Day 9 - Healthy deed: Didn't let lupus fear stop me from trying, and why patience pays off.

Shortly after I was diagnosed with lupus, I started experiencing angioedema, or random swelling, in my lips. No lupus symptom is welcomed, but, to me, angioedema is one of the worst. It hurts, it's ugly, and because it's so visible, it always made me feel really exposed and vulnerable. (You can read about my dislike for random swelling here.

After a few incidences,  I decided to start tracking my diet and lifestyle to uncover any triggers that might be igniting the symptom. (A practice I highly recommend - read about tracking here!) I found that stress, physical pressure to the area, wine, and disease activity were clearly triggers. But I also discovered, with the help of a food diary, that fresh herbs were also triggers. 

Cilantro in my salsa? Swelling. Basil in some tomato sauce? Swelling. Fresh arugula, parsley, spinach, chives, mint - you name it - I was allergic. Suddenly,  I found salads, sauces, and many pasta dishes off limits when I went out to eat. Sandwiches had to be stripped down, and most dishes had to be specially prepared. 

But I quickly learned to live with the herb allergy, as well as the other triggers, focused instead on the relief of knowing how to significantly reduce incidence of angioedema. 

Fast forward several years, two kids and many medications later, and my disease had changed. I was stronger, healthier, and more stable. I had had zero incidence of angioedema,  and decided to start experimenting. Soon enough,  I was able to re-introduce white wine, cilantro, and parsley into my diet. Next came several other herbs, and even frozen spinach, but there were three hold outs - fresh spinach, arugula, and basil. Even the smallest amounts of any would start my mouth and lips twitching and burning (my sign that swelling is coming). 

Even as recently as last summer, I tried just a taste of tomato sauce that I knew had basil lurking within. Sure enough, the familiar twitch began the moment it touched my tongue. The herbs were still off limits. 

But over the winter, I started eyeing those big, bountiful bags of fresh spinach at the grocery store. I recently introduced kale into our family's diet, and I longed to add spinach, too.  A fresh spinach salad, a spinach omelet, or a side of sauteed spinach with a little EVOO and garlic? It all sounded so good. 

So, finally, I decided to take the plunge. 

Prompted by my healthy Deed of the Day program, I decided, that for the good of my mental and physical health,  I was going to give fresh spinach a try.

Over the years, so many of my lupus symptoms felt as though they would never, ever subside. The joint pain, the hair loss, the crippling, constant fatigue, even the angioedema - at times, I was convinced I would never find relief. And yet, here I am, pain free, hair intact, and with lupus fatigue managed with a 90 min daily, afternoon nap. 

So to remind myself that a) lupus isn't in control, b) I no longer live in fear of lupus, and c) lupus symptoms really can subside, I bought a bag of fresh spinach. I picked a day with no commitments, so I could hide away if my experiment went wildly wrong, and chose to do it while the kids were at school. I told my husband of my plan, which he supported. I think he even came to the kitchen to watch. 

I opened the bag, dabbed a spinach leaf with a little poppy seed dressing, and opened wide. 


No tingling.


No twitching.  

Chomp, chomp. 

No reaction at all. Just delicious, beautiful fresh spinach.

You have no idea how excited I was, how relieved my husband was, and how my experiment has changed our lives.

I have a fresh container of spinach in our refrigerator at all times now. I fix spinach at least twice a day. I order it at restaurants, pile it on at home, and am genuinely tickled each and every time I do. 

I am so glad I gave it a try - but happy I did so in a controlled and deliberate way. 

I'm glad I didn't let fear stop me - but I'm thankful for the caution I've demonstrated over the past 16+ years.  

And I'm glad I further dispelled the myth in my head that "lupus symptoms never go away". Yet, I'm proud of the patience I've shown over the years. It's taken a long time, but I can finally cross "spinach allergy due to lupus" off the list. 

Popeye would be so pleased.

As always, please use caution when testing your limits. Consult your doctor, and go slowly. And don't lose hope! 


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