Here We Go Again

September 5, 2015 at 12:44 pm (Uncategorized) (, , )

Brace yourself. I’m about to do what I’ve done for so many of my past blog entries—apologize for being gone so long from this written world, explain whatever misfortune has recently befallen me because of the rotten chronic illness I’ve got, and vow to do better as a blogger.

So here we go. Again. I am sorry for being absent from this blog. But unfortunately I’ve been having quite a time of it. Starting in July, my sarcoidosis began to flare. The pain in my head quadrupled. I wasn’t able to get out of bed. To make things worse, a combination of the neurosarcoidosis in a particularly non-sexy manifestation called diabetes insipidus along with the side effects of a medication to control this weird symptom of weird disease caused my blood sodium levels to drop to dangerous lows. Who knew that sodium is necessary for proper cardiac and neurologic function? I sure didn’t, but I learned quickly, when my heart began racing so wildly that my defibrillator kicked in and paced my heart for nearly 48 hours straight.

I couldn’t cope at home. So I wound up in the hospital, for 33 long days and nights. They took very good care of me. My doctor and his team of nurses are truly extraordinary, both in their skills and their kindness. But, still, it was the hospital. I was hooked up to a pain medicine pump. I was poked and prodded, given intravenous steroids that made my moods erratic and mysterious. Even the intravenous drip from the pump couldn’t contain the exploding pain in my head. I’m sick of calling this particular affliction a headache. It so minimizes the catastrophe in my head—and the catastrophe it wreaks on my family’s life. (I just might have a contest to see who can come up with a better, more severe sounding word than headache for something that lands me in the hospital for over a month.) There were bright spots, of course. My sister came out for a week to help Jay and Andrew and me make it through this ordeal. So did my parents. Overall, the month was bleak. But I improved enough to make it home, and now I’m slowly regaining a little bit of all the strength and stamina I lost by laying flat on my back for 33 days. It’s millimeters, not miles, a day.

The problem with landing in the hospital for a month or two every year or two (or a couple of times a year, depending on the disease’s fickleness), is that it becomes routine for everybody else. Except me. At least 75 percent of the nurses remembered me. This was nice, but it made the whole process feel disarmingly familiar. Jay and Andrew immediately went into crisis mode. Jay figured out a way to sleep at home with Andrew and make it to the hospital by 5:30 AM for the doctor’s morning rounds. It involved sleep deprivation. Jay and Andrew exhausted our town’s to-go options and we ate dinner as a family in my room most nights. Jay texted all my close friends updates about my condition and I got lovely responses, which all included some version of, “It really sucks you are back there.” But my terrifying pain, my loneliness, my anxiety that I would never get out, never be able to get away from the rank beast of pain crouched in the corner of my brain, felt all new to me.

Coming home was hard. For a week, I literally could not stop crying when I spoke to people. Their kindness, especially, did me in. I had the shakes for a good while too, and I seemed to have picked up a nervous tremor that I cannot yet ditch. I had to face Jay’s exhaustion and Andrew’s pain at losing his mother for a month with no warning and no guarantee that it won’t happen again.

So while in one sense, I could plug this blog post into my familiar template, and I joke about “here we go again,” in another sense, this is all terribly wrong. This trauma was unique. It may fit the narrative flow to classify it as “another one of Rebecca’s long hospitalizations.” But for me, it was a month of pain, my month of pain, which was like nothing that came before it.

I’m tempted nonetheless to follow my old format and promise you that I’ll be back here, writing X days a week. But I won’t. I can’t. I am creeping back to a life not spent entirely in bed. I only cry occasionally now. But Jay, Andrew, and I are not back to normal. We are carving out a new place for ourselves in Chronic Town. I’ll write again when I can, and I’d love to hear from you. Keep me in your thoughts, please, as I try to figure out what recovery looks like.

So, what would be a better word for headache? Can you think of any word or phrase that does a better job encapsulating the severity and duration of mine?

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Catch-22

May 1, 2015 at 5:06 pm (Uncategorized) (, , , , , , )

I’m sorry for not writing here for so long. It’s been a rough few months. Nothing cataclysmic happened—no time in the hospital or emergency trips to specialists—but it hasn’t been easy since I wrote those happy posts about starting Acthar and how much better I was feeling.

The Acthar has caught me in a Catch-22 bind. Wikipedia defines Catch-22 as “a paradoxical situation from which an individual cannot escape because of contradictory rules.” The paradox I’m confronting is this: at a high dose, Acthar does seem to control the worst of my neurosarcoidosis and keep me out of the hospital – it just causes severe depression in the process.

I’ve bumped into depression at varying degrees throughout my life. In the past, I’ve negotiated bad patches with patience, medication, and therapy, and arrived more or less unscathed on the other side of inner darkness. It feels different this time. Medication doesn’t seem to be helping drag me out of the bleakest areas of my internal landscape. I go to therapy and try to cultivate patience, but still, the depression sticks to me like humidity.

To try to address the depression, my doctors had me cut back on my Acthar dose, but within weeks subcutaneous sarcoidosis—little nodules that erupt beneath my skin that usually are harbingers of the disease’s resurgence—dotted my arms like shotgun pellets. Then along came more disruptive and dangerous symptoms. The headaches and vertigo caused by the sarcoidosis in my brain and cranial nerves came roaring back. I was stuck in bed for a couple of weeks. We promptly bumped my Acthar back up to its original dose. I feel this Catch-22 pressing like a barbed wire boundary no matter which way I turn. With less Acthar I am trapped in pain in bed, lonely and depressed. With more Acthar, I carry my loneliness and depression with me and don’t really want to get out of bed even if I’m feeling physically well enough to try.

Trying to put words to depression—to explain it or describe it—is like trying to catch fog. It emanates from dysfunctional neurotransmitters in the brain, and yet I feel its effects in my gut, my bones, and my soul. It’s a heaviness that pins me down the minute I awake. Writing, calling a friend, talking to Jay, smiling for Andrew, turning over in bed feel not just like too much work, but utterly impossible. It robs me of my life just as much as sarcoidosis. It leaches the color and the sound from life. I see Jay and Andrew moving through the house. They are talking, laughing, and mock arguing over the pronunciation of a word. But it’s like watching someone watch a silent, sepia-tinted movie on television. I can’t reach them. I can’t join them.

I think what’s making it especially hard to try and emerge from depression this time is that not only am I injecting myself twice weekly with the higher doses of Acthar, but I’m also attempting to manage being sick and depressed at the same time. This probably sounds logical to everyone outside my own heavy brain, but it finally dawned on me the other day how much chronic illness and depression feed on and reinforce each other. A sick day and a depressed day look and feel very much alike. They are empty days, spent in bed, with the blinds drawn. There is something wrong with my head, and it’s making the rest of me unable to join life. If I could stick to a schedule, I think it might help me fight the depression. Positive routines in the past have helped me blast myself out of the cocoon of inner darkness. But it’s nearly impossible to formulate and stick to a routine when I’m also trying to manage a chronic illness whose main characteristics are chronic pain and chronic fatigue – you never know how you might feel when you wake up in the morning, but the odds seem to be not good.

Wikipedia doesn’t tell you how to emerge from a Catch-22 trap. I’m certainly not stopping my Acthar. I’m not going to let the disease lay waste to my body. But I also can’t let the depression conquer my soul. What do I do? I think there’s something to my old standby of patience, medication, and therapy. Maybe my body will adjust to the Acthar, or maybe the anti-depressants will kick in more fully. Maybe I’ll find a way (and enough health) to hammer out and stick to a basic schedule that gets me out of the house and interacting with the world every day. Maybe if I stick to my new goal of trying desperately to put into words my fight against depression, I’ll find a way through the fog, back to the brilliant, colorful world I can sense is right in front of me

I know that’s a lot of maybes. But it’s what I’ve got.

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Caveats

February 6, 2015 at 4:08 pm (Uncategorized) (, , , , , )

Pardon my long absence. I’ve had an eventful—and at times grueling—few months. But I’m finding my way back to writing, and hope to post more regularly here.

If there’s a theme to my news it’s this: I’ve gotten a lot of good news, but good news with caveats.

I’ll talk about my other news (like a more involved knee surgery than I thought I’d signed up for and medication side effects) in future posts, but let’s start today with my sarcoidosis. In December, I went to Ohio to meet with my sarcoidosis guru to assess the impact Acthar is having on my systemic disease. Acthar is the new treatment I was able to start on last May after the National Organization for Rare Diseases (NORD) was generous enough to enroll me in their patient assistance program after my insurance company denied coverage for this very old but newly very expensive drug. I was desperate when I began the twice weekly home injections of Acthar, stuck as I then was on an unsustainable regimen of toxic drugs that seemed barely to control my sarcoidosis—two monthly chemotherapy infusions (Cytoxan and Rituxan), one chemotherapy pill (CellCept), and prednisone. And during the past seven years, I had “failed” an even longer list of equally toxic drugs that did even less to stop the disease’s victory march through my body than the ones I was on. Acthar felt like my last hope.

I went to Ohio bearing films of whole body PET scans done before I started Acthar and six months after the drug had a chance to begin working. The comparison, according to my guru, was “astounding.” Acthar diminished the active sarcoidosis in my body by 50 percent. I need to repeat that because the news still takes my breath away. In six months, Acthar did what a host of immunosuppressants, chemotherapies, TNF inhibitors, biologics, and corticosteroids could not. It not only stopped the sarcoidosis from progressing, but beat it back. This is great news in itself, but it also means I can stop both Cytoxan and Rituxan. I can look forward to fewer nasty chemo side effects, and hopefully more energy as I quit these toxic brews.

There is, however, a caveat. As much as Acthar is demonstrably working to fight my sarcoidosis, I am not feeling much better. I continue to struggle with almost daily migraine-level headaches, along with frequent bouts of vertigo that are so intense I can’t get out of bed. I’m still exhausted every day, even after sometimes sleeping fourteen hours a night. The left side of my face is still numb, and my left leg is so numb that after my recent knee surgery, I gave myself second degree ice burns without feeling a thing.

“What is going on?” I asked the sarcoidosis guru. “Why don’t the encouraging test results mean that I feel better?” It turns out that the disease has damaged—probably permanently—the delicate cranial nerves that are responsible for my pain, vertigo, and vision problems. My chronic fatigue and various areas of numbness are also caused by nerve damage. There is no current treatment for peripheral neuropathy.

If I plotted my emotions during my hour visit with the guru and in the weeks since then the result would look a lot like a sine curve. My hopes rise, dip, rise, and dip again, and I end up pretty much back where I began. My inner dialogue goes something like this:

“I’m so much better! Acthar is actually working”
“But my head is throbbing and my world is literally tilting.”
“I get to stop Cytoxan and Rituxan! That will help me feel better, maybe a little less tired.”
“Who cares? I have permanent nerve damage and there’s no hope for improvement.”
“But I’m so much better. Acthar is actually working.”
(Repeat. Ad infinitum.)

It’s exhausting to be on a rollercoaster of emotions. In turns, I am elated, deflated, hopeful, and gloomy. I push myself to appreciate the truly good news I received. I catch myself wallowing in the caveat. When I inject myself twice a week with Acthar, half of the time the syringe feels like it contains a golden elixir of hope itself. “This will cure me,” I think. But the next time I’ve got to plunge a needle into the muscles of my thigh, it only hurts and makes my hands shake. What does it even mean to be cured if the damage the disease wrought means I’ll always keep feeling so lousy?

I’d like to report that I’ve found a way out of the oscillations of my personal sine curve. But it’s an emotional equation I can’t solve. I keep wrestling with this paradox: I am better, and yet I am not; I am being healed, but in a way it doesn’t seem to matter. It’s possible that sarcoidosis has broken me to the point that eradicating the disease won’t fix me.

Without a solution, what do I do? For now, I am falling back on the single most important lesson I’ve gleaned from my eleven years in Chronic Town: run away from big concepts like cures or permanent damage and reside instead in each moment. I’m trying not to give up on hope, but just scale it back. I’m seeking refuge in daily life— in my son and my husband. I cannot solve a conundrum. But I think I can live within it.

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Thankful

November 30, 2014 at 2:09 pm (Uncategorized) (, , , , , , , , )

In this season of gratitude I have extra reasons to be thankful.

Last week, I received some of the only good news about my systemic sarcoidosis I’ve gotten in the nearly eleven years since my diagnosis. My doctors wanted to see if they could measure the effects of Acthar—the injectable treatment that they used to try and replace Cytoxan about 6 months ago. I got a PET scan before I began Acthar. The results were demoralizing. “You lit up like a Christmas tree,” one of my doctors said, referring to the glowing orbs of inflammation that revealed the extent of the disease’s damage within me—in my lungs, my bones, my heart, my brain, even studding the skin beneath my arms and legs.

Last week, they repeated the PET scan. I waited with damp palms to go over the results with my local doctor. “I’m not going to use the word miraculous,” he said, “but these results are extraordinary.” The Acthar has made “significant” inroads against the sarcoidosis. Even my untrained eye could tell the difference between the two scans. While the first had glowed with the lurid presence of the disease’s globules everywhere, the second was darker, calmer, quieter. It feels like a double blessing. Not only did I get to stop Cytoxan, the most difficult of my monthly chemotherapies with the most side effects, but I was able to make some progress against sarcoidosis. I’m not well yet by any stretch of the imagination, but to be able to type that last sentence—to say I’ve made progress—is unfamiliar and exciting territory.

My double blessing is actually a triple one. If it weren’t for the generosity of a non-profit organization called the National Organization for Rare Diseases (NORD), I wouldn’t even have had the opportunity to test Acthar’s efficacy against my illness. Acthar costs somewhere between $30,000 and $60,000 a month. My health insurance plan refuses to cover the medication (and my positive PET scans won’t somehow force them to start. The plan will only accept the results of a large, peer-reviewed study as “acceptable” data that warrants providing coverage). If it weren’t for NORD, I would never have been able even to try Acthar. I’ve just renewed my application to NORD for next year. Hopefully, they will continue to help me.

I’m not accustomed to receiving good health news. I wasn’t quite sure how to react after reviewing the second PET scan. I’d grown unaccustomed to hope. Feeling it unfurling within me, like a green shoot taking root beneath the snow, leaves me breathless. The future feels a little more well-lit, a little wider. We’ll have to wait and see, of course, for what happens next. But for this moment, I can let just be grateful.

I’ll need to hang onto this awareness of gratitude in the coming weeks, which will be difficult. After this month’s round of chemo, Jay and I are heading to Ohio to meet with the sarcoidosis Guru to go over the results of the PET scans and try to figure out how to proceed and what to expect. I come home and immediately get knee surgery on December 9, to repair a torn ACL. Please keep me in your thoughts and prayers during this season of light and hope.

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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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Facebook and Chronic Town

October 23, 2014 at 8:23 pm (Uncategorized) (, , , )

When you live in Chronic Town, Facebook can be a dangerous site to visit. I’m not talking about Facebook’s experiments on emotions, or its pernicious data tracking. What I mean is that trolling through all your friends’ posts about their busy and beautiful lives can feel gut-wrenching when you live with a chronic or serious illness.

In the past week, I’ve watched as friends and acquaintances on Facebook post photos or updates about long family hikes and century bike rides. There are pictures of gourmet meals prepared for family dinner night, dogs on long walks, and houses all spiffed up for parties. There are announcements about books being published, professional accomplishments, trips being taken, and photos of adorable children engaged in complicated-looking baking or arts and crafts projects.

These are lovely things to hear, and I am truly happy for my friends—and proud of them for the all the activities they are able to undertake and bring their children along on. I am also, dare I say it, more than a teensy bit jealous. Living with a chronic and sometimes debilitating illness means that I’m often not able to do everything I’d like—as a writer, mother, wife, and human being. And it’s painful sometimes to see others being able to live as I would like.

The past few weeks have been particularly difficult, perhaps because I’ve been feeling exhausted, sick, and extra broken for no discernable reason. I’ve been tempted at times to be brutally honest with my Facebook posts, and update everyone on what daily life in Chronic Town consists of some days—barely surviving. Here are some samples:

I made it to the dinner table three nights in a row this week! And I was able to cook a meal once in 14 days. (Attach photo of mediocre-looking meatloaf).

I slept thirteen hours last night, and still had to take a three hour nap. But I was able to drag myself out of bed when Andrew got home from school! (Attach photo of my extraordinary bedhead).

I’m down to getting two chemotherapy treatments a month! It sure is better than getting three, but it still really sucks. (Attach photo of IV bag).

I’m pretty sure my friend Martha will say that I’m comparing my insides to other people’s outsides, that everyone has rotten days (and even spates of them) but not everyone chooses to focus on this when they’re writing little snippets for wide public consumption. And she would be right.

But I think what is unique for those of us in Chronic Town is that we often lose the ability to be able to curate our lives for external consumption. Our daily lives can become so stripped down that we don’t have the option to select rosy, busy scenes for others to see, whilst holding within us and not sharing the sicker, darker moments. I may sound glum, but sometimes all I have are the sicker, darker moments. And at times like these, it can be jarring indeed to scroll through other people’s happy outsides.

I suppose an easy solution would be to give up Facebook. But I’m not going to do that. (In fact, as always, I’ll post a link to this blog entry from my Facebook account.) I like to know what’s going on with friends, family, and acquaintances. I like seeing them thrive. I’m not going to give into the impulses of my inner grinch, that childish piece of myself who feels a sting on bad days when reading about another’s accomplishments. I am, however, going to push myself to be as honest as I can be in my own Facebook posts. Rather than writing nothing on bad days—or only glossing a bad day with a positive spin—I want to try to share where I’m really at with my Facebook friends. For me, it’s a way to connect with a wide array of people from different facets of my life. Why not truly connect with them? Why not bring some of life in Chronic Town to the empire of Facebook?

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Vacation From Chronic Town

October 13, 2014 at 3:14 pm (Uncategorized) (, , , , , )

It’s been a while since I’ve written. I took a vacation from Chronic Town. No, I wasn’t cured of my sarcoidosis, but for a few weeks I was healthy enough and lucky enough to be able to pretend I was.

For 30 glorious days, Jay, Andrew, and I were in France. Simply typing those words gives me a rush. We were in France. France! And in France, I did not fall apart. I did not need to seek emergency medical care. I did not get chemo or walk into a doctor’s office. I did not sign HIPPA releases or have to rate my pain on a scale of 1 to 10. I did not refill prescriptions or wait for lab work. For a month, we were able to be nothing more and nothing less than a family on a vacation. Those of you who also live in Chronic Town—those who live with serious or chronic illness—know how this was nothing short of miraculous.

We rode bikes on Ile d’Arz, an island off the coast of Brittany. We ate ice creams cones perched on the Gothic walls of the Papal Palace in Avignon. We drove on the highest road in Europe, a terrifying one-lane squiggle of a pass through the Alps. In Paris we wandered the Marais on a rainy day and scribbled in our journals over cups of chocolate in an old café. Andrew flew an airplane off the Eiffel Tower.

There is that old adage that travel expands your horizons. France blew mine apart. Living with a chronic illness narrows your physical and emotional borders. When you’re going through three different kinds of chemo and have a neurological disease that literally puts you off balance, you end up spending a lot of time in two places—at home and in the doctor’s office. And when you’re not feeling well, your thoughts get winnowed down too. Being in pain takes a lot of energy. It sometimes feels impossible to think about anything other than how much you hurt or how crappy you feel.

Given how patchy my health has been, we went to France with few expectations. “There’s nothing wrong with a mellow trip,” Jay and I told each other many times. We used to plan our trips around how many 20-mile hikes or mountain climbs we could fit into our itinerary, so we tried to psych each other up for a different kind of travel experience. We anticipated that for many days, I would curl up in our hotel room with a good book while Jay and Andrew went off and “did” things. But quite the opposite happened. I felt surprisingly healthy and resilient most days. I was able to do much more than we had dared to hope.

This isn’t to say that I was hiking for 20 miles (though I did pull off one two- hour walk in the stunning Ubaye Valley in the Alps!). We had several “off” days, where we stayed in our rented rooms and I rested. I had bad days, with the same crushing headaches and vertigo I get at home. And every day—just like every day at home—I was tired.
But I was able to edge outside myself. I was lucky to feel well enough to be transported by France to a place beyond the walls of Chronic Town.

Where France took me wasn’t to some profound space of rebirth. It just shook me out of some confining routines and depressing thought patterns. It reminded me of the joys that getting out into the world with my husband and son bring. It re-grounded me. There were days when my toughest choice was to pick which kind of pastry to have for breakfast. This was refreshing and reinvigorating—and a very good reminder that there is a world beyond treatments and IVs, beyond pain and fatigue.

I resolved to bring France back to my life in Chronic Town. Sure, I was due for three treatments and a spate of doctor’s visits. But I was adamant that I was going to push myself to get out more—out of my house and out of my head. But we arrived home to a medical crisis. I was nearly hospitalized because one of my medications was causing some dire side effects. I avoided the hospital, but it was a hard re-entry.

Keeping my post-trip resolutions remains challenging. It’s tough not to feel trapped in Chronic Town. But I’m trying.

What are your solutions for not feeling trapped inside the hardest parts of your life? What helps you break out of your head and your habits?

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Tired Beyond Words

July 9, 2014 at 4:08 pm (Uncategorized)

I am so tired. I’ve tried sitting down a few times to write a new post, or at least to respond to the insightful comments I received after my last entry. (Thank you for these. It means so much to me to hear from you.) But I am too exhausted to find words. Rather than disappear for weeks on end, I thought I would write and just say this– I am too tired to write. But every day I am hopeful that I’ll regain enough energy to try again

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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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