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.

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.