I used to clutch at my abdoman when the quiet, subtle cramping would come and think, I feel like I'm hemmorhaging. I would then squeeze this tought up tight and put it in the pile of crazy hypochondriac thinking. Duh. I'm obviously not hemmorhaging. Nothing's coming out. Nother ever does. I had been waiting every time for some crazy gush of blood, some sort of collapse on the floor to justify the loss and grind in my belly. In the absence of anything so outward and confirming, I assumed that I was neurotic and looking for attention: Munchausen Syndrome, lite. This embarrasssed me.
I now know that I was, in fact, bleeding internally. I was bleeding, and I knew it without having any concept of the pathology behind that fact. I just knew.
As a student nurse, I am often balancing a patient's understanding with what I know to be true. I know things, in the academic sense, which to me are incontrovertible and crucial to a patient's care. But I also know that patients, like me, are experts about themselves in ways that I can't ever touch. They speak the language of their own completely unique being, and I don't. I need the patient to be my translator. I wish more doctors treated from this perspective.
I think women are most vulnerable to this rift in medicine between what the doctor knows, and what the patient feels. Women's heart attacks went misdiagnosed for years because we present so differently than men. And because we so often describe ourselves in sensing and emotional terms, we are treated for conditions of hyper-sensitivity and unbalanced emotions; even when that sense and feeling is in fact chillingly accurate at diagnosis.
Medicine needs to start looking at women on their own terms. Otherwise, more and more of us will cease to trust or have any respect for the medical system. I am one of the lucky ones. I have ten years of lay experience in alternative medicine and almost 4 years of training in anatomy and allopathic medicine. I navigate the terrain of my own illness with an amazing toolbox. I want this safety net for all women, and I want us to start studying women's illness and treatment so that we can learn the map of feminine medicine.
Thursday, October 28, 2010
Wednesday, October 6, 2010
Nesting behind bars
I'm laying in the closet when I hear a knock on the bedroom door. I squeak the closet open and peer through.
“Who's knocking?” My face is squinched against the brightness I have suddenly let into my nest.
The knocking continues but no one responds, so I figure they're actually knocking on the bathroom door. We have seven people in our family and only one toilet. Statistically, if someone is knocking, it's going to be for bathroom access. I settle with relief into my Tijuana blanket and squueeeeerrrrrk the accordian folds of the closet door back into one flat panel. That's a tacky sound, I think. The maintenance guy should have fixed that when he was here today. Worse even than the classlessness of my unoiled hinge, however, is the possibility that it will lead someone to find me in the closet. At 33 years of age, it feels faintly ridiculous to be nesting in a closet. The potential for embarrassment causes me to reflect for a moment, however, and in so doing I realize that there is nowhere else I would rather be.
It's the first day of my period. This afternoon I carted my boyfriend's son off to the sweet shop so I could climb, stealthily, a little further into his heart, and as I watched him eat both an overfrosted cinnamon roll and a cookie the size of his head, I had a sumptuous urge to faceplant into the chocolate peanut butter cupcake we were saving for the other kids. Instead I settled for coconut milk ice cream in the sharp Fall air and fed on the happiness I felt to be Jack's Special Someone for just a while.
Later, when my ten year old asked me if I was okay, I grunted equivocally and then said, “It's the first day of my period.”
He understood immediately. Having lived with just me and his brother for four years, he has been party to both the monthly sugar-binge adrenaline high and the psycho danger mommy that follows. “You need your chocolate and you can't have it,” he said.
Nail on the head.
My blood stream is teaming with hormones that demand, in drug-like technicolor, SUGAR AND CAFFIENE AND SALT AND FRIED, and I can't give it to them. I'm eating applesauce and muffins made from almond flour and liver, for god's sake. When I really push the envelope, I eat frozen coconut milk sweetened with agave. It's like turning to a caged monster and saying, 'Would you perhaps care for a grapefruit?' Then the cage turns out to be unlocked.
I guess the closet is my way of keeping the monster in. I'm sorry baby, I can't feed you your tribute this month, I really love you I do, it's just that this disease will grow if I give you chocolate, and just as I murmur to comfort the beast I slide the padlock shut.
“Who's knocking?” My face is squinched against the brightness I have suddenly let into my nest.
The knocking continues but no one responds, so I figure they're actually knocking on the bathroom door. We have seven people in our family and only one toilet. Statistically, if someone is knocking, it's going to be for bathroom access. I settle with relief into my Tijuana blanket and squueeeeerrrrrk the accordian folds of the closet door back into one flat panel. That's a tacky sound, I think. The maintenance guy should have fixed that when he was here today. Worse even than the classlessness of my unoiled hinge, however, is the possibility that it will lead someone to find me in the closet. At 33 years of age, it feels faintly ridiculous to be nesting in a closet. The potential for embarrassment causes me to reflect for a moment, however, and in so doing I realize that there is nowhere else I would rather be.
It's the first day of my period. This afternoon I carted my boyfriend's son off to the sweet shop so I could climb, stealthily, a little further into his heart, and as I watched him eat both an overfrosted cinnamon roll and a cookie the size of his head, I had a sumptuous urge to faceplant into the chocolate peanut butter cupcake we were saving for the other kids. Instead I settled for coconut milk ice cream in the sharp Fall air and fed on the happiness I felt to be Jack's Special Someone for just a while.
Later, when my ten year old asked me if I was okay, I grunted equivocally and then said, “It's the first day of my period.”
He understood immediately. Having lived with just me and his brother for four years, he has been party to both the monthly sugar-binge adrenaline high and the psycho danger mommy that follows. “You need your chocolate and you can't have it,” he said.
Nail on the head.
My blood stream is teaming with hormones that demand, in drug-like technicolor, SUGAR AND CAFFIENE AND SALT AND FRIED, and I can't give it to them. I'm eating applesauce and muffins made from almond flour and liver, for god's sake. When I really push the envelope, I eat frozen coconut milk sweetened with agave. It's like turning to a caged monster and saying, 'Would you perhaps care for a grapefruit?' Then the cage turns out to be unlocked.
I guess the closet is my way of keeping the monster in. I'm sorry baby, I can't feed you your tribute this month, I really love you I do, it's just that this disease will grow if I give you chocolate, and just as I murmur to comfort the beast I slide the padlock shut.
Sunday, October 3, 2010
Run
"You have to be careful." My therapist sat across from me, beautiful even with her makeup just slightly overdrawn, and talked to me about the exhaustion. "I see women all the time who've been diagnosed with depression when in fact they have anemia, or a thyroid problem. Make sure you get those checked."
It was 2006. I was crawling, guerilla style, through a terrifying divorce of my own choosing. I was bone tired and living on a pendulum and, as was so often the case over the last several years, something felt intrinsically wrong. My therapist was right about everything but I wouldn't know it for years.
Soon after I left her care I was diagnosed with depression. And when I went back months later with an 8.5 x 11" piece of paper covered with a list of symptoms, explaining again that something seemed to be wrong, I was diagnosed with depression again. At that point, after that second diagnosis when the iron levels kept looking good enough and my thyroid showed no signs of distress, I finally called my friends and started trying to accept what my doctor was telling me. It wasn't cancer and I didn't have diabetes and my thyroid was fine and the horrible depletion I could feel in my bones, the strange drugged out distance I felt from my environements at times, the fear and anxiety and the debilitating exhaustion: they were all a result of an imbalance in my brain. It felt wrong but I knew that must be a symptom too, that displacement in my gut from the reality I was trying to face. I. Was. Depressed.
Except I wasn't. I had Crohn's and nobody knew it.
I was running this morning at 8 am, my legs eating up the miles with more hunger and speed than they have since last December, when I thought of that conversation with my therapist. I thought of struggling for a year to see myself as depressed. The rush in my legs as I ran this morning; my body's thrilled willingness to respond now that I am healing and nourishing myself correctly; the happiness I feel when I am working hard at a goal: they all tell me something so completely different from that diagnosis. Through all of this I have felt and wanted and pushed. It wasn't depression that held me under; it was bleeding, edema and heat in my bowels, and an inability to absorb the fundamental building blocks of survival.
The most romantic moment in my recent memory starts with me, several weeks ago, sobbing in the driver's seat of my minivan. My boyfriend Stephen is leaning in through the door and I am falling apart, just coming loose with my desperate need to be well. I have run recently, harder and faster than any other time since I got sick, and it has felt amazing. Except that now I have pain in my hips like glass shards and splintering bones. After only 1.5 miles of hard-earned freedom, I have arthritis that makes me waddle through the house and forces me to push myself out of chairs with my arms. I have failed to win, failed to control things enough to achieve that rush without horrible consequences, and I feel that something crucial has been stolen from me.
"I just want to run. I want to run again so badly." I gasp-gasp for breath and cry giant, kitchen faucet tears that chase each other down my face.
Stephen leans further in. His deltoid swells and strains the cotton of his t-shirt as he grips the edge of the door. His smile is made of indulgence, patience and admiration. "You're like a fucking Nike commercial, I swear to God."
I felt, in that moment, so proud to be fighting; proud to be stretching myself and wanting the best and risking, again and again, for what I love. And this morning, as I ran and felt my body kick into one gear higher than it did the last time I ran, as I risked arthritis and setbacks to test the boundaries again, I felt that same pride. I am not depressed; I am the furthest thing from it. All I lack is the physical strength to follow through on who I believe myself to be. Today, Asics steadily hitting the ground and chest free of pain, I came one of a million steps closer.
It was 2006. I was crawling, guerilla style, through a terrifying divorce of my own choosing. I was bone tired and living on a pendulum and, as was so often the case over the last several years, something felt intrinsically wrong. My therapist was right about everything but I wouldn't know it for years.
Soon after I left her care I was diagnosed with depression. And when I went back months later with an 8.5 x 11" piece of paper covered with a list of symptoms, explaining again that something seemed to be wrong, I was diagnosed with depression again. At that point, after that second diagnosis when the iron levels kept looking good enough and my thyroid showed no signs of distress, I finally called my friends and started trying to accept what my doctor was telling me. It wasn't cancer and I didn't have diabetes and my thyroid was fine and the horrible depletion I could feel in my bones, the strange drugged out distance I felt from my environements at times, the fear and anxiety and the debilitating exhaustion: they were all a result of an imbalance in my brain. It felt wrong but I knew that must be a symptom too, that displacement in my gut from the reality I was trying to face. I. Was. Depressed.
Except I wasn't. I had Crohn's and nobody knew it.
I was running this morning at 8 am, my legs eating up the miles with more hunger and speed than they have since last December, when I thought of that conversation with my therapist. I thought of struggling for a year to see myself as depressed. The rush in my legs as I ran this morning; my body's thrilled willingness to respond now that I am healing and nourishing myself correctly; the happiness I feel when I am working hard at a goal: they all tell me something so completely different from that diagnosis. Through all of this I have felt and wanted and pushed. It wasn't depression that held me under; it was bleeding, edema and heat in my bowels, and an inability to absorb the fundamental building blocks of survival.
The most romantic moment in my recent memory starts with me, several weeks ago, sobbing in the driver's seat of my minivan. My boyfriend Stephen is leaning in through the door and I am falling apart, just coming loose with my desperate need to be well. I have run recently, harder and faster than any other time since I got sick, and it has felt amazing. Except that now I have pain in my hips like glass shards and splintering bones. After only 1.5 miles of hard-earned freedom, I have arthritis that makes me waddle through the house and forces me to push myself out of chairs with my arms. I have failed to win, failed to control things enough to achieve that rush without horrible consequences, and I feel that something crucial has been stolen from me.
"I just want to run. I want to run again so badly." I gasp-gasp for breath and cry giant, kitchen faucet tears that chase each other down my face.
Stephen leans further in. His deltoid swells and strains the cotton of his t-shirt as he grips the edge of the door. His smile is made of indulgence, patience and admiration. "You're like a fucking Nike commercial, I swear to God."
I felt, in that moment, so proud to be fighting; proud to be stretching myself and wanting the best and risking, again and again, for what I love. And this morning, as I ran and felt my body kick into one gear higher than it did the last time I ran, as I risked arthritis and setbacks to test the boundaries again, I felt that same pride. I am not depressed; I am the furthest thing from it. All I lack is the physical strength to follow through on who I believe myself to be. Today, Asics steadily hitting the ground and chest free of pain, I came one of a million steps closer.
Thursday, September 23, 2010
Day 98
I just walked into the kitchen and suckled a tomato. It was dark as blood on the inside and lycopene sweet, and I knew I couldn't have any more than the half I had already sliced and eaten. I lifted the butt end slice, held it up like a fine caviar hors d'oeuvre, and sucked down the taste of summer.
Now my stomach hurts.
I miss eating everything. I miss the stuff stuff of mindless consumption and having more calories in one meal than some families get in a day; the greasy crazy mouth explosions and the whatever's in the fridge, I'm too busy to think about food kind of eating. I crave culinary abandon.
Instead, I have become an austere observer. The food is before me. I feel for the jolt of adrenaline that tells me this food will hurt me. Maybe I hope for the calm I feel when I think I will get through the day on these particular calories. I'm muscle testing on my autonomic muscle, and I'm a little embarrassed about it. It's not like I get it right all the time. Who am I to trust myself when my own immune system is making me sick? Clearly I've been measuring something wrong.
Food enters my mouth on a subsiding exhale and I work it through a gateway of fear over what will happen next. I swallow. The smell of the food lingers and I ask my body if I am going to be okay. Then I rest. Then I eat again. At the end of the day I try to guess what made me better and what made me worse. It's a clusterfuck of varying factors and I laugh a little while I try to figure it out. I'm still 102 lbs and exhausted. Nothing is working well enough.
98 days ago my body began the flare up that would finally get me diagnosed. It escalated until I was weak and useless, scared and covered in night sweat. It brought me to that gurney on which I woke, drowsy and surprised, to the chopping ax of my diagnosis.
"It's Crohn's."
And just like that, I became a girl with a disease. The years of being tired, the effect of stress on my intestines, the vague muddle of my mind in the face of everyday tasks: all were tied with a bow and handed to me in a brand new box. I want to make that box my bitch. I want to take the whole image of girl with disease and knock it across the yard with a baseball bat. I want to grow and thrive again and I want to walk away, hands clapping across each other as I brush that bullshit off.
Here are my goals.
Gain 10 pounds
Get my Hgb up to 13 and maintain it there
Run 2-8 miles four days a week without pain
Spend my weekends playing hard, and have the energy to fully enjoy it. I want to hold nothing back.
Serve my patients with the compassion I needed and got this summer
Not for a moment give up on being beautiful just because I'm sick.
Now my stomach hurts.
I miss eating everything. I miss the stuff stuff of mindless consumption and having more calories in one meal than some families get in a day; the greasy crazy mouth explosions and the whatever's in the fridge, I'm too busy to think about food kind of eating. I crave culinary abandon.
Instead, I have become an austere observer. The food is before me. I feel for the jolt of adrenaline that tells me this food will hurt me. Maybe I hope for the calm I feel when I think I will get through the day on these particular calories. I'm muscle testing on my autonomic muscle, and I'm a little embarrassed about it. It's not like I get it right all the time. Who am I to trust myself when my own immune system is making me sick? Clearly I've been measuring something wrong.
Food enters my mouth on a subsiding exhale and I work it through a gateway of fear over what will happen next. I swallow. The smell of the food lingers and I ask my body if I am going to be okay. Then I rest. Then I eat again. At the end of the day I try to guess what made me better and what made me worse. It's a clusterfuck of varying factors and I laugh a little while I try to figure it out. I'm still 102 lbs and exhausted. Nothing is working well enough.
98 days ago my body began the flare up that would finally get me diagnosed. It escalated until I was weak and useless, scared and covered in night sweat. It brought me to that gurney on which I woke, drowsy and surprised, to the chopping ax of my diagnosis.
"It's Crohn's."
And just like that, I became a girl with a disease. The years of being tired, the effect of stress on my intestines, the vague muddle of my mind in the face of everyday tasks: all were tied with a bow and handed to me in a brand new box. I want to make that box my bitch. I want to take the whole image of girl with disease and knock it across the yard with a baseball bat. I want to grow and thrive again and I want to walk away, hands clapping across each other as I brush that bullshit off.
Here are my goals.
Gain 10 pounds
Get my Hgb up to 13 and maintain it there
Run 2-8 miles four days a week without pain
Spend my weekends playing hard, and have the energy to fully enjoy it. I want to hold nothing back.
Serve my patients with the compassion I needed and got this summer
Not for a moment give up on being beautiful just because I'm sick.
Subscribe to:
Posts (Atom)