Wednesday, March 30, 2011

Econ 101

In 2009, the US Census Bureau estimated that there were more than 50 million Americans living without health insurance. Last summer, I unexpectedly became one.
True, I am at least partly to blame for my situation. I walked away from a job with good pay and benefits, because without warning, it had become impossible for me to meet the demands of the position. At the time I was a mere thirty days from full health insurance coverage. I had no savings and I had no plan. But I believe there was a clear connection between job stress and the onset of full blown RA. Sure I had experienced some pain for several years---that mysteriously came and went from one joint to another. There were those unexplained fevers, swollen fingers and toes, eyes that felt as though they were full of sand. But not like this. My body was shutting down and I couldn't "walk it off" any longer. Perhaps I should be grateful that things unraveled as they did. I may have continued to limp from day to day on my twisted feet, icing my hands and wrists every night after work and taking leftover painkillers from the back of my medicine chest in an effort to take the edge off the pain and get just a few hours of sleep.
I consider myself fortunate. English is my first language, which made it relatively easy to search for low income health clinics on the internet and ask questions over the phone. I did not require a translator when I spoke to the NP---although one was provided for me without even asking. All I had to do was show up early in the morning, sign up, and take a number in the lottery. There were so many people in need at the clinic, the line spilled over from the lobby into the adjacent corridors. So many in fact, that there were more people than there were available appointments for that day. Mexican workers in construction gear, young mothers with dark eyed toddlers, elderly black men and women. All of us together waiting to be seen and treated for our respective injuries and illnesses. Some had to wait hours for appointments, others were sent away to another clinics or emergency rooms.  So many people in need, in the richest country in the world.
Two weeks ago, I spoke with a social worker at that clinic. She called to explain that because I was now receiving state-sanctioned insurance, I was no longer eligible to receive clinic services. She said that the clinic was overwhelmed with patients, and they were now forced to turn away anyone with even minimal insurance coverage. Of course I understood. It was the first opportunity I had in almost a year to thank her for the work that they are doing, and that I was grateful for the care that I had received from everyone there. She thanked me, saying "with all that is going on with the state of Wisconsin right now, we don't know how long we will be able to continue".
Thank god for community clinics. But they might not be around for much longer, if the Governor has his way. . I work, btw. I was working full time up until this past month, when the economy hit our industry particularly hard and my hours were cut back. I take my medications and follow my rheumatologist's advice, but like it or not, my disease is advancing. My employer does not offer any type of health insurance, and will not for the foreseeable future. There are no laws in WI mandating that employers offer any type of health benefits.
Something is very, very wrong with this picture.

Tuesday, March 29, 2011

In medias res

I took my first dose last Friday. That was four days ago if you're counting.
And yet today I still felt like a zombie, like my limbs were dying from the inside out and my brain had blown a fuse. Some of the lights are on, but nobody's home. And there are switches that won't work, muscles that don't flex, joints that ache and grow tight with fluid. This is day four of methotrexate. And this is me, slightly better than I was yesterday or the day before that.
"Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications" (Medline Plus webpage). No shit. It's a powerful anti-rheumatic drug that is used to treat aggressive diseases such as cancer, some forms of lupus, and rheumatoid arthritis. Toxic to the liver, the lungs, kidneys, reproductive organs. Causes hair loss, metallic taste in mouth, enlarged lymph nodes, nausea, vomiting, and diarrhea. I understand the risks and the laundry list of possible side effects. And still, I willingly put this substance in my body, all six evil little pills, once per week. I am doing this so that I can have some semblance of a life worth living for a while longer.
One year ago, I was in a different place. I had just landed my dream job with one of the most prominent landscape firms in the state, a generous salary and benefit package, with a company vehicle, a new house. After several difficult post-college years, things seemed like they were looking up. The future abundant with possibilities. Six weeks into it, I began to have pain in my hands and feet.
Working sixty hours a week is hard on the body. I thought that I would get used to it. Seven weeks into the job, I was driving home at night with my hands twisted into claws. They would flex closed and no amount of will or strength could force them open. I couldn't hold my toothbrush, raise my hands to wash my hair, sleep, or put on socks. I took ibuprofen three or four at a time, four times a day. Nothing.

I walked away from the job.
And towards something I never expected. A body that betrays me daily. A brain fogged with toxic medications. A life that will probably never be the same.