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,  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.

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.