Rubber Bands

October 3, 2015 at 5:10 pm (Uncategorized) (, , , , )

I am finally coming back to life. It’s been not quite six weeks since my 33-day stint in the hospital, but it’s really only in the last few days that I feel myself picking up the fight again—the fight against the disease determining who I am, the fight against the god-awful tiredness and pain I feel every day, the fight against the part of myself that just wants to crawl into bed and never get up.

I used to bounce back more quickly after heath catastrophes. Or, at least it feels that way. Back in 2013 I was in the hospital for a grand total of 40 something days. They were 40 something terrible days of pain, vertigo, periods of blindness, and fear. But I picked myself up and shook the dirt off within a few days of getting home.

This last hospitalization was different. It’s not that I felt more pain or worse symptoms. But by the end I felt totally broken down. I could not stop crying when I got home. I cried if someone said something nice to me. I cried when my pain escalated. I cried when I thought of how much hurt my hospitalization had caused Andrew. I cried when I saw how exhausted Jay looked. Typically I’m not a weeper. But night after night I curled up on Jay and bawled my eyes out until his chest was sodden and I could not get enough air between my sobs.

It wasn’t just the crying that concerned me. After being flat on my back for 33 days, I lost a lot of physical strength and resiliency. I needed to sleep for 16, 17, or 18 hours a day. I woke to shuffle around the house a little, and then fell back into dreamless sleep that did not sate my fatigue. I’m ashamed to admit that I liked being in bed. I really didn’t want to get up. I was so out of shape that doing a simple task around the house like unloading the dishwasher wore me out. Plus getting out of bed and trying to do fold a load of laundry caused the pain in my head to escalate. It felt better and safer to curl up in bed listening to Scandinavian mysteries on my ipod.

The hardest part of getting up was running into Jay and Andrew and feeling horribly guilty at the impact my hospitalization had on them. Intellectually I knew that it wasn’t my fault any of this had happened. But emotionally I was raw with guilt. After absenting oneself from a family for a month, it takes patience and effort to muscle your way back into place. It took a few days after my return for Andrew to make eye contact with me. And Jay had to stay in constant motion to do everything around the house after working a full day. He looked brutalized by exhaustion. It was easier some days just to stay in bed instead of facing the damage I had caused.

What I’m describing is emotional and physical brittleness. It’s an aspect of chronic illness that’s hard for “outsiders”—all you healthy folks— to understand. I am fundamentally a different person than I was before I was diagnosed with sarcoidosis nearly 12 years ago. Each year of health crises, medical procedures, news of the disease traveling to a new organ, threats that I might die, rounds of chemotherapy, all wear me down a little more. Picture a new rubber band. Now imagine snapping that rubber band over and over. For a while the band will keep its shape—its innate resiliency. But eventually, the rubber band will start to stretch and sag. Keep up all that snapping and you run the risk the band will fray and break. I am that rubber band.

It’s easy to berate myself for being weak. If I was made of stronger stuff, each snap to my emotional and physical self wouldn’t break me down. There’s a lovely man who posts regularly to the Facebook support group for neurosarcoidosis I belong to. He looks to be in poor health. He posted photos of himself in the hospital, some from physical therapy where he was hooked up to oxygen on a treadmill. No matter how dire the image, he writes a version of the same thing: “You got this. Keep fighting.” It’s that kind of spirit I fear I’ve lost.

But I’ve begun to wonder if perhaps all this isn’t so starkly binary, strength or weakness, health or sickness. Living with a chronic illness means you are pitched out of a world of blacks and whites and into a vast land of grey. Maybe I didn’t feel strong during the two months since I got out of the hospital and maybe I opted out of some challenges on a daily basis. But when I look at what I’ve been doing more often than not, I feel some hope for myself. Even though it’s been incredibly hard–and at times feels impossible–I’ve been rebuilding. I’ve started going for walks to regain some of my lost physical strength and stamina. I had a heart-to-heart conversation with Andrew about my hospitalization and listened without crying while he told me how hard the month was when I was gone. I’ve begun to go back to work, picking up my never-ending book project. I’ve started cooking dinner again—not every night, but when I can—and showing up for Andrew’s soccer games. Maybe I too “got this.” So all you folks in Chronic Town—and all those in the “normal,” healthy world—keep fighting.

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The Land of In Between

November 18, 2014 at 10:24 pm (Uncategorized) (, , , , , , )

I got a haircut a few days ago. This means I am maintaining my super short, post-chemo look. Andrew calls it a “miniature pixie cut.” Most people who see me—and get over not recognizing me without the long, red hair that defined me for most of my life—tell me that they like my new style. I like it too. I think short hair is flattering on me. Plus, it’s certainly much easier to get ready in the morning now. I literally wash and go.
Truthfully, though, I’m keeping my miniature pixie cut for a different reason. I can’t stand the prospect of growing out my hair. I’m daunted by the prospect of months of “in between” hair that is unmanageable.

There’s a lot in my life that feels as though it is caught in the land of in between. Take my health. I’m certainly much better than I was a year ago, when I was hospitalized for over a month. I was in constant, crushing pain. My vision was blipping in and out, and I could not walk across the room to the bathroom because my vertigo was so bad. I’ve come a long way from those hopeless days. Thanks in large part to my new drug regimen of Acthar (generously provided to me by the folks at NORD, the National Organization for Rare Diseases), I’ve stayed out of the hospital and have mostly been able to live a limited normal life.

This is great news, I know. But it’s not always easy. There’s a lot of pain and uncertainty in the “mostly” and “limited” qualifiers I used to describe my healthier reality. I’m still not able to work with any kind of regularity. The sporadic postings on my blog are a testament to the problems I continue to have with chronic pain, exhaustion, and neurological problems. The past few weeks have been particularly hard. For no reason that I can discern, my systemic sarcoidosis flared up once again, and I was stuck in bed at home for days on end, unable to read and in so much pain that turning over in bed felt impossible.

There aren’t many role models for living through these in between phases of life and illness. I’ll use one presentation of illness as an example. On the TV drama Parenthood, Kristina gets cancer. As in most other pop culture representations of serious illness, Kristina’s travails follow a familiar arc. She is diagnosed with breast cancer, goes through chemotherapy, and loses her hair. For a few episodes, she is literally fighting for her life. But she pulls through. Between seasons, the show moves forward a year in time—at which point, Kristina’s hair has magically gone through the messy, unsightly process of growing from totally bald into a lovely bob. We don’t see her wondering whether to wear a hat when her hair has grown into a crew cut, or what to do with her miniature pixie cut.

The lack of nuance in the show’s representation of Kristina’s illness transcends hair styles. By the time the narrative picks up a year after she is declared cancer free, Kristina is totally back to normal. In fact, she seems healthier than before her cancer. Not only does she have the energy to continue as a full-time stay at home Mom, she decides to run for mayor. She suffers none of the physical after-effects of her illness. She’s not tired from her months of chemo. When she’s delivering her moving campaign speeches, she doesn’t struggle with aphasia or chemo brain. As in so many other depictions of illness, she is either sick or she is well. There is no in between.

Watching something like Parenthood’s dramatization of cancer can be particularly demoralizing for those of us with a chronic illness. We frequently dwell in the shadowy land of in between, caught between illness and health, or see-sawing between periods of wellness and sickness. It’s the chronicity of chronic illness that I find most challenging. When I emerge from weeks of a flare-up, I want to be purely well. I certainly don’t want to have to go in for yet another monthly chemotherapy infusion, or deal with feeling somewhat better. Hell, I want to run for mayor—or, at least have the energy to cook dinner a few nights a week and write every day.

Chronicity is hard, and it’s not the stuff of gripping narrative. “Yesterday I felt mediocre. Today I feel maybe a little more mediocre. And tomorrow I expect to feel more or less mediocre.” It doesn’t make for great television. But life is not television. I have no choice but to live with chronicity, to keep plodding along in the land of in between.

I am going to keep my hair super short for the foreseeable future. That means I’ll have one less aspect of my life up in the air and in a state of flux. Miniature pixie cut, it is.

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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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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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