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My Fall Down the Diagnostic Rabbit Hole

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On Thanksgiving morning this year, I had an eye opening moment. After breakfast, I popped open the Thursday compartment of my obscenely large day-a-week pill box. Staring down at the mass of capsules, caplets, tablets, sublingual tabs and liquigels, I squinted at an anonymous pair of gray pills. For the life of me, I couldn't remember what they were for, but clearly, a doctor had prescribed the medication. I popped them in my mouth and washed them down with my lukewarm tea. As I trudged toward the bathroom for a shower, I suddenly felt as if a bucket of ice water had been thrown in my face. How and when had I devolved from an empowered patient to a do-as-I'm-told-no-questions-asked dishrag?

This year was meant to be fabulous and I wanted to kick it off with a bang. I had a book coming out and an international media tour beginning the first week in January. Good times. But an uninvited guest arrived at my party: the flu. Nasty and miserable, but simple enough. I carried Purell and sneezed into my elbow so I wouldn't pass my plague to Meredith Viera or Joy Behar. I slept between interviews and drank lots of fluids. I was responsible. Not like those bastards who cough on public transportation without covering their mouths. I was going to recover quickly and wouldn't take anyone else down with me.

And while most of my symptoms subsided after I settled back into my life in Chicago, I was still achy and lethargic. I could barely peel myself out of bed in the morning. I was assured by my editor that I was suffering from publishing's version of post-partum depression. I was skeptical but she said she'd seen it a million times. All I needed was a little pampering and rest.

But after a month I still felt like crap and was adding to my roster of complaints: swollen joints, my hair was falling out, I felt dizzy and light-headed. One day my husband came home from work to find me investigating my symptoms online. He shook his head at me grimly. I'm not allowed to use WebMD anymore due to an incident when I used the website's symptom checker at 3am because of an insane amount of fiery discomfort in my lady parts and diagnosed myself with herpes; and since I haven't had sex with anyone besides my husband for years, the STD must have come from the piece of ass he was seeing on the side; so I dragged him with me to my doctor's office where I looked him in the eye while my feet were in the stirrups. I was watching for signs of guilt that he put me in this position and then the doctor said, "Ouch! That's a nasty allergic reaction, did you guys change laundry detergents or something?" And she gave me a Benadryl and sent us on our way. Jim never actually mentioned the incident again, but it was clear: my privilege to self-diagnose via the internet had been revoked. As Mark Twain said, "Be careful about reading health books. You might die of a misprint."

But at the beginning of this year, I was feeling desperate.

Plus WebMD is comforting, it doesn't look at its watch when I'm describing my symptoms because its office staff hasn't triple-booked me. It compiled my symptoms, sent them through its algorithms and spat out my diagnosis: the auto-immune disease, lupus. Well, if my computer says I have lupus, it must be true. I immediately checked out Living With Lupus support forums and googled how to lessen the symptoms through diet, exercise and alternative therapies. Jim suggested that before I do a massive overhaul of my lifestyle that I go see my primary care physician. I did. She ordered a multitude of blood tests and came up with the answer. I had herpes. No, I'm joking. I tested positive for lupus.

And my career as a full-time sick person was launched. Nothing is clear when you're diagnosed with an auto-immune disease. Like snowflakes, no two suffers are alike. Treatment is done via trial and error, weighing whether the side-effects are worth the benefits. I saw a rheumatologist, an expert in the area of diseases of inflammation and auto-immunity, and he informed me that although I tested positive for lupus, the other markers that would determine the exact type were inconclusive. He would begin treatment immediately, but he couldn't give me a definitive diagnosis. I was given a retinue of baseline tests so when I get worse, it'll become clear what I've got. The problem is, when you're sick and you're told your going to get sicker, you walk through life waiting for the other shoe to drop. Each ache or pain could be an indication that your health is declining, or that you're losing your mind and becoming a complete hypochondriac. You begin to lose trust in your own body and your ability to care for yourself. You begin to lose power. And most annoyingly, when people ask how you're doing, you begin to answer, "Eh."

I bounced like a pinball from specialist to specialist, from Western to Eastern medical practitioners, from conventional to alternative therapies. My husband and I spent every cent we had and countless hours searching for answers. Wherever I went, I was diagnosed with something new, each specialist giving me a place inside the boundaries of his expertise. I felt as if everyone was trying to persuade me I had a new illness. Even my husband had me convinced I was going deaf so I had my hearing tested. But the audiologist told me I had excellent speech recognition and I probably couldn't hear what my husband was saying because he mumbled. In dark times, even the smallest victories can be life preservers.

I had always defined myself as a very healthy person and I did my best to avoid getting sick, but now I was a sick person desperate to get healthy. Although I believe my primary care physician to be a good doctor, because of the way the health care system is set up, she cannot be my health manager. Actually, allow me to backtrack, due to my experience over the past year, I've learned that "health care system" is a misnomer. There's no system, there's no cohesion. And there is no existing way to close the loop of communication about our health. Case in point: four of my doctors have online patient portals, which is fabulous. I can connect with them electronically, see my latest test results, have access to any historical health files that the data entry clerk has had time to key in. The problem is, their systems don't overlap. The right hand doesn't know what the left is prescribing. I need a manager. An old-school, skim 10% off the top manager who'd call me up and say, "Darlin', this is Phyllis. Don't forget to ask the neurologist about your low blood pressure. And make sure they get enough cells this time during your biopsy." My insurance has paid out ridiculous amounts for redundant treatment and tests. Wouldn't it be better if they contributed to a fund that allowed me to hire a health advocate? The only health care professional in my life who regularly champions my well-being is the pharmacist at Walgreens. He helped me catalog all my pills and scheduled when they should be taken during the day to avoid drug and food interactions.

My sister works as a critical value coordinator at a New Haven Connecticut hospital. Her mission is to eradicate the number one reason patients are misdiagnosed: Miscommunication between their caregivers. Right now we're all left to our own devices. We have to manage our own care. But how can we have the clarity to make the right choices when a) we're not experts and b) we're in a fog of fear over our conditions? How can someone regularly cast in the role of victim be empowered enough to advocate for herself? Now, I'm a pretty tough cookie and I've educated myself about my body but I can't always keep up. And I am lucky enough to have a dependable support system: friends and family who check in about my health and offer their help, a caring and sympathetic employer, and a lovely husband with the best attribute a wife could wish for: health insurance. (I love you, baby). What on earth would I do if I were on my own, without the wherewithal to ask a doctor what that doohickey is for and shouldn't he disinfect it before he touches me with it?

Luckily for me, Thanksgiving was my Independence Day and I've grabbed back the reins of my out-of-control, fragmented health care. I have a second wind and have started to insist my physicians speak with each other. On the phone. I even fired one of my doctors who never responded to my questions in a satisfactory manner. So while congress hasn't yet decided whether healthy American citizens are worth their votes, and a Virginia judge has decreed that it's unlawful for the government to require us to be covered against the possibility of health maladies (I guess Virginia is specifically for Lovers who won't ever get sick or injured. Or pregnant. Or depressed. Or old.), I've come to my own conclusion: As a patient, I have to be a damsel in distress and my own hero all rolled into one. While I might dream of having a partner in health, I honestly don't think I ever will. That knowledge inspires me to be vigilant when I visit the doctor. I have to organize my own health management without allowing myself to be beaten down by the "system." Because in 2011, when people ask me how I'm doing, I wanna say, "I'm pretty damn powerful, thank you. How about you?"