I meet E.J. almost 5-6 years ago on another care related site and we have bonded through various site related blogs, chat rooms, week or monthly competitions, etc. I believe what I noticed about E.J. was her passion for photography and art as well as her outspoken attitude and not just her caregiving and passion. E.J. has approved for me to post her entire 18 year ordeal with chronic pain. Due to the time involved in this interview (personal story) I will be posting it over several days. This also provides time for those working on their questionnaires or story to get them in to me. This is not a way to get you to rush, I want you all to be comfortable with the stories before their posted.
Following is E.J. story in her words and her writing, nothing has been left out. Now here is the look into E.J’s Chronic Pain.
The Pot of Painlessness at the End of the Rainbow, Part 1:
“Based on the information you have provided, we are removing the [medical exclusion] rider for ‘the female internal genital organs’ from your contract effective August 01, 2005. We recommend that you retain a copy of this letter with your policy for future reference.”
I stood in the post office yesterday, holding the letter from my insurance carrier’s underwriting department and letting deep satisfaction wash over me, down to my toes. If I wasn’t careful I would cry with relief….
Warning: What follows is medically and biologically explicit.
I had gone on the Pill after 18 years of debilitating menstrual cramps and bleeding that in the end had gone from one week in duration to two weeks and then to three. The Pill gave me my life back but at the cost of secondary problems — leading my new health insurance carrier to include an exclusionary rider in my contract that denied any coverage to my reproductive organs. After two years treatment-free, I could ask that the rider be removed.
I had switched health care providers when I moved down from Boston. I was no longer working multiple shifts. With clearance from my doctor I discontinued taking the Pill, filling and setting aside four months of refills in case I was driven back to it.
Miraculously, I experienced less pain, not more. Perimenopause could be one reason, but I believe the major factor was the nosedive my stress level had taken. Muscles relaxed that I hadn’t known existed, let alone realized they had been tensed, perhaps for all of my conscious life. After two years treatment-free, and with letters from doctors, I petitioned to have the rider removed, and yesterday received the good news.
My journal entries from before the Pill report on pain. They try to verbalize the experience, form a philosophy, seek and offer comfort. Agony, like its less troubling and often jubilant siblings, is offered a seat at the narrative table. Dealing with it becomes its own journey, with its own enlightenment’s.
“I never knew what day I’d get my period,” my mother once told me, “but it always came between the same two subway stops in Queens.”
She had lived in the Bronx and gone to Brooklyn College. By the time she was in Queens it was too late to turn back. She’d had no choice but to complete the trip, lie down in the infirmary, rip a set of sheets to shreds, throw up, and fall asleep. When she awoke it was time to go home.
I envied her because she could fall asleep after she threw up.
I was 15 years old when I saw gynecologist #1, who told me, “Get married and have plenty of children, and make sure you do it in that order.”
In college I was prescribed Darvocet. I took it for exactly three days. The first day it seemed to work. The second day it failed miserably, which led me to medicate myself during the night as well as during the day. The third day I was high but in considerable pain, and I stopped taking the pills cold-turkey. The third night I was a physical and emotional mess, and realized that after only three days I was suffering withdrawal symptoms. I never touched the stuff again. Years later, when I indicated an “allergy” to Darvocet and explained why, the doctor marked “drug addiction” on my form.
I was anorexic the year I entered college. I had dropped 55 pounds in 5-1/2 months, did not menstruate for 4. Being cramp-free was paradise, but when my periods started again the cramps returned immediately, full-tilt.
Gynecologist #2 prescribed Zomax. It was the only medicine that worked more often than not. I told her, “Please give me a prescription for as many of these as you can.” If it helped me I knew, instinctually, that it would be taken off the market.
Three months later it was, after five women had died. Gynecologist #2 begged me not to fill the prescription. But I was leaving my marriage and I had to support myself. I filled the Rx for 100 pills, which lasted me for several years, after which my condition worsened significantly. But I could work. Far from killing me, the Zomax had helped to save my life.