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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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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