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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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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