Latin word for Wolf mean to me? The answer is many years of lab tests and instability of my health. Never knowing when my next period of illness was going to hit. Wondering what was next on “its” agenda to mess with my well-being. Every medical assistant taking my vitals and noting my symptoms asking me to repeat the name of Sjögren’s syndrome and not knowing how to spell it. The follow-up question of ‘Is there anything else I should note?’ To which I lay a secondary disease to the equation to complicate the notes and state ‘Systemic Lupus Erythematosus’(SLE).
The saga started when I was a teenager. I experienced my first symptom that oddly has never reappeared in my later years. My extremities had raised red welts/rashes as well as other general not feel well symptoms. After many patient visits and lab tests the Internal Medicine Doctor diagnosed SLE. Treatment is foggy in my memory but what I do remember is being told to stay out of the sun. Possibly the shock blurred my memory because I was a sun worshipping teenager! All future episodes, considered “flare-ups” were able to be controlled by treating the symptoms. It wasn’t until shortly after delivering my third child did I experience the mother of all flare ups. Knocked my world for an entire year! I couldn’t understand why treating the symptoms wasn’t working this time. After baffling many physicians, misdiagnosed and taking a ton of meds that were clouding my mind I finally was prescribed the steroid prednisone and my world changed. Not only could I properly care for my young kids again, but I felt well enough to take on cleaning my house. I was referred to a rheumatologist who did an extensive lab work up and found out what was different this time is that I developed primary Sjogren’s Syndrome. Treatment plan I’ve been on ever since is an anti-malarial drug called Plaquenil and a few other drugs that trick my brain that I am not in pain which allows me to sleep through the night.
I remember giving thanks that Thanksgiving for medicine. I chose quality of life over what might happen with the toxicity of the drug. Also, made some lifestyle changes in my diet and exercise plan. For two years I was on a vegetarian type diet called ‘McDougall Diet’. Felt amazing, slim and loving life until one day I came out of Lifetime Family Fitness after an intense workout and smelled the aroma from Kentucky Fried Chicken right next door! Don’t judge… but I threw the diet away and caved. Although my diet now contains all the food groups in the infamous food pyramid that a Baby Boomer/GenX was told to follow, I did make some modifications to add sweets (chocolate based of course!) and some alcohol. I still incorporate exercise in my daily routine but just toned down from a Beachbody P90X type.
The concern about what’s next is always on my mind, but I do my best to stay positive and logical because it may not be this invisible illness that gets me in the end. Spelling a Swede physician’s last name isn’t so annoying either.