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  • Chapter One

    Open letter to all physicians, specialists, surgeons and students of medicine

    I live in acute pain from a disease of unknown etiology and crushing injuries from a car wreck, 16 years ago. I am a warm, communicative human being. I value my life, and am very grateful for my family (three sons, their lovely wives and three grandsons,) and wonderful friends.

    I bless all beings through my eyes and my heart and practice, really practice loving every being. My father taught me that.

    I’ve had a marvelous, amazing, rich, juicy life. That includes what I’ve learned from intense suffering; the result of a MVA (car wreck at 82 miles per hour with vehicle rolling over me) and 16 restorative major surgeries over the past fourteen years during which my life, as I had known it, was ripped away.

    I was 42 when it happened. A nationally ranked triathlete with three teen aged sons.

    My husband fell asleep at the wheel.

    I lived, despite coding a few times. A month in ICU with your hands tied down, no beeper and no talking trach is no walk in the park. Especially when nurses wean you from oxygen, four hours on and four hours off, with no warning. And there was no way to contact them, except eye movement when they passed. And, they rarely looked. I panicked so hard; I learned that there is a wall you hit, with panic, with pain, where they simply dissolve. Not many endure enough suffering to discover that wall. I’m honored.

    I was fed by two gastric tubes through my nostrils. I’d mess my bed, every morning and wait,helpless, in burning excrement. If a not so nice nurse was on duty I’d pass out from the pain of my pelvis being lifted, or legs moved apart. The soft tissue damage was immense. I probably looked like one of those down hill skiers tumbling, limbs askew, after being ejected from the vehicle, but it was tarmac, not snow.

    If I made the peace sign, a V, they’d inject liquid valium and oxycontin into a three cm cylinder connected to a central line in my chest. I remember the push, those first five seconds of relief, then cartoons like the first time you have laughing gas at the dentist, then I’d be out. Waking up was hard and that’s when the panic was the worst. The meds made me confused and I wanted to go home.

    My boys were instructed to tell me good bye each day during their ICU visits. I was in a medically induced coma for the first few weeks. I am told my tongue was sticking out of my mouth and that I looked like a three hundred pound Asian woman. I was pumped full of fluid to dilute multiple opportunistic infections which had caused my lungs to shut down. AARDS.

    My baby boy, Patrick was eleven at the time. He stroked my hair, I am told, and said “Mom, I know you are coming back. Listen, it’s true that your legs are broken and you’ve had lots of surgeries, but I want you to know, your teeth and face are fine." He knew I'm make it.

    After months of recovery and learning how to walk again I returned to work.

    I began having extreme pain. Flares of unknown etiology. I went from a size 2 to wearing my friends’ pregnancy pants, in three weeks. No doctors listen to a perimenopausal woman with swelling issues. Especially one who had somehow managed to survive a catastrophic car wreck and had been on life support.

    Years went by. I became disabled, and lived off of what I had stockpiled. I lost my ability to walk at times. I had spontaneous bruising across my torso, legs and arms. I had bone and joint pain which were debilitating. Flickering tongues of pain I marveled at, each lasting about four seconds, shooting around my body. And constant deep aching. Neurological symptoms. Hard, arching spasms across my abdomen. And each flare was worse than the previous one. Exercise of any sort seemed to exacerbate the bad.

    I referred to them as rip tides and tried my best to just make it through. And every time the pain struck it was like electricity. White light of pain. I knew they’d end and I’ve have days of life, unimpeded by pain, spasticity, blood vessels spontaneously breaking, swelling, lymph glands inflammation, mouth sores, weakness, or joint and bone pain. It would leave. It is impossible to describe the relief of life after pain. Students and practitioners should understand that expressing relief does not equate with mania.

    And, perimenopausal obese women with multiple symptoms should not be dismissed or relegated to pain clinics.

    I want my life back. I’ve never stopped trying to reclaim some semblance of wellness. I’ve never stopped doing everything I can think of in order to make my vehicle function, in order to fulfill what I came here to do in the first place.

    And this valiant action has caused me to be misdiagnosed over and over again. I am coached by doctors who do care. “Don’t use medical terms. Just answer their questions as if it is a deposition. Don’t be descriptive.” Ad nauseum.

    I’ve had Munchhausen listed as a differential, at Mayo. And later, the doctor apologized. A rarity. He said I just had so much medical knowledge. Where did I gain that?

    I’ve been diagnosed and undiagnosed with Whipple’s, Wegener’s MS, Lupus, Familial Mediterranean Fever, non alcoholic beriberi, irritable bowel, idiopathic cyclic edema, Clarkson’s disease (leaky capillary syndrome) PTSD, even manic depressive manic type with chronic euphoria. (I stay in alpha during E.E.G even while performing math computations.)

    I've had 21 scans reporting nothing amiss and was uninsurable due to a permanently deployed Greenfield filter in my vena cava. I worsened. I lost my ability to work, and it took three years to get disability. When I did, Ochsner opened me up and found that my liver had never been reconnected to my duodenum and I’d been pumping out necrotic fat for a decade, into empty spaces, which became infected. White cells in a spinal tap showed infection in my brain.

    MRI’s CT’s ultrasound and X rays were interpreted as “no abnormality” for ten years. My navel would bleed and then liquid would leak out for days. Liquid would shoot to my feet in bed, from my vagina, and I’d jump out of bed and more liquid poured on the floor. I collected it. Doctors tossed it at LSU without ever testing.

    Actually, the head of surgery there, Dr. Dean Griffen, laughed and kissed my forehead. He held my face in his hands and said liquid coming out of a navel I’d like to see that! And laughed so hard he had to take his glasses off to wipe his eyes. “There’s only gas and fecal material making your tummy push out, honey. Face it. You are mentally ill. You have worried yourself sick ever since that wreck. There’s nothing wrong with your body. It’s all right here” he said, tapping my temple.

    That drive home was the only time I ever lost hope. I kept a Glock on my nightstand and thought about putting it in my mouth and pulling the trigger, to save my boys from the bother and embarrassment of having to deal with a mentally ill mother. That, and the pain.

    But, I got over that notion, because I didn’t believe my mind caused that much pain. And I knew that the bruising and the fistulas moving fluid under pressure out of my body were real events.

    So, I persevered.

    I discovered that three of the needle sharp legs of a non-removable inferior vena cava filter I'd had placed inside immediately following the wreck were cutting into spinal nerve bundles, intestines and liver. I thought this could be the answer, having it removed. Dr. Kuo at Stanford created a way to access and remove it through my jugular and heart.

    I had the greatest hope of recovery. And, I was much better, for ten days.

    Then I developed abscesses in abdomen and jaw, kidneys and colon over the next five months. Possilby restoring blood flow, as the vena cava was 100% occluded, stirred up bacteria? I was treated with Flagyl, for anaerobic bacteria. I have been improving, but still have bouts of swelling with terrible pain in sacrum and lower back and difficulty breathing due to intestinal swelling and generalized edema.

    Why can't people get correct diagnoses and treatment in America? Why is the good ol' boy system still in effect, encouraging doctors not to reveal the etiology of an infection if it was hospital acquired during previous surgery and still showing up? Why can't I get help some where, from a medical team or a doctor?

    I applied to the NIH, to be a participant in a SCLS or Clarkson's study, but was denied as I do not have low blood pressure when I suddenly gain 15-20 pounds of fluid.

    I am in San Miguel de Allende, Mexico now. The sunshine and energy seem to be quite healing. I put myself on a maintenance dose of prednisone, 5 mg/day. The cost in pesos is 14 pesos, or $1.40 US for a box of 20.

    Why can't docs do a better job? I know there is a solution that would allow me to breathe easily, not weigh 200 pounds when my normal weight is 120, and to not have fluid burst out of my body with attendant pain. And I know there are tens of thousands of others out there, suffering in a similar fashion. I'd like to help everyone get well. xoxo

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