It was exactly a year ago when everything changed for me. On May 10, 2011 I logged on to check my bloodwork results. I scrolled down, and stared at the screen. And the floor dropped out from under me.
I had a positive result. Which, in the medical world, is a very big negative. I had a positive ANA. Which is a screening test for lupus.
But let’s back up a little. It all started a few weeks prior, with a little aching in my right elbow. I didn’t think much of it. Too much time on my laptop, maybe. And then, a few days later, I started to feel a little soreness in my right knee. Then my left knee.
Things were not trending in the right direction.
More joints became involved, until I could ignore it no longer. I had distinct pain, and stiffness, in both elbows and wrists, both ankles, knees, and hips. Then, a little redness about my elbows and ankles. And definite, visible swelling.
It was time to see my doctor. I booked an appointment for three days’ time. And during those three days, my symptoms became even worse. I was trying not to freak out. Trying very hard, but not particularly succeeding.
The problem, of course, with having a career in medicine is the knowledge. All the scary possibilities reared up in my imagination. Rheumatoid arthritis. MS. Lupus. Various other connective tissue disorders…
When I finally saw her, my doctor shared my concern. Which was both relieving and worrisome at the same time. I wasn’t imagining it. Also? I wasn’t imagining it.
So we did some tests. X-rays and bloodwork. The x-rays came back normal. Good. The initial bloodwork results came trickling in. Thyroid somewhat off, thyroid antibodies elevated. Low iron. Low vitamin D. It was strange to see my own bloodwork coming back abnormal, I’d always been generally healthy. But none of that stuff was alarming. None of it was stuff I couldn’t deal with.
A few days later I got the result I most definitely could not deal with.
That positive ANA.
I remember staring at the screen. My husband and my dad were making lunch and chatting in the kitchen. My dad was visiting to help us out because I was, at that point, entirely unable to do anything for myself or my children.
I started to cry. The crying got worse, and louder, as that result began to sink in. Me? Lupus? Suddenly, everything I knew about life had changed. My whole life would now be measured in two segments, before lupus, and with lupus. Nothing would ever be the same.
Again, I was simultaneously thankful for, and cursing, my knowledge base. I’d seen people with lupus, watched them deteriorate before my eyes. Lupus was a nasty disease, I knew that. It was a forever diagnosis, but unpredictably waxing and waning. It could affect every aspect of life and function. Cause end-organ damage at a whim. Force the use of potent medication that caused side effects almost as bad as the disease.
It was a terrifying moment.
But shortly after that initial terror, a few things crystallized for me. Life was going to take on a new shape. First, I was not going to do shit I did not want to do anymore. Also? I was going to do shit I did want to do.
Over the subsequent weeks, I saw two rheumatologists and an endocrinologist. There were few answers forthcoming. But one thing they hesitantly agreed on? This was not, in fact, lupus. They weren’t impressed at my antibody numbers. Said my results weren’t specific enough.
A huge relief. For the time being. Because then I entered a different world…the world in which I embraced the unknown.
I had more x-rays taken. Much more bloodwork. My doctor (bless her) called me regularly to check on me. For a while, things continued to worsen for me, physically. My joints became enormous, swollen and painful. Sleeping was very difficult. And the red welt-like lumps grew over my ankles, legs, and elbows. Erythema Nodosum, I thought, looking at the welts and nodding. I went to see my doctor. Erythema Nodosum, she said, on sight, also nodding. Not a diagnosis, per se, just a symptom that was all part of my nonspecific inflammatory flare.
I developed an annoying cough. A dry, irritating cough that seemed to correlate with worsening joint pain. I lived on anti-inflammatories. And, like the bad patient that all good doctors are, I resisted taking the prescribed prednisone. It was a line I was not ready to cross.
My mother wanted answers. “If we could just get a diagnosis, find out what it is…then we’ll know how to treat it.”
I nodded, but I knew the naiveté of this statement. Autoimmune diseases are multitude. There are endless categories and labels, and lots of ‘not otherwise specified’ tags on the ends of otherwise specified names. I knew that many people go years without a firm diagnosis. “I was misdiagnosed for a long time,” they say, clenching their teeth at the conspiracy.
But I know that “misdiagnosis” is really only a relevant term when you’re talking about stuff that’s black and white. And that medicine, the human body, is the exact opposite of black and white. Stuff evolves. Stuff changes. Stuff becomes more obvious, and then we’re in a position to pin down a diagnosis. There are no perfect tests, rarely any textbook cases. Often, the only time we know for sure what happened in someone’s body is when we cut it open at autopsy. And even then, there’s a whole lot of deductive work that goes on. This is all especially true when it comes to autoimmune disease, which shapeshifts to its heart’s desire.
So I prepared for a long period of not exactly “knowing”. But, just because I didn’t have an exact name for the maelstrom that had taken over my body, didn’t mean there was nothing I could do.
I knew that my immune system was freaking out. I knew that my body was going on inflammatory overdrive. And I knew I could do something about that.
So I started taking care of myself, I mean really taking care of myself. I knew about the physical stuff I could do. I needed to get more sleep. I needed to start eating more veggies, more fruit, more whole grains, more superfoods. I started taking vitamin D, and omega-3. And selenium. Incidentally, I suddenly understood the desperate patient’s plight oh-so-well, in a way I’d never experienced before. The urge to take supplements. The urge to do something—anything—to grasp on and hope that I’d discovered the thing that would make me better. I was grappling for the reins of control. Just as I’d seen so many patients do, sitting across from me, sitting in the cheap examination room chair while I sat in the comfy, expensive desk chair. And now I was in that cheap chair.
I couldn’t exercise. I was getting passed by the octogenarians who live in my neighborhood as we walked the snail’s race to the village. I’m not kidding. Literally, I was lapped by seniors with walkers. But I started doing yoga. I could barely do any of the poses at first, could barely move, really, but I still managed to spend a couple of minutes doing deep breathing, meditating, and very gentle stretches.
Significantly, I started exploring the less tangible aspects of health. Mostly, stress. I had been under a lot of stress. New baby, living through major house renovations, putting tons of pressure on myself to work and be a great mom and wife…plus my own writing aspirations. It was too much.
I started reading a lot about stress, which led me to reading about happiness. And that has revolutionized my life.
And then…as the weeks went by, things peaked and began, ever so gradually, to improve. About three months after things started, I was mostly back to normal. Physically, anyway. Psychologically, I would never be the same. In a good way.
I don’t know what improved things for me. Was it the omega-3? Was it the yoga? Or was it just the natural course of things; would I have gotten better on my own?
The rheumatologists, at last, agreed on a diagnosis. Most likely, I’d been battling a thing called Lofgren’s Syndrome. A rare form of a rare disease called sarcoidosis. Which is classified as an idiopathic autoimmune disorder. Idiopathic, here, meaning: no identifiable cause. Read: we have no freaking idea why it happens.
In me, maybe stress triggered it. Maybe not. You know what? It doesn’t matter. I knew I was too stressed. And whether the stress caused it, contributed to it, or was merely an innocent bystander…I knew I had to do something about it.
One year later, is everything exactly as I want it? Nope. I’ve been symptom free since everything settled in the summer. Am I stress free? Not exactly. Am I blissfully happy? Ummm, not quite. But you know what? It’s pretty damn close. Do I have a perfect lifestyle?
Well…it’s getting there. And that’s okay, because it’s a work in progress. A healthy lifestyle isn’t something you just turn on overnight. You work at it. I’m working at it.
A big milestone for me? I started running. At first I wasn’t sure this was a good idea. My husband was nervous for me, didn’t want me to do anything that would stress my joints, for fear of things coming back. But…so far, so awesome.
And I embrace the uncertainty every day. Because although the rheumatologists believe Lofgren’s syndrome to be the most likely diagnosis, there’s still a chance it could have been—could be—something else. Something that could come back. Like lupus. See, I read their consultation letters. There was lots of room for reassessment should my symptoms recur.
To be honest, it’s hard not to freak out every time I get a little twang in a joint, now and then. But, in a way, it’s a good thing. It certainly keeps me from taking my health for granted. Those little twangs serve as momentary reminders.
Health can be snatched away, even one evening while you’re sitting there on Twitter and your elbow starts to ache a little. Taking your health for granted is a mistake we all make. But I’m working on correcting that, and enjoying my good health every day.
Just the other day I jogged swiftly past a pair of seniors ambling along with their walkers. And my heart soared. Of course, I know I’ll be just like them one day.
But not yet. Not just yet.
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