I had my second appointment with the neurologist about two weeks ago wherein she pronounced that I had tested positive for lupus. I was not prepared for this diagnosis and knew nothing about lupus, other than her declaring that it was not curable.
She prescribed a second (and long-term) protocol of prednisone, filled out an “urgent” referral to a rheumatologist, and told me I would need to start taking Prilosec to protect my stomach lining from the corticosteroids. She also told me to take calcium and vitamin D3 to protect my bones (I’ve done that for years). Once again, I left the doctor’s office with my head spinning.
The warnings and side effects of Prilosec are just as dastardly as the warnings and side-effects for prednisone. Have you ever noticed how all those lovely little storied drug commercials tell you about how great you’re going to feel for about 30 seconds and then spend the next 60 seconds warning you of the potential harm, including death? Yes, I am suspicious of long-term drug use. When I complained about using one drug to counteract the other drug, and asked if there was a way to protect my stomach with food, the doctor said “no.” I was not happy about this additional substance raging through my system to counteract the fact that my body is already in some sort of crazy revolt against itself. Talk about self-abuse!
So, I was back on prednisone, preceded by Prilosec. By day two of the Prilosec, I felt as if I was doing a remake of Alien. The stomach pains and erupting stomach had only begun once I was ingesting the Prilosec—everything else was the same. I started to think about all of this and recognized that few doctors actually know much about nutrition and food, so this is what I devised: Every morning I take two teaspoons of coconut oil (oily coating, anti-bacterial properties), followed by one tablespoon of chia seeds soaked in hot water to which I squeeze half a lemon (the chia seeds form a gelatinous substance once soaked and the lemon alkalizes the stomach). I also take a turmeric capsule (also has stomach-healing properties). Then I make breakfast, and then I take the prednisone. My stomach calmed down as soon as I stopped the Prilosec. My “gut” tells me I am doing the right thing—and feels a lot better than it did on Prilosec.
Once I was past dealing with the drugs, it took a few days for me to get into research mode about the disease itself because I was going through the five stages of grief, and I lingered in denial and isolation a little too long. If you take care of yourself, the prognosis is good, but there are many terrifying repercussions if you don’t. I am grateful that I’ve already been in self-care mode because I think trying to implement all the big changes I’ve made while reeling from this diagnosis may have sent me straight into a vat of Ben and Jerry’s Volun-Tiramisu (sold only at Target, by the way).
Much had happened since that first doctor’s visit in early March. It took a while for my body to adjust to the medication, but then I had TWO weeks with barely any pain anywhere for the first time in over 15 years. My vision did not improve much, save the double vision diminishing somewhat, but the renewed energy and lack of pain enabled me to accomplish great things during that fortnight: I cleaned house like a dervish, shopped, cooked, and worked with an ease that I hadn’t experienced in a long time. As the dosage dropped, so did the positive benefits. By the time I was at 10mg per day, I was feeling ill again.
On the weight loss front, I changed my eating habits once again. The Fast Metabolism Diet was too complicated and I felt noticeably worse on certain phases. One night I stumbled across the Whole30, a strict 30-day Paleo challenge. I had heard of the Paleo approach, but knew not a whit about it. Once I discovered it, I thoroughly read the Whole30 blog, read several dedicated Whole30 recipe blogs, ordered It Starts with Food, and two cookbooks by blogger Melissa Joulwan, Well Fed and Well Fed 2, cleared out my cupboards and refrigerator, went grocery shopping, and was ready to tackle eating “like a caveman.”
One of the stipulations of the Whole30 is that you weigh and measure yourself on day one of the challenge, and then PUT THE SCALE AWAY. I knew that would be the hardest part for me, so I dutifully placed the scale on a high shelf in my closet. I had managed to lose a couple of pounds since I started the prednisone – not much, but at least I wasn’t gaining as the doctor had predicted. I began the Whole30 more because the lifestyle made sense and I began to suspect that some of the illness and weight gain I’ve experienced over the past few years may have been rooted in the vegan diet I’d adopted several years ago. And… they have a testimonials page that includes relief from various autoimmune diseases (among many other issues).
While on the strict Whole30 protocol, out goes any and all grains and legumes (which includes a lifelong love affair with peanut butter), in addition to the dairy and sugar I had given up months earlier. There is an even stricter version called the autoimmune protocol, but I have already eliminated so many foods, I was content to follow the basic Whole30 program (for now).
By the time I checked in with the doctor again on April 16th, I had managed to lose another 10 pounds in the six weeks since I’d first seen her, and more importantly, I am swimming in my clothes. She was shocked, telling me, “No one loses on prednisone. How did you do it?”
“I went Paleo,” I said.
“Oh. High quality grains and lean protein?” she asked.
“No grains, high quality protein and fats, fruits, vegetables, and limited nuts and seeds.”
“No grains. That’s how you did it,” she proclaimed. I am learning that grains are like that person you think is your friend, and then find out they are undermining you when your back is turned.
As I drove from the doctor’s office, I truly wanted some warm cheesy comfort food to soothe my fragile psyche. Instead, I came home and heated up a grilled chicken breast and some roasted vegetables. Most of the time I barely notice the absence of food favorites, but every once in a while I want a hunk of good sourdough slathered in butter and some olive tapenade. I can eat the tapenade, but it just isn’t the same on a celery stick.
However, I must admit, most of the meals I have been cooking are sumptuous and have no resemblance to a deprivation diet. There are simply foods you don’t eat because they don’t support your health, and then you eat however much you want of the approved foods until you are satiated. Pretty straightforward—and one less thing for my scrambled brain to have to process. It does require a little online shopping for some difficult to find items (try finding fish sauce in a grocery store without added sugar!), and more time in the kitchen (I do a lot of prep work once per week), but other than that, easy-peasy.
Once you are past the Whole30 (I have extended mine to about Whole45), most Paleo practitioners follow an “80-20” rule: they eat strict Paleo 80% of the time and “whatever” 20% of the time. Since I am dealing with an illness and trying to lose weight while on this damn medicine, I am adopting a “95-5” rule for this part of the journey. However, I will be celebrating my birthday this week with some indulgence—perhaps I will eat that bread—or even a slice of birthday cake!
Somehow I have managed to lose 37 pounds since the middle of January in spite of illness, weight-inducing drugs, and the emotional roller coaster of this manic ride. I know thin people get lupus too, and losing weight isn’t a cure, but it can’t hurt, right? I have struggled with whether I wanted to write about all of this or not (hence, the long silence). However, I have found great comfort in the experiences of others across the web in various ways: dealing with an autoimmune disease, finding “alternative” healing practices, adopting a healthier eating style, recipes, inspirations, and more. Maybe my story will shine a light for someone else.
I see the rheumatologist in early June and will know more then, but I am already stronger in my resolve to recover my health through lifestyle, not long-term drug use. And the Paleo lifestyle—it is not really considered a “diet”—has been pretty easy overall with some truly remarkable benefits. I have developed some strategies that I will be sharing in the coming weeks in case your own eating habits (health?) could use a makeover.
So, yes I’ve been thrown, but I am back up and punching back.