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.

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