The Hunger Games

June 20, 2014 at 10:57 am (Uncategorized) (, , , , , , , )

I’ve lost 76 pounds. Only 24 more pounds to go, and I’ll be back to my weight when I was first diagnosed with sarcoidosis and started on high doses of prednisone to treat the disease in my heart. I never thought I could lose the hundred pounds—or a significant percentage of them—I gained in Chronic Town. Even doctors told me it was impossible. “Not on that dose of prednisone,” the White Coats said.

I once heard a doctor describe prednisone as “the devil’s wonder drug.” It truly has a host of wonderful applications. Children with severe asthma are alive today because of prednisone, or so I’ve been told. But prednisone never cured me of sarcoidosis. In fact, it didn’t even seem to curb the disease’s progress. As though mocking the up-to-80 mg. of prednisone a day I’ve had to take, the sarcoidosis hop-scotched from my heart to my liver to my brain to my bones to my skin. Still, the doctors kept me on the prednisone for fear of what the disease might do otherwise.

The devilish aspects of this so-called wonder drug are its long list of side effects, ranging from loss of bone density to a slowed metabolism to a compromised immune system. It can rearrange the body’s fat distribution, causing the “moon face” and “prednisone hump” that are iconic markers of the drug’s use. But the side effects everyone talks about are increased appetite and weight gain.

Prednisone causes an unholy hunger that is unlike anything I’d ever experienced before. I’d eat a full meal and an hour or two later I’d feel this gnawing inside me that demanded attention. So I’d eat a giant bowl of cereal, which felt like throwing a teaspoon of water on the volcano of appetite uncoiling within me. Prednisone hunger felt like it might kill me. So I ate. And I gained 100 pounds.

My weight-loss started last fall, when I was in the hospital for over a month because of a neurosarcoidosis flare-up. I was so sick and in such pain that I couldn’t eat for days. Anything I’d put in my mouth I’d vomit right back up. At the same time, the years of chemo and other medications finally caught up to me and caused me to develop an ulcer. By the time the doctor had gotten my pain under control and I was ready—and prednisone hungry—to start eating again, my body rebelled against food. Every bite caused burning and cramping. It physically hurt to eat. So I stopped. I’d lost 20 pounds by the time I left the hospital. And I’d learned that I could live with the screaming hunger inside of me. I lost 56 more pounds without the aid of an ulcer to make eating physically revolting.

When people see the newer, slimmer me, they ask, “Did you finally get off prednisone?” No. I’m still on the ridiculously high “maintenance dose” the White Coats deem necessary. So how did I lose all this weight? The short answer is that I learned to live with the hunger. I discovered that it wouldn’t kill me. I also found that I was eating to try and fill a void that no amount of food could ever sate.

It’s true that I was eating because I was physically hungry. But I was also eating because I was emotionally hungry. It felt like sarcoidosis took away nearly every aspect of my life. For months, when the neurosarcoidosis was at its worst, I became an invalid, unable to get out of bed. I could not work, or be the kind of parent and wife I wanted to be. The disease also stripped me of the casual physical pleasures that had once sustained me. Stuck in bed, I could no longer go for an evening walk or a brisk hike. The gym felt so inaccessible it might as well have been in Kathmandu. I also hungered for social interactions. Being so trapped at home meant that having lunch with a friend was a rarity—and, with my diminished energy levels, the day’s only accomplishment. Food was the last thing left I could indulge in, the only tool left to fill the ravening hunger for life within me.

Not much in my life has changed. Sarcoidosis still leaves me craving the pleasures of the life I once lived. I’m still on prednisone. Yet stuffing my face with cereal won’t make it better. Succumbing to the gnawing of my body and mind won’t help.

Sometimes you just have to live with hunger.

Have you ever struggled with a physical or emotional hunger?

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Wasps

June 13, 2014 at 5:15 pm (Uncategorized) (, , , , , )

Yesterday I felt as though I had wasps in my brain. I had at least dozen tasks on my mental to-do list, buzzing around and crashing into each other, each one a goal for my day—and my life. Work on book. Celebrate Andrew’s first day of summer vacation. Write a blog post. Write in journal. Rehab my healing broken ankles. Clean out Andrew’s room. Make Andrew clean out Andrew’s room. Wait, that doesn’t fit with celebrating his first day of summer vacation. Fold laundry. Plan dinner.

I forced myself to choose a single task. In reality, right now I have only the health and energy to accomplish one or two things each day. I decided I’d work on my book and let Andrew gorge himself on video games—his choice for how he wanted to launch his summer vacation. I sat, and the wasps revved their engines. The mounds of clutter in Andrew’s room thrummed at me, as did the undone stretches and exercises for my feet. I also had calls to make, friends I hadn’t talked to in weeks. It took all the self-will I could muster to sit in the damn chair and write a couple of hundred words (mediocre ones at that). I literally trembled from wanting to get up and throw myself at another task—and then another.

This wasn’t solely my writer’s procrastination, though I’d wager some of that was going on too. (Jay used to tease me that the house was never cleaner than when I was on deadline for a magazine piece.) No, the wasps were especially busy because I was trying to live a week’s worth of life in a day. Yesterday I was beginning to creep back to “normal” life after my monthly round of three days of infusions, two of which are chemotherapy medications. These treatments beat the hell out of me. I’m sick and tired after them. All I can do for about a week is hole up in bed, sleeping 16 hours a day. And then I emerge, a little more each day, back to my “good” days when I can bite off one or two tasks.

But it’s hard to creep back into life when there is so much living missed in a week. Here’s where the wasps come into play. They urge to me take on at once everything I had to put down for my week’s absence. They assure me that if I buzz loudly as I flit from task to task that somehow I can reconfigure the inalterable algebra of time, that by sheer willpower I can compress four weeks of book writing, parenting, laundry, and everything else into three weeks of consciousness.

One of the pitfalls of living in Chronic Town—of being afflicted with a serious, chronic illness—is to assume that everything hard or bitter in life stems from the illness. And it’s true that sarcoidosis has brought me its share of unique difficulties. But I don’t think the wasps fly and sting only in Chronic Town. My guess is that my overwhelmed sense of having too much to accomplish in too little time is universal, especially for those of us entering the middle years of our live, when we become increasingly acutely aware that possibilities, like time, aren’t limitless. Anxiety becomes a steadfast companion. With every item we check off our to-do list, four more rear up, undone. We want to do it all. We so desperately want to give our children, our husbands, our homes, our careers, the care and attention they deserve, and yet we cannot.

I think all we can do is to try our best, as trite as that sounds. There’s nothing to be done but to have faith in the choice we’ve made for where to fix our limited attention for this minute and devote ourselves to living it out. It’s impossibly hard, but it’s all we can do. That and tell the wasps to be quiet.

What do you do when the wasps start buzzing?

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