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    Posted February 5, 2014 by
    kozfear
    Location
    Berkeley, California
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Chronic Pain and the Insistence of Disbelief

     

    I was never a headache person. I grew up with a friend who suffered migraines, but could never really comprehend her pain.

     

    But that all changed for me seven years ago, the day of my first headache. I could barely see to call for help, was vomiting up water, and when I got to the ER my temperature was 104. Even after two shots of morphine, the pain would not relent. After a simple blood test came up negative, I was sent home with basic pain medication and told the pain would pass, and it did...two weeks later.

     

    It was a couple months after that when they started again. At first it was only a few nights a week, then five, then starting earlier in the day until they just stopped stopping. I found myself living with some type of headache all hours of the day, everyday.

     

    The pain was bad enough--I was confused, baffled, overwhelmed--but it was the disbelief that tore my comprehension of the world apart. Coworkers thought I was making it up, seeking attention, being lazy; friends grew tired of my increasingly flaky behavior and stopped calling; my family thought I was being histrionic or exaggerating for their benefit; many called me a drug addict, a med-seeker, doctor-shopper.

     

    I've seen 3 chiropractors, 6 neurologists, a rheumatologist, allergist, homeopaths, 4 acupuncturists, 3 physical therapists, psychologists, nutritionists; I've done Reiki and Pilates and cranial sacral and shiatsu, medical massage, deep tissue therapy, biofeedback and neurofeedback and cupping; I've had MRIs and CAT scans, a lumbar puncture and an occipital nerve block and a sleep-deprived EEG, not to mention the dozens of "preventative" medications that did everything from helping me sleep 16 hours a day to inspired manic episodes I can still barely remember.

     

    But none helped my pain.

     

    The one thing most of these doctors and specialists had in common was this: the complete inability to listen. I explained my symptoms, the sensations, the intensities. I kept pain journals and even took to painting animal skulls in an attempt to illustrate my experience.

     

    I was told, "that can't be," or, "you're too young for anything to really be wrong with you." I was treated for things I expressly explained I did not have, because Dr. knows best.

     

    There were times I did not want to keep living. The idea of suffering through constant pain for--possibly--the rest of my life was inconceivable to me. The common parlance of "fighting" this "war" within my body drove my despair all the deeper.

     

    It was almost an accident that led me to my pain specialist. My grandmother wanted me to try chelation in yet another desperate-attempt-to-try-anything, and in the midst of my response to the doctor's banal "So, why are you here?" he stopped me with his confident gaze and asked, "You know that's what I do, right?"

     

    I'd heard of these pain doctors before, and I knew many of them treated with methadone, something I wanted NO part of. But this guy was different--he listened. He took me off the Fentanyl patch that wasn't working and tried me on something else; he adjusted the dosages until I could feel a real difference; he helped me research what I was experiencing until we came up with a tentative diagnosis--New Daily-Persistent Headache (NDPH, sometimes CDPH or CDH).

     

    I've since been to an inpatient Chronic Pain program, where I met others whose pain was completely different from my own but whose stories were nearly identical. I've learned not to take my pain so personally, to have compassion for myself and not treat my body as something separate from what *I* experience.

     

    Invisible illnesses are particularly cruel, since those on the outside cannot see the source of the ailment and often insist it must be "all in your head." There is no apparent cause and effect. There are no easy answers, and even fewer resolutions. Comfort is in short order.

     

    One of my inspirations these past several years has been the poet Tony Hoagland, who wrote:

     

    Often we ask ourselves
    to make absolute sense
    out of what just happens,
    and in this way, what we are practicing

    is suffering,
    which everybody practices,
    but strangely few of us
    grow graceful in.

     

    I've had to reconcile that I may indeed carry this pain the rest of my life, but that doesn't mean I can't get better. Pain is part of my body now, like nose and hands and feet, but that need not mean I cannot go gracefully into the world, naysayers and all be damned.

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