Life, Death and L.A.

In the last post, I was in a state of rebellion. I was living in Seattle, and feeling physically better. Convinced I was misdiagnosed with Crohn’s disease,Β  I stopped taking immunosuppresant drugs. It’s true I had been misdiagnosed, but I didn’t know this for sure yet. I also didn’t know that I had another potentially life-threatening autoimmune issue, and I knew nothing about how food allergies and intolerances could create massive inflammation. I didn’t even know I had food sensitivities, and that the medication I was taking was preventing me from a serious health crisis at that time.

I remember how liberating it felt to leave the big orange bottle stuffed with large capsules untouched. It was an appreciated break from having big pills get stuck in my throat on the way down, and from the side effects, ironically, that mimicked the very disease I was diagnosed with: nausea, vomiting, diarrhea, dizziness and fatigue.

It didn’t take long for the inflammation to unleash with angry force. I didn’t know that every day I was eating copious amounts of foods that I was severely allergic to. But my body knew, and there was no way to ignore it. The extra weight I put on quickly flew off. The severe food poisoning symptoms – vomiting, excruciating pain and diarrhea – made it difficult for me to work. Within a few weeks off medication, I had dropped down to 80 pounds and weak and emaciated, had to quit my job doing ephemera repair at the bookstore downtown.

No, worries! My optimistic spirit said. I was dating my co-worker and he was transferred to manage the bookstore in West Hollywood. Maybe all I needed was sunshine and happier dispositions. While I enjoyed the lower cost of living in Seattle and the short walk to admire the beautiful view of Puget Sound from Pike Place Market, the grey skies, chilly weather, aloof culture and lack of diverse, vibrant energy in the city left me pining for someplace that felt more like home. There must be a reason so many New Yorkers migrate to L.A., right?

We packed up a U-Haul and drove to California. My boyfriend went to work at the bookstore in West Hollywood, and I fought hard to maintain denial of my full-blown health crisis because that sparkling sunshine made my spirit feel so good! The warm weather alleviated intense aches and pains, and the neighbors were so friendly. Beautiful women smiled sweetly at me as I walked down the street. L.A. had more going on than Seattle, so it felt more like home, but without the bitchy attitude of New York, and without the crappy weather of both those cities. I found my utopia, and I didn’t want to leave. My intuition said, this is where you belong. Something wonderful will happen here.

But timing wasn’t right, and hopeless events aligned, forcing me to leave. First, my boyfriend was gay. How did I know? I came home one day to find him and a very feminine man friend watching my Breakfast At Tiffany’s DVD. Then, while unpacking, I came across a bundle of notebook papers that turned out to be a diary entry. In it, he rambled on about his feelings for a boy on the bus and how much he desired him and what did this mean. He may have still been trying to figure it out, but to me it was very obvious. He was gay. And I was done.

Second, I wouldn’t be able to deny my dwindling condition much longer.

I packed up my things in a suitcase and stayed with a friend’s sister in Burbank for two weeks, wrestling between what my spirit wanted and what my body needed. My health rapidly declining, my body was in starvation mode, unable to digest anything, dangerously malnourished. I had lost all muscle built from weekly gym workouts, a few years of yoga practice, and long city walks, and could easily feel the bones jutting beneath my thin skin. I was too weak to stand in the shower, so I bathed sitting down. I slept on the couch, waking to view the sun beaming outside, rays blessing the balcony. But I was too weak to get out and enjoy it. The most I was able to physically accomplish was walking from the couch to the bathroom. I had to accept defeat. I wouldn’t be getting better. I wouldn’t be able to work. I had to fly back to New York and accept I needed to see my doctor.

People can be really mean, and discriminatory. Like the movers my friend’s sister found to help me ship some of my things to New York, they looked at me with horror, their words thick with judgment as they said to me, “You have AIDS, right?”

“No,” I said. They still kept their distance.

When I boarded the plane from a wheelchair, helped to my seat by the flight attendant, fellow passengers looked at me with dread in their eyes. I could telepathically hear their assumptions: “Cancer,” “Eating disorder,” “I hope whatever it is, it’s not contagious.”

I was rolled off the runway in another wheelchair, but stubbornly refused to remain seated all the way to the entrance. It hurt my pride. I felt humiliated by my appearance. I was a strong person, and my body didn’t reflect that. I couldn’t bear the thought of someone pitying me, the fearful looks alone were hard to take. It was the definition of negative attention. I pushed the wheelchair away, hobbled and limped toward the exit.

The next day, I was once again sitting across from the expensive wood desk, facing the “top Crohn’s expert” in Manhattan who said to me, with a slight panic in his eyes, “If you aren’t admitted to the hospital right now, you won’t live longer than eight days. Even if you are admitted, I can’t guarantee you will survive.”

I sat quietly in the leather chair across from the doctor, staring at the floor as I pondered my decision. I had been in and out of hospitals a few times by now, needing IV drips for dehydration, MRI’s to monitor the inflammation in my small intestine, EKG’s for tachycardia and supervision after passing out. The visits had been stressful, that first one when I was 21 traumatic, I honestly felt death may be a better option than another hospitalization.

After a few deep breaths and what felt like an eternity of silence, I chose life.

Next time I post, I’ll tell you how that went down.

Medical Intuition Tip: Don’t let fear block you from moving forward.

The First Rebellion

Last time, I shared how I was a loyal patient. Well, that lasted two years. Then I rebelled. It started with a move, which being a New Yorker was a rebellion in itself. Some born and bred New Yorkers are really obnoxious about their loyalty to the city as if it should have it’s own flag. Like my boss at the time, who was an entertainment agent. He was a really good guy with a big heart. I was an intern, and he had dreams of me becoming one of the literary agents at his firm when I graduated. He once paid for one month’s rent when I was overrun by medical bills. When I worried how and when I would paid him back, he insisted it was no big deal and that I forget about it. That’s what I mean, he had a big heart. But he had that stereotypical New York City attitude. When I told him I was moving to the West Coast he said, “Well, you know what they say. If you can’t make it here…” I think that was his awkward New York way of saying he’d miss me.

I knew stress wasn’t good for my health, so I decided moving out of the city would help my situation. The rents were high, the streets were incessantly chaotic and the lifestyle was gyrating. I was tired of working multiple jobs and still being broke. I was denied Medicaid working minimum wage jobs, told my income was too high, and $30,000 of hospital debt tanked my credit score. The little time I had between college classes, my internship, babysitting and my job at a bookstore, I called pharmaceutical companies asking for ways I could afford the expensive medication my doctor said I would “die” if I stopped taking. My best friend moved to Seattle at the height of it’s coolness in the nineties, when bands like Pearl Jam and the Foo Fighters were dominating airways, and the movie Singles portrayed an approachable, down-to-earth, albeit quirky dating scene. My friend said Seattle was way more affordable than New York, and more of a laid back lifestyle. What stressed out twenty-something wouldn’t be intrigued by all that?

I moved to Capitol Hill in 1997, rented a charming little studio apartment with hardwood floors, a vintage eat-in kitchen and a big walk-in closet with a window where I set up a desk and took an online short story writing class. I attempted to expand an edgy, urban magazine called Proof: Downtown I had self-published and sold on consignment all over New York, with the help of unpaid writers and interns. (My Proof feature, “How Redefining Our Perception of Beauty Can Change American Culture as We Know It” is noted in the sociology book In The Flesh: The Cultural Politics of Body Modification by Victoria L. Pitts). The Seattle crowd I met on Capitol Hill at that grunge-y time didn’t have the ambitious drive of twenty-somethings in Manhattan, and my cross-country publishing venture fell apart.

Dusting myself off from that fail, I hired a temp agency to find me anything. Finding a job, for the first time in my life, wasn’t easy. The local papers and news channel weren’t hiring, I was shocked by the scarce media opportunities. I soon afforded my ridiculously low rent working part-time as a secretary at a real estate company. It was the most boring, lifeless job I ever had. But it paid the bills, so I stayed for a while, continuing to look for publishing jobs which were non-existent. Up until then, I thought every city was a media hubbub like Manhattan. I was wrong. I ended up settling for a lower paying job working at a specialty bookstore where I mended ephemera. It wasn’t my highest potential, but I was happier there than stapling one hundred photocopies of real estate listings in towns I never heard of.

Health care was more accessible in Seattle than New York. I didn’t need to apply for Medicaid there. There was a clinic near my apartment that offered sliding scale fees for doctor’s visits. The doctor at the small country-style clinic recommended an acupressure point for pain, something I hadn’t heard of before. Harborview, the city hospital, said my income qualified me to receive free medication. I left their pharmacy with a year’s worth of low dose birth control pills, a prescription given to me for horrendous periods.

I started to gain weight, something new for me. I took it as a sign the less stressful lifestyle was helping as I felt it would. Feeling validated, I decided to trust my gut feeling about being misdiagnosed. I stopped taking all of my immunosuppressant drugs. For a few weeks, I felt relieved. I was free from those toxic pills. Maybe I was cured!

What I didn’t know was the immunosuppressant medication was controlling a dangerous amount of inflammation. I didn’t know that while I was right I had been misdiagnosed with Crohn’s disease, I did have another serious medical condition that remained undetected.

And this is what led to the next hot mess. I almost died.

Medical Intuition Tip: Don’t make a hasty decision without having all the information yet.

Down The Rabbit Hole

In the previous blog, I mentioned I had been diagnosed with Crohn’s disease and my intuition told me from the start that the doctors had missed the mark. I’m going to take you back to the beginning now, when the relationship with my medical intuition was akin to a buzzing fly – it was there, audible, but largely ignored. That’s when I fell down The Rabbit Hole.

It was 1995, I was living in New York City and this was my second emergency room visit at Beth Israel Hospital. The first time, I was admitted with a 104 temperature. They gave me Tylenol, watched me for a few days and sent me home. The fever came back just as fierce, along with raging intestinal pain, debilitating exhaustion, and flu-like symptoms I had for a few months prior. This time, I had lost 30 pounds and looked severely anorexic, there was no denying this was more than a passing bug.

They ruled out a gynecological problem in a traumatic way. Five male doctors in the ER surrounded me (it must have been an intern opportunity), my legs spread, examining my cooch. They didn’t bother to ask my 21-year old self if I had ever been sexually assaulted. I had. I felt violated again, and deeply humiliated. They tested me for parasites, negative. Weak, feverish and feeling food poisoned, I was confined to a hospital bed for nearly a week. My intuition felt the doctors were pressured to make a decision about me. I was an uninsured, broke college student lying in an overcrowded city hospital without a concerned parent asking questions, without an advocate. Just a bunch of flowers, gifts and cards from friends and co-workers. Diagnose her and get that bed free is what I heard.

When the doctor declared I had Crohn’s disease, he said it with little confidence, as if it were the closest diagnosis he could make. And it was good enough for him because his patient would get discharged and he didn’t have to take sixteen pills a day for the next decade. He never had to see me again.

I researched Crohn’s disease and I didn’t have many of the determining factors. Logically, my mind said, this doesn’t explain my symptoms. Intuitively, my soul was yelling, “Um, yeah, no! This is not the right diagnosis! It’s something you’re eating!”

A few years later, none of the medications prescribed were working. One of the prescriptions created ulcers in my esophagus, and a bunch of other nasty side effects. Increasingly frustrated, I made an appointment with my Crohn’s doctor, considered “the best” expert in New York City. I sat across from his expensive wood desk and said, “I’m pretty sure something I’m eating is causing my symptoms.”

He smiled at me with a look that said, “Aww, isn’t that cute!”

“Every time I eat certain foods, I get sick,” I patiently continued, ignoring his pitying eyes. “When I don’t eat them, I feel better.”

His hands clasped together in a power meditation pose. He dropped his chin and slowly explained, as if in addition to Crohn’s I had a learning disability, “What you eat has nothing to do with your condition.” He smiled like the Cheshire cat, tail flicking.

The good patient that I was, I nodded and dutifully took the medication prescribed. Even though it wasn’t working. Even though it was making me worse. Because what did I know? I was just a lowly, ignorant patient. He was the expert. He should know best.

Medical Intuition Tip: Do not assume because someone is hailed an expert that they will be the right guru for you. Always trust your intuition.

Medical Intuition 101: It Nags

I was in my late twenties and I didn’t take my intuition seriously. One of my friends, who was pursuing a Master’s in social work, said I was such a good reader of people I should become a psychologist. I entertained the idea, spent one year working toward a PsyD degree. I quickly realized my ability to read people wasn’t enhanced by studying clinical psychology. The courses, though interesting and useful for personal development, were analytical, and thinking of people this way, trying to fit them into boxes based on their behavior, shifted me into ego. When analyzing people through ego, I found my ability to organically read and understand people wasn’t as easy. In fact, it felt very complicated. I asked myself, “Why do I need to go through all of this complex theory when I can tune into people and get right to it?” Then came Statistics. And I said, I’m out. I happily returned to my first career, newspaper reporting, where I could use my intuition freely while interviewing people and still feel I was making a difference.

I was used to naturally using intuition to help confused friends and family seeking clarity, but I didn’t realize that I also had the ability to read myself. I had always been a spiritual person, believed in angels, and prayed to saints, Jesus and Mother Mary. But I didn’t think I was anyone special, that my guardian angel would go out of his way to help me out. I didn’t think God installed a GPS in my soul, one that would automatically guide me, whether I listened or not.

This time, in my late twenties, I chose to listen. This health crisis was too loud to ignore, and I had a nagging assurance that I had the Epstein Barr Virus and it was making me very sick. I refused to continue suffering without receiving validation. So I asked my primary care doctor in Long Beach, New York, to test me for it. He reluctantly did.

My heart was racing as I sat in his examining room. This was the moment when my gut feeling would be validated – or not. Maybe it was just psychosomatic. Maybe I didn’t have the virus and this was all in my head. No, a stubborn voice told me. This is not in your head. You are not making this up. You have the virus!

The tall, skinny doctor walked in wearing an outdated maroon and beige striped shirt, nerdy wire-rimmed glasses, his thick, wavy black hair looking very Kramer-ish. He slid the lab results out of a folder.

“Well?” I asked, sitting on the edge of the cold, steel examining table.

“Yes,” he confirmed.

“I do have an active Epstein Barr infection?”

He hesitated. Sighed. Rolled his eyes toward the ceiling. “It doesn’t mean anything,” he said with irritation. “Everyone has this virus. Listen, I think you’re having a hard time dealing with the fact that you have Crohn’s disease. I’m going to give you a referral to a psychiatrist, it can help.”

I felt my face get hot, my muscles tighten and a great inspiration to shout what a condescending dickhead he was. I knew my symptoms weren’t depression. I knew my symptoms weren’t Crohn’s disease. In fact, I didn’t believe I had Crohn’s disease. My intuition negated that diagnosis the minute it was made. In a few more years, I’d receiveΒ  validation that I was right about that one, too.

That inner nagging, the kind that isn’t just a hunch, it actually makes you feel anxious, uneasy, panicky – that is your intuition screaming to get through to you. Your guardian angel may send you signs, but you miss them. Your heavenly guides may try other ways to get through to you, but you’re still not getting it. Then the Divine awakens your inner GPS and when the doctors are telling you turn left, all you hear is turn right and if you don’t turn right you just know you’re going to get lost. So you start to feel anxious. And if you’re unsure of what direction to take next, you’re stuck in a conundrum. You know this doesn’t feel right, but you’re not sure what your other options are. That’s when doubt and fear take hold and say, “Look, you have no proof. Just trust what they say. You need some kind of treatment, and maybe they’re right.”

If your story is anything like mine, the proof will eventually come that the condescending dickheads weren’t right, and you were all along.

Doctor’s oath: First, do no harm. Patients oath: First, trust your intuition.