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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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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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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