I got home from work today to find yet another trademark double window white business envelope with a return address reading "so and so Medical Services, Inc." These envelopes make me nervous. Just when I think I've paid down or set up installment plans for all of my medical debt, another envelope arrives, asking for $318.60 ("but we'll accept $223 if you pay in full today!") for some laboratory/medical service that my insurance didn't pay in full. I can call the number listed to settle the debt or arrange a payment plan, but only until 6 P.M. Eastern Standard Time. I look at the clock. It's 6 P.M. Central Time, which is about the time I get home from work every single day, if the trains run on time and the weather isn't awful.
I think to myself, "Of course." I'll either have to call from work, keeping my voice low so that the colleagues in my neighboring cubes don't hear me calling a debt collector, or sneak out into the frigid January air during my lunch break, juggling my cell phone in one hand, and the invoice and my credit cards in the other. All because of my ovaries.
I've posted in comments before about my endometriosis, which the National Women's Health Information Center defines as:
Endometriosis is a common health problem in women. It gets its name from the word endometrium, the tissue that lines the uterus (womb). In women with this problem, tissue that looks and acts like the lining of the uterus grows outside of the uterus in other areas. These areas can be called growths, tumors, implants, lesions, or nodules.
Okay, doesn't sound THAT bad, right? Until you hear the symptoms, described here by the National Institute of Health & Human Development (Squeamish men may want to skip down a few lines):
Symptoms can include:
- Pain before or after menstrual periods, as well as during or after sex
- Lower back, intestinal, or pelvic pain
- Heavy menstrual periods, or spotting and bleeding between periods
- Painful bowel movements or painful urination during menstrual periods
- Infertility - About 30 percent to 40 percent of women with endometriosis are infertile, making it one of the top three causes for female infertility
Okay, so that kind of sucks, right? Well, also according to the NICHD:
There is currently no cure for endometriosis.
So in a nutshell, welcome to my relationship with my reproductive health. At the age of 16, I was diagnosed with ovarian cysts when my mother rushed me to the ER, suspecting I had appendicitis due to unbearable pelvic pain that made sitting upright, let alone standing, excrutiating. Imagine the feeling of someone drilling a screw into the sensitive tissue between your hip and your pelvic bone. That's what I compare my ovarian cyst pain to.
Pain meds and oral contraceptives were the remedy my then gynecologist prescribed. And so I stuck to that regimen through my junior year in college, when cramping so severe among other awful symptoms caused me to miss class after class, curled up in bed, popping Midol like candy and sobbing into my pillow. Two university gynecologists could not figure out what was wrong with me. So when I came home from school that summer, my mom found me a specialist at Rush Presbyterian in Chicago's medical district, and scheduled an appointment.
After taking blood and tests, the ob-gyn, a kind woman, good humored, and more passionate about women's health than any doctor I'd ever met, listened thoughtfully while I described my pain, the weight gain, the emotions, the frequent headaches and fevers. The pain, more severe than my ovarian cysts had ever been and spread out over a wider range of my pelvis, made my doctor suspect that endometriosis was the cause. I'd never heard the word, and neither had my mother. The only way to make a certain diagnosis of endometriosis is through a laparoscopic surgery, where a small camera is inserted through the naval so a doctor can actually photograph the microscopic endometrial tissue and determine how far it had spread.
I'd never had surgery on anything before. I was a few months away from my 21st birthday, and about to find out whether I had this disease I knew nothing about, or maybe something worse.
The surgery went successfully in so far as they were able to diagnose the endometriosis. Unfortunately, it had spread to my bladder, intestines, colon, ovaries, and a mass behind my tailbone, in addition to the trademark exterior of the uterus.
Then the costs began to escalate. My doctor, one of the top in Chicago and the country, had performed the surgery herself, and she was a specialist. As a college student, I was still on my father's health insurance plan, which took issue with the fact that I'd had an expert perform the surgery instead of a general surgeon. Thus, they agreed to pay only 1/3 of the bill. Then, my doctor wanted to start me on an agressive hormonal treatment to prevent the endometriosis from spreading further so that we could sort of deal with the problem at hand without letting it get worse. The treatment, a shot called Lupron, in 2003 cost $800 per shot, with one shot per month being necessary. My insurance outright refused to cover the Lupron, citing it as just an expensive form of birth control. My doctor tried desperately to get me free samples of the drug, but without success. She was left with no choice but to put me on a high dose oral contraceptive, combined with drugs to help relieve the pain from the endometriosis on my bladder and my intestines.
On my 21st birthday, I had one drink while my friends got wasted around me, wondering what the hell was wrong with me. I was shy around boys because I shuddered to think about what intimate relationships would be like. I gained weight from the hormones, and my skin broke out. I felt fat, ugly, and was still in pain, struggling with a part-time job, full-time school, graduation around the corner, and trying to keep some semblance of a social life together.
Even without the Lupron, the bills piled up. My dad agreed to pay off my surgery, but I didn't want to ask him to pay for my prescription co-pays, and worse yet, I was coming close to graduation and would soon need insurance of my own with an undoubtedly pre-existing (and chronic) condition. At that point, I don't think I'd even begun to worry about the possibility of being infertile.
And now I'm 25. I'm in a committed relationship with the man of my dreams, who rubs my feets when I'm cramping and listens to me explain the pain and the frustration and puts up with the moodiness. We want to get married and have a family, the old-fashioned way. And I can't help but wonder what is in store for us when that time comes. My friends conceive left and right with ease, sometimes accidentally, and I wonder how much fertility treatments will cost if I need that, and what the emotional toll will be.
I had to leave a job last year because the pain returned with such aggression that I spent days on my back wondering if things would ever end. My current boss is an incredibly understanding woman, and lets me work from home when my symptoms flare up. I know I'm so much luckier than many women with this disease, who hide it from their male bosses and are looked upon as being weak for calling out sick once a month.
I look at the bills as they come in, for MRIs, CAT scans, quarterly gynecologist exams (what most women refer to as their "annual"). I look at the receipts for my contraceptives ($30 a month, I'm now on a much lower dose than when I was 21, thank God), pain killers ranging from vicodin to ketorlac, prescription sleep aids for when the pain keeps me up, migraine meds and motion sickness pills for when the migraines (also caused by endometriosis) are so bad I throw up. Two new bills from two recent hospitalizations for migraines when I thought my skull was going to explode.
And I look at our three wonderful candidates for the Democratic nomination, with their spectacular health care plans that will no doubt make it more likely that my insurance (Blue Cross Blue Shield) will cover all four of my gynecologist appointments instead of just one. Or that maybe my medications will be a little cheaper.
But what will that do for the medical debt that I already have? Close to $3,000, some of which has gone to collections simply because I have other bills to pay too, normal people bills like electric and rent and cable because even though I have a disease, I like to catch America's Next Top Model every now and again, and is that such a crime?
I want to know how the next president, and how Congress, will help relieve me of some of this debt that I owe simply for being sick. And I don't have it nearly as bad as people with disabilities, cancer, diabetes... why must the sick, the people who already miss so many special moments in their lives, pay so much more than the people who are lucky enough to enjoy their days pain-free?
Something must be done. This is a great nation, but it is also a nation where the sick must choose between paying their rent or mortgage or buying medicine for their sick children. Where people wait until they are so sick they have to go to the E.R. and find out it's too late. We are a better country than this.
I don't want anyone feeling sorry for me. I'm active, otherwise healthy, and live a wonderful life despite the occasional serious pain. I am in love, I love my job, and I love that I feel well enough to do Pilates three times a week (easier on the pain than pounding cardio). But I do want to take advantage of my good fortune, and do what I can to make our elected officials, drug companies, and of course, the insurance companies and medical debt collectors realize that we are failing our sick. I have faith that we are better than the greedy corporate executives who profit from our illnesses, and by leaning on each other and working together toward change, I know we can make that message heard.
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EDIT: I am sorry this is so long, once I started writing I just couldn't stop!