Up (Or Should That Be Down?) Date

May 30, 2008 at 2:33 pm (Uncategorized)

Pardon my absence from the blogosphere. I’ve been sick. I’ve been tired. I’ve been sick and tired. The novelty of this has worn off for me—and sometimes, I worry, for you, as well. I want to post a happy entry. I want to bring you news of positive changes. But, it is still just me, sick and tired.

There is, however, some medical news. After months of griping about my sweat attacks, mood swings, and other issues that I will delicately categorize as “related to my reproductive functioning,” my doctor rechecked various hormone levels and found that I had virtually no estrogen in my body and that my pituitary gland had stopped producing the hormone. At 36, I am officially in menopause. As if it wasn’t news enough that I have less estrogen than an eighty-year old woman who has gone off hormone replacement therapy, my doctors have begun to fret that the source of the estrogen problem isn’t simply my long-term use of prednisone, but rather that the sarcoidosis has begun to nibble away at my pituitary gland. Why not? It is, after all, the pituitary is just a quick hop, skip, and jump from my cranial nerves, where the disease is already well-established. And one thing my case of sarcoidosis has made clear to me is that it has boots made for walking and it likes to use them.

I sleep about thirteen hours a day and awake still exhausted. After having another sleep study a couple of weeks ago, I learned that not only do I have severe sleep apnea (which I personally attribute to becoming fat and developing loathsome rings of flesh—which I affectionately refer to as “my wretched goiter”—around my neck), but I also have episodes of non-apnea related hypoxia. OK, let me try that in English. Sleep apnea occurs when the soft tissues of your airway collapse as you sleep; this means you don’t get enough air (and thus oxygen). The result is crummy sleep, along with extra strain on your heart, which has to pump harder for those interludes of less oxygen that take place before your brain rouses you from sleep to resume breathing. To treat sleep apnea, you need to use a machine that gently (or not so gently, in my case) blows air down that collapsible airway to make sure it stays open. I already knew I had sleep apnea; in fact, I own one of the machines. However, I was instructed by my doctors to discontinue using it because they felt it was contributing to ongoing sinus infections, to which I am doubly susceptible because I am so immune compromised.

But this latest sleep study revealed that I also have long periods in which my airway stays open (i.e. non-apnea) but my oxygen levels still drop below 70 percent. I believe the clinical term for this is “not a good thing.” Oxygen saturation levels below 90 percent are considered dangerous. So now I am using nighttime oxygen, while awaiting an additional sleep study, in which they will outfit me with the latest and best sleep apnea machine and accompanying mask and oxygen to see how I do. I had hoped the oxygen at night would help me feel less tired. It doesn’t. But I do have my very own compressor next to my bed and twenty-five feet of neon green tubing. As much as I love my compressor and its constant thrumming, I’d like to know why I’m experiencing oxygen desaturation—not only at night, but also during periods of mild exertion. As with my pituitary dysfunction, my doctors speculate that my sarcoidosis is busy in my lung tissue and that this is the cause of my non-apnea breathing woes.

Shall I go on? Well, it’s my blog, so I will.  I continue to limp because of the (theoretically) sarcoidosis-related bone issues in my foot. A trip to the foot-specializing orthopedist revealed that the sarcoidosis lesion is no longer present (or at least visible) on the bone in my foot. Which might sound like good news, but the entire area still remains swollen and sore. I suppose I should be grateful that walking around the house uses up all my oxygen, because that’s about all the exercise I can do without causing my foot to balloon and throb.  Even though the contrast between my highly mobile disease and my own now pretty fixed in place existence can be a little hard to take. I used to be a world traveler, but the illness’ impact on my brain means that driving across town gives me vertigo.

Sometimes I envision my sarcoidosis as a restless little Napoleon, always on the lookout for new organs to conquer. Once it has toyed with my liver or my heart, it grows bored. I can almost feel it impatiently tapping its fingers on the table, as it eyes the Gray’s Anatomy map of my body and plots its next campaign, maneuvering between the batteries of Remicade and Imuran and prednisone I try to lay in its path. It has kept its military bases in my liver and on cranial nerve number eight (the source of my vertigo and perpetual headache), but otherwise sends its troops where it will. Where’s a frigid Russian winter or a Lord Wellington when I need one? Switching centuries (if not metaphors, entirely), I feel like one of those 1930s Ethiopians shaking my spear at the Italian bombers flying above me.

So, there’s my update. Sarcoidosis here, sarcoidosis there, sarcoidosis everywhere.

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Play That Funky Music, White Girl

May 14, 2008 at 12:47 pm (Uncategorized)

I’ve been in a funk. And I’ve been feeling like crap. Neither of these are medical terms, I know, but they help explain why writing—or moving, or making the bed, or talking on the telephone—all feel like monumental efforts more in keeping with summiting a mid-sized Himalayan mountain than accomplishing the very minimal tasks of daily living.

It used to be (back in my pre-sarcoidosis days) that when I fell into a funk, I could use activity to jar myself out of my mood. A brisk walk or hike or a bike ride on a dirt road rutted enough to knock loose the funk was all it took to remind me that I had much to be happy about and little to fret over. Even when I was nine months pregnant with Andrew and the cumulus clouds that precede depression moved in, I would climb aboard a stationary, recumbent bike at the gym. Twenty minutes later, I felt re-charged, calmer, and paradoxically, more energized.

My other funk-busting strategy in the halcyon days before I moved into chronic town was to find people. I am, by nature, a loner. I like quiet, seek the corners (preferably behind plants) at large parties, and can endure a limited amount of social interaction in one day before feeling overwhelmed. Still, I love meeting with a good friend and gossiping over a cup of coffee. Lunch dates with people working out in the world (instead of typing away in a home office like me) took me out of my funkified head and left me revitalized.

Ever since I’ve had sarcoidosis, I’ve tried variations on these two strategies and have come up short—and still in a funk. I’m learning that what feels like depression is really the all-consuming fatigue that characterizes my disease. Nevertheless, when my mood turns sour, I still try to pedal (albeit for much shorter distances) on my stationary bike. However, instead of feeling rejuvenated at the end of the workout, I feel bludgeoned. Every day, I look at the bike in my room, and a little voice whispers inside my head, “You’d feel better if you rode that.” I argue with the voice. “Every bone and muscle in my body hurts; my head is pounding; I’m dizzy; I’m tired; I’m so short of breath.” Lately fatigue and more severe manifestations of the disease (along with what my husband Jay calls common sense) have won out and I haven’t forced myself through a workout. But I’m left with the funk, along with a feeling of failure for not having pedaled my way to a brighter frame of mind.

Meeting with friends is equally complicated. Talking on the phone too often leaves me with a screaming headache. (Interestingly, phone conversations—as opposed to face-to-face ones—leave the left side of my face totally numb.) I’m on so many different varieties of immunosuppressants that venturing outside the house to meet with friends feels like I’m contemplating cliff diving instead of meeting a buddy for a cup of joe.

This sick and tired dog needs to learn new tricks. I remind myself of our beloved dog Calypso, who, after having surgery, had to wear one of those plastic Elizabethan-looking collars to prevent her from licking her wound. Once home from the vet’s office, she had a terrible time navigating the house. She would misgauge the size of a doorway and walk into a wall. Bonk. Rather than back up and re-position herself, she would simply take two steps back and walk into the wall in exactly the same place. Bonk. This probably would have gone on for hours if Jay or I hadn’t intervened and guided her through the doorway.

I need someone to guide me through my own doorway of disease and depression. The old ways don’t work. They simply exhaust me more than they help me. If I could stop walking into the same wall, perhaps I could figure out new ways to cope with the funk. Bonk.

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May 1, 2008 at 4:20 pm (Uncategorized)

This evening, my niece (and goddaughter), is getting confirmed in the Catholic church. My mother is there with her, as is my sister. I am not.

When my niece was an infant, I worked for a few months as her nanny. My brother and his wife egregiously overpaid me to play with their child. I loved almost every moment I spent with my niece. It was through the acts of caring for her—changing her soiled diapers, tickling her tummy on the changing table, re-reading the same picture book fifteen times in a day, spooning sweet potato mush into her mouth only to have her spray it back on me with peals of laughter, pushing her stroller through the hot, deserted suburban streets, ripping off her socks for yet another round of “This Little Piggy”—that I realized I someday wanted to have a child and that when I did, I could manage the practical aspects. Now, she is a teenager, and, after tonight, she will be an adult in the eyes of the church.

I want to be there with her tonight. Even as late as last week, I toyed with the idea of flying or driving so that I could sit in a pew with my family and watch my niece be confirmed. But I can’t. A drive to Missoula and back (for a total drive time of under four hours) two days ago to see a specialist about my bone sarcoidosis made it clear that I couldn’t. I’m still recovering from the Missoula trip. Something about the minute movements of my neck in the motion of the car set off testy old cranial nerve number eight, and I’m still nauseous, dizzy, and half-blinded with headache.

I reason with myself that not being there isn’t such a big deal. “It’s not like I could do anything if I was there, right?” I ask myself. This is true. I wouldn’t do much if I attended her confirmation—just like I wouldn’t have done much at my husband’s brother’s wedding, or at my husband’s father’s marriage, or at the opening of my mother’s museum art show, all of which I missed because of my illness. We come to these public events not to do something, but to bear witness to the turning points in the lives of those we love. If I could be there, I could convey to my niece that she matters to me in ways that transcend any message I’ll write on the belated card I’ll send her. I’m adept with words, but they fall so short of human presence, of the connection of the flesh. I feel robbed by my disease to be present to confirm my love of her, to confirm my role as her godmother, to confirm myself as a part of her life, to confirm a bond that began with sweet potatoes and will last, I hope, a lifetime.

In the ceremony tonight, she’ll confirm her membership in the church her parents chose for her at birth. At baptism, she was a passive recipient; her parents and her godparents made vows standing over her. Tonight, she’ll use her own voice to make her own commitments. I’ll send the aforementioned card; I’ll call her later to congratulate her. I won’t have any words of wisdom for her. What I will say is, “I wish I had been there.” And there is a sort of confirmation in that.

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