This Arm Is MY Arm

March 17, 2010 at 9:14 pm (Uncategorized)

It’s difficult to feel in control of your life when you’re stuck in Chronic Town.

Sickness is hell on autonomy. The physical limitations imposed by sarcoidosis have made it impossible for me to work. This can make me feel like a second-class spouse. I don’t like feeling financially dependent on my husband. The sarcoidosis has also interfered with what I do. I’ve written before about having to abandon activities like hiking that I loved to do alone and with Jay. I’m eager to teach Andrew how to use the ice skates he got for Christmas. But I’ve been too ill to feel safe on the ice; even when the headaches and vertigo ease, I still can’t to drive us to the ice rink. Even if I could work the pedals in my orthopedic boot, I don’t know when I might have one of my blindness episodes. I worry that even if I lined up a ride to the rink and laced up my skates, I would immediately tear some band of connective tissue or break a bone. I’ve been ripping ligaments and cracking feet bones with disturbing regularity.

Treatment can take away just as much self-determination as the sickness. Even though all the surgeries and tests I’ve subjected myself to have been in the interest of getting better, they are invasive. For not insignificant amounts of time, I have literally lost control of my own body. Sometimes this lack of control is as simple as not moving for an hour during a cardiac MRI. Or not going to the bathroom when I want so that I can fill my bladder to the bursting point for the best possible imaging. Sometimes I give my body over to gastroenterologists to be sedated and then have my intestines explored with cameras. One time, I consented to have a right-heart catheterization, so that the doctors could assess the extent of my cardiac sarcoidosis. The idea was to see if, while I was sedated but not fully asleep, the doctors could make my heart go into one of its flutter states. They were trying to see if I was susceptible to ventricular arrhythmias—which can be deadly. If I were, they would have implanted a defibrillator. Fortunately, I wasn’t. At least not that day.

This medically-sanctioned and -induced loss of control extends into almost every aspect of my treatment. Showing up for all my doctors’ appointments and infusions is so time-consuming it’s almost like a job. The infusions and some of the pills I take have serious side-effects that also erode my control over how much I sleep, how I feel, and how many days I have left to spend as I will while I recover from my treatments. The chemo I got today, of course, has the biggest impact on me. After almost two years of having it build up in my system, I need at least four days to regain some authority over myself—even simply over how much I sleep and throw up. And when I need to be hospitalized, I quite consciously check my sense of dignity, boundaries, and self-determination at the door. In the hospital, I become a cog in the massive medical machine. I’m weighed at 4 AM; a nurse checks my vital signs at 6 AM. I am dependent on the hospital staff to provide pain relief, medication, and nutrition. I am not even allowed to walk unsupervised the three feet from the hospital bed to the toilet. It is the ultimate in care; it is also the ultimate infantilization.

Ever since I began getting treated for sarcoidosis, I’ve been grappling with these abdications. Other people decide to opt out of mainstream medicine’s conveyor belt approach to healing. But I authorize the tests, the drugs, the hospital stays. I recognize that I’m making a deliberate choice. But it hasn’t been an easy set of decisions. Since I embarked down this path, I’ve danced and sometimes stumbled over the line that divides consciously offering my body for testing from simply becoming a lab rat. I don’t want to forget that I’m the one in charge. When a particular test or treatment suggestion feels ludicrous, I can step away from the “good girl” inside me who wants to obey the doctors. Just because someone has the initials M.D. affixed to the end of her name, does not make her every utterance true. I have the right to fire a doctor, nix a test, and refuse a new drug.

Although it’s a clichéd formulation that the flip side of rights is responsibilities, it’s also true and nicely succinct. When I cede so much authority to doctors, it’s easy to release my other responsibilities to my body. My disease and treatment have overtaken many aspects of my life and my body. Sometimes it feels like I have to look hard to find a way to assert my ownership, and sometimes it’s easier to think, “They’re handling it. There’s nothing I can do.”

I think I have succumbed to this temptation lately. The ongoing chemo along with the neurosarcoidosis flare-up is exhausting. They’ve beaten down not only my body, but also my will. I realized this acutely when I reflected on the hopelessness I felt as soon as I investigated my latest disease manifestation, subcutaneous sarcoidosis. I couldn’t sleep the other night, after brooding about what I thought were hidden threats in articles about subcutaneous sarcoidosis. Tossing and turning in bed, I realized how profoundly I need to do something to fight this disease.

I’m going to schedule a long over-due appointment with the sarcoidosis specialist I see in Ohio. I want him to review all the neurological symptoms that reared up last month; I want him to add subcutaneous sarcoidosis and finding a new sarcoidosis bone lesion on my hip to my list of symptoms. And I want him to communicate with me about this all. Instead of allowing him to rule my life through cryptic three-line e-mails that tell me what drug at what dose to take now, I want to talk with him about what the new forms of the disease indicate for my prognosis, and how to account for both my improvement and the presence of these new symptoms since I started on the newest medications he prescribed. Before I make the pilgrimage to his office, though, I intend to conduct some research of my own. I’ve gotten afraid of reading about failed clinical trials, the calamitous side effects of medications, and people dying from this stupid disease. Instead of “browsing” and skipping from grim-looking article to grimmer-looking article, I want to spend some time carefully selecting sources I trust and learning about my new medications.

I think these actions will help me feel re-connected with the treatments I’ve chosen to receive. But I also want this to be a jumping off point for reclaiming authority over my body, and to remind myself (again) that I still control a great deal of my own health by my diet, exercise, sleep, and stress levels. I’ve done the equivalent of throw in the towel when it comes to my diet. I’ve gained so much weight in my 4 ½ years on prednisone. The prednisone certainly increases my appetite, but I’ve over-fed that hunger with compulsive stress eating. All these extra pounds aren’t helping me fight sarcoidosis—and aren’t caring for my heart and lungs either. I’ve been learning about anti-inflammatory diets, and I started phasing in some changes to what I eat today. I’m not giving up everything all at once, but am cutting out refined sugar and trans-fats this week—and adding fish oil supplements and three times the fresh fruit and vegetables I’m accustomed to. Maybe food won’t cure me. Maybe I won’t lose any weight by focusing on anti-inflammatory foods. So be it. I will be putting healthier food into my tired body. I can always make changes; I know how to count calories very well and can start tabulating my daily totals if I drop a few pounds.

I’m excited to be reclaiming my responsibility for my body. Making the commitment to follow the three changes above—meet Baughman, research medications, and change diet—didn’t feel like a chore, or that I was adding extra work to my already busy life. Instead I feel possibility. I already feel like I’ve reclaimed some of my autonomy. And there’s no medicine that can give me that.

1 Comment

  1. Barb said,

    Sounds autonomous to me! Holler if you need a buddy for any of the food stuff, and, I LOVE you!

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