I was a fairly normal kid, for a total weirdo. Sure I was shy, nerdy, antisocial, and found more joy in reading The Almanac than playing outside, but at least I had my health. While my sister and brother were frequently at the doctor for ear infections, strep throat, allergies, and other common childhood maladies, I had the constitution of a horse and perfect attendance. When they had to have surgery to remove their adenoids or get tubes put in their ears, I was proud of the fact that I had never had so much as a cavity. My mom was also frequently at the doctor's. She seemed to get diagnosed with many of the topical illnesses of the '80s that made for great "very special" episodes of my favorite sitcoms. She was diagnosed with Chronic Fatigue Syndrome like Dorothy Zbornack on Golden Girls. My mom was also a wise-cracking substitute teacher with a penchant for smacking me with a rolled-up newspaper... so basically, I was her Rose Nylund. My mom was chronically in pain, but always blamed it on two rather severe car accidents she had when she was younger, assuring me that this crippling pain would not be passed on to me or my siblings.

We didn't travel much. My mom had enough trouble getting up on a Sunday morning to drag us all to mass while my non-catholic father sat at home watching cartoons. It also didn't help that we were poor. If we went anywhere, it was because we had family there (most likely of the sick, dying or recently dead variety) and they were allowing us to sleep on their floor. This meant 99% of our "vacations" were to visit my mom's family in Wisconsin, a nearly 17 hour drive from our home in New Jersey. While my classmates would return from summer vacation having visited Disney World, I had the experienced sitting on my dad's shoulders while trying to catch a glimpse of a three legged deer at the world's saddest zoo.

As I entered my teens, I started randomly dislocating my knees which resulted in plenty of falls and even a fractured wrist. My mom took me to the doctor who assured her I was just clumsy and would grow out of this phase. I was always super flexible, but it never caused me any pain. Now my knees, shoulders, ribs and jaw were slipping out of their sockets and sending me into a white hot flash of searing, miserable agony. I became far less active than when I was little for fear of accidentally turning too quickly and having my leg snap backwards.

Instead of joining soccer or softball, I would sit at home and read the encyclopedia. Yes, I said THE encyclopedia. Singular. My family had one encyclopedia, Volume A. And they only had this volume because it was free. Those information pushers at World Book wanted to lure us into buying a whole set by giving us our first taste of knowledge for free, but my parents were onto their game. They firmly believed that enough people, places and things began with "A" to cover all their children's research paper writing needs. Purchasing the other volumes was a rip off. Perhaps they were right. We never spent one nickel on an encyclopedia, yet I managed to graduate with a 4.3 GPA and a fantastic knowledge of automobiles, Azerbaijan, and Airedale Terriers.

I continued my nerdy, focused life through college, graduating summa cum laude and quickly moving to Los Angeles (despite never having set foot in California before) to achieve my dream of becoming a television comedy writer. Since this blog is about my illness and travels, I'll skip past all the years of working 14 hours days for minimum wage while fetching people coffee, copying scripts and picking up dry cleaning. At age 29, I landed my first writing job. I was elated! All my dreams were coming true. I was earning a good living. I had an amazing writing partner, and most of all, I finally had great health insurance through my union!

With aforementioned amazing writing partner.

Unfortunately, right after that, the union went on strike, the show was canceled, and I spent a year unemployed while desperately trying to figure out where I went wrong in life. But I still had health insurance! And it was a good thing. I suddenly began experiencing lower back pain, along with crushing nerve pain shooting down my left leg. I hadn't been injured, so doctors were quick to dismiss me with a few Vicodin and instructions to rest while alternating between ice and heat. The pain did not go away. In fact, it got much worse. For the next 9 years, I visited multiple specialists including pain management doctors, rheumatologists, psychologists, psychiatrists, neurologists, physical therapists, and acupuncturists. I tried a multitude of non-narcotic medications, including several that were prescribed as off label use for pain. Most had little effect on me. A few gave me severe side effects including suicidal thoughts, nausea, vertigo, and electrical brain zaps. I was spending my days laying on the floor, taking four Advil every four hours, unable to function.

Doctor after doctor told me I was simply too young to have this level of pain. My blood-work wasn't showing any sign of disease and imaging only showed a slight herniation in my low back. Each one of these doctors told me the pain was in my mind, called me a drug seeker, or told me I simply needed to exercise and the pain would lessen significantly. I would spend an hour at the gym, six days a week. By the time I left the gym, I would be in tears from the pain. I tried traction, pilates, yoga, massage, supplements, diet changes, and nothing helped. Finally, I saw a neurosurgeon at USC who claimed spinal fusion surgery would be the cure to all my pain. Desperate for relief, I agreed to the surgery.

Immediately after surgery, I knew I had made a huge mistake. The pain was horrific. When the hospital staff tried to run a line to my arm to deliver morphine, my veins would quickly burst. This meant none of the morphine was actually being delivered into my system. It was pooling up under my skin and burning like I had been injected with bleach. They tried up and down my arms, my feet, my hands, and my neck, but none of my veins were strong enough. I could feel every second of post-surgical pain. The nurses pulled my parents aside and told them they suspected I was secretly an intravenous drug user and there was nothing they could do to manage my pain past loading me up with Benedryl so I would sleep and stop screaming out for help. After begging to be released for a week, I was sent home with bruises all over my arms, hands, feet, and neck, a prescription for oxycontin, a muscle relaxer, and a gigantic back brace.

I was seeing little improvement, and to make matters worse, my surgical incision did not seem to be closing properly. I made an appointment with a pain management doctor in my area who finally recognized that none of this was remotely normal. While he didn't know what was wrong with me, he was positive something was indeed wrong, and it was more than just a bad disc in my back. He referred me to a geneticist who quickly recognized I had a rare connective tissue disease called Ehlers Danlos Syndrome, Hypermobility Type. There is no cure, but after almost ten years of searching for an answer, someone was acknowledging there was something wrong with me. I wasn't some crazy drug seeker or a lazy, attention-seeking slob. I had a disease... and it had a name!

It's an odd thing to be diagnosed with a chronic, incurable illness. I was suddenly a member of a group I knew nothing about. I was disabled. Or is it, person with disabilities? See? I didn't even know how to refer to myself without inadvertently being offensive! It was like waking up one morning and being told I was Filipino. I don't know anything about the Philippines! I don't know the customs. I don't speak Tagalog. I was completely lost. And it's not like I had a circle of close Filipino friends to catch me up to speed. I needed time to digest this and do a whole lot of research.

You see, even though I had been living with considerable pain for a decade, I tried not to talk about it. I didn't want coworkers, boyfriends, friends or even strangers thinking I was weak, whiny, or otherwise sick. I kept thinking that if only doctors could figure out what I had, they could cure it, and I could move on to enjoying my success and traveling the world. But faced with the new found knowledge that what I had didn't have a cure, and that it could actually get exponentially worse, I made the choice to really buckle down and see as much of the world as possible before my health seriously deteriorated. That meant for every available hiatus, long weekend or period of unemployment between shows, I would head out on an adventure. It hasn't always been easy, but I've now visited 6 continents, 26 countries and 40 states, all on a budget and all in the last 6 years. I've formed several close friendships with other people in the disabled community, become more comfortable speaking up about my own struggles with invisible illness, chronic pain and mobility issues and become more politically involved. I love meeting people all over the world and listening to their stories. I plan to keep doing it as long as my health allows.