All Posts tagged lupus

Remembering D-Day: When I was diagnosed with lupus

Ann Loyola

Ann Loyola

The table was set, the wine was poured and sipped, and now my friend was serving us each a bowl of creamed carrots spiced with ginger and turmeric, all topped with roasted pumpkin seeds.

“I’m serving an anti-inflammatory meal for us,” she told me; one inflamed person to another.

My friend, who I’ll call Empress in this story because she really is an Empress, is marking her two-month anniversary of Diagnosis Day.

In my friend’s case, the diagnosis is rheumatoid arthritis. R.A. is incurable, painful, debilitating and potentially fatal. Treatment plans vary according to the individual and healthcare provider. The disease, like many autoimmune illnesses, flares and then quiets like the hesitation between Fourth of July fireworks, making you wonder if each display is another burst of sparks or the blazing finale.

Anyone who has had a medical diagnosis of a nasty disease knows that this particular day will stand out among other days. For many, D-Day can offer a strange relief. Finally, there’s a name for all of the unexplained pain, dizziness or whatever bewildering symptoms. On my D-Day, my first thought was “Hey, maybe I’m not crazy after all.”

On my D-Day, my first thought was
“Hey, maybe I’m not crazy after all.”

I’d had two years of odd rashes on my face, legs and arms. My fingernails warped and rippled. I was always tired. My joints felt like balls of fire. My ribs and heart were sore. I was depressed yet caring for a 7-month-old son while pregnant with my daughter. When my physician called me at home one evening with the results of my most recent round of blood tests and told me that I definitely had systemic lupus erythematosus, I was almost delighted. Finally, a name! Finally, a reason! Finally, a treatment plan!

Albumarium_Woman's-hands_Web

Photo credit: Albumarium/Chiara Cremaschi

The odd euphoria of D-Day ebbed quite a bit when I realized that remission was not around the corner and that the coming years would require that I change my expectations about certain facets of my life that I thought were part and parcel of who I am. Or was. Or will be.

Still, if I were to place SLE in one hand and my old self in the other, I would hold on to the Me with SLE. I used to let little things get to me but having this disease has forced me to see life from a different perspective. I don’t get ruffled easily. I avoid drama. I appreciate more. Sure, I miss out on some things due to pain, fatigue or my sensitivity to sunlight, but what I do have I hold more closely to my heart than I think I would have pre-SLE.

Empress is moving from the shock of D-Day through the grief of losing a part of yourself without really knowing what the part will be. Yes, there’s a reason for today’s blinding pain and the mental fogginess. The question really is all about tomorrow and the days after that.

Of course, no one knows from one day to the next what will be gained or lost. I would argue that for the most part, most people can live with the belief that tomorrow will be much like today in terms of physical and mental capacity.

For the person with a “Diagnosis” it’s virtually a certainty that each day will be uncertain. Sometimes, I see myself as an adventurer going into each day and night with hope and curiosity. Other times I’m grumpy and tired. We all build our own way of adjusting. I don’t know what the Empress will build for herself as an outcome of D-Day, but I’m hoping it will be a crystalline outgrowth: reflective, illuminating and precious.

Do you have a story about your D-Day that you’d like to share? Let me know in the comments below.

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Good Choice, Bad Choice: How a trip to Banff reminded me I need to eat anti-inflammatory diet

Cole_Banf

So we took a family vacation to Canada a few weeks ago, which I arranged in my usual bright and cheery manner.  I saved a little money, arranged the RV rental, reserved the campsites, packed up the kids and husband, and off we went.  I made it very clear — in a bright and cheery manner — that all family members would be happy, appreciative, and helpful throughout the entire journey; turn that frown upside down — quickly — or be given RV dump duty.

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