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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Miraculous

May 20, 2014 at 9:01 pm (Uncategorized) (, , , , , , , , , , )

It feels like a miracle has happened to me.

When I last wrote, I was stuck between good and bad news. The sarcoidosis guru I see in Ohio recommended a promising new treatment for me. But the plan managers for my prescription drug plan refused to cover the expensive medication called Acthar. Since then, we went through two rounds of appeals with the plan managers, and got a resounding “NO” for our efforts. In fact, the bureaucrats wouldn’t even talk to my doctor. A “licensed pharmacist” made the decision that I should try IV prednisone—as if I haven’t endured numerous rounds of that over the past decade.

We had one round of appeals left. Unfortunately, the plan managers told us that even if we somehow convinced them to approve Acthar, they could opt to classify it in their pricing scheme so that we would have to pay for half the medication – which wouldn’t even count toward our annual out-of-pocket maximum. At somewhere around $30,000 a vial, such a victory over the plan managers would be a pyrrhic one. There is no way we could afford one month of such “coverage.”

I think I stopped taking real breaths after Jay got off the phone with the plan folks and told me the news. For the first time in many years, my doctor had a treatment that he thought might actually help me. After 3 months of Acthar, I could at least (hopefully) get a break from Cytoxan, the chemotherapy infusion I get every month. It felt like just as I heard the first good news in quite a while, faceless and nameless bureaucrats were snatching it away.

Here’s where the miracle comes in. The sarcoidosis guru put me in touch with a non-profit called NORD– National Organization for Rare Diseases (https://www.rarediseases.org/). In addition to providing advocacy and education for those affected with rare diseases, including sarcoidosis, NORD offers patient assistance programs. One such program helps patients obtain so-called “orphan drugs”—medications that treat rare diseases and so are not manufactured in large quantities and are often extremely expensive—like Acthar. I filled out an application, crossed my fingers, and kept holding my breath.

I found out yesterday that NORD approved me for full assistance so that I can obtain a 9-months’ supply of Acthar at no cost. I am overwhelmed with gratitude to NORD and its donors who made this possible. I can’t put into words how grateful and we relieved we are. I finally took a real breath. We can postpone our battle royale with the plan manager. I can try out this new treatment, and maybe get a break from the awful side effects of the Cytoxan. It brings tears to my eyes every time I think about it. All I can say and feel is “thank you, thank you, thank you.”

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