My National Pain Awareness Month Interview with EJ

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.

Journal excerpts

1983-1984 (age 25)

10/26/83. Today my flow started. Began quite ordinarily, 32 days. Took a Zomax at 9 AM because I felt some discomfort, wanted to keep up my level of efficiency (cursed word!). All through the morning I had a new feeling: one of fullness, back pains rather than abdominal pains, and the feeling I had swallowed two lead cannonballs. As though gas and lead were pushing my stomach out, rather than a crowbar pressing it in.

Then, at 11:30, I began to get a build-up of my old pain, only 2-1/2 hours after I’d taken the Zomax, which only once before has “betrayed” me, and that was because I ate a spicy sandwich in a fit of stupidity. This time I’d only had half a cup of coffee and a plain croissant, just to have something in my stomach. I wasn’t at all hungry.

But the pain came; by 11:45 I excused myself for an early lunch, struggling to walk and pale and clammy with agony. I stumbled to Morgan, to the women’s lounge, and was hit with full waves of pain as I lay on the couch and moaned, cried, hyperventilated. The Zomax was doing nothing — after nine months of miracle from the drug, after six months of taking it after it had been taken off the shelves for killing five women. (What is the correlation between flirting with death/destruction and avoiding pain? I have seen death, have willed it to me, have decided living is much more in order and continued my life with the faith that when my time comes, it comes.)

Two women came in as I was vomiting into a garbage can reeking of cigarette butts, and escorted me to the health service in Cumnock. Am I a closet hobo, a closet derelict? In New York I could sit on the Ferry, in the Subway, and groan, doubled over in pain, grip the poles and straps blinking against the pain in half-crazed tunnel vision, and not feel as though I were out of place, as though such expression of pain was forbidden. Here in Boston I watch myself. The subways are clean, orderly, filled with God-fearing people, filled with Heritage, a confidence that schizophrenic New York lacks. Hit with waves of pain in the middle of Boston I would be a rip in that fabric of relative calm.

My cramp lasted 45 minutes. The nurse took my blood pressure: normal. I told her a brief history; she confirmed that indeed my problem was genuine. I mentioned that stress probably had a lot to do with it. That was difficult for me, because I have a problem admitting to the effects of stress, as though I am somehow above it. As though logic and control will do away with it.

And, of course, the waves of pain began to disappear as soon as I started getting attention, and that seems to be too good a coincidence to be ignored. I’ve certainly heard of more aesthetic attention-getters! But is there an aesthetic way to say I’m in pain, hold me, tell me it’s all right, tell me I’m all right, don’t lock me away, tell me I’m loved?

10/28/83. Staci and Matt gave me a lift home, after my second day of intense physical pain. Wednesday it was almost unbearable shock and confusion — had I mistreated myself that badly? Was I betraying my body, or was my body betraying me? Was the Zomax miracle over?

I decided today I was going to give in to my pain. I called the clinic, made an appointment.

Wednesday two women “carried” me; tonight Staci and Matt. Like my mother I joked through my pain; it still confuses me after 14 years and confuses me even more after 9 months of respite. I can admit to stress being a factor, to workaholism being a factor, when I drive myself too hard, when it stops being fun. I said to Staci, “This is one helluva way of getting attention,” and she laughed and said, “I know you’re not likethat.”

Sometimes I’m not sure; what makes the body feel pain? Especially since under normal conditions I set my receptors against pain, need more stimulation than average.

J tells me I’ve done so much in so short a time — home, home office, new job, new lover, writing, huge projects, now my health appointment — that I’ve neglected my emotions. Said, “It’s time to get the cobwebs out,” told me I should check out all three groups — rape, battered women, and child abuse support groups. “You can do a lot worse than that!” she told me. In any case, the readiness is there — making my doctor’s appointment was the shifting of one gear; now it’s time for me to shift another.

2/14/84. A very relaxing, forgotten dream last night — somewhere around my 2:45 AM cramp. Difficulty waking up this morning. Almost no work, so put together the Update index. Cramp set in at 11 — went to lie down at 11:50. Sixth Zomax of the month (4 days) at 12:15. Trouble rousing myself at 1. Lightheaded now (2:50 PM). Went to sleep last night at 8 PM.

2/15/84. Cramps occur more frequently now than before, accompanied by sensory changes (enhanced awareness; more sensitivity to light, touch). Ginger ale yesterday and today — took aspirin for cramps and headache; this is the fifth day of my period and my flow is minimal, but the pain is still there. Virtually all lights and bright colors come across as glaring. I feel as though I’ve been run ragged when in reality this has been a very slow day — one in which I’ve scanned issues of both Timeand Newsweek and also U.S. News and World Report.

2/17/84. After [karate] class, before I changed in the women’s room, I sat on the toilet and noticed I was shaking slightly. I felt very frightened and couldn’t exactly put my finger on why — a couple of tears rose in my eyes. I felt drained past the usual effects of the work-out.

As I sat on the train a black man opposite me, across the aisle, came over to me and asked if I was okay. I must have looked glazed-over. He was sitting almost double-jointedly, in an awkward position with his legs wrapped by each other, in which he looked perfectly comfortable. After he asked me if I was all right and sat back down, he got up again and had to say three times before I understood what he was saying: “I’ve been supporting a kid in Korea for three years. Do you think it’ll come back to me in this life?”

When I finally heard him I said, “Yes. Yes, I think so,” and he grinned and said, “I hope so!”

2/18/84. Pain pretty constant all day — the eighth day of my cycle and I’m still bleeding steadily. Just popped a Zomax, #7 for the month. I feel as though my body is killing me. I’m not used to this — not this prolonged pain, prolonged bleeding. Sensorially everything is too bright, especially at a science fiction convention where people are naturally hyper.

2/21/84. Bleeding for the 11th day now, diarrhea last night and Sunday night. The physical ailments are the only things that mar my experiences now — I have relaxed into contentment, a oneness with the universe, meditative joy. More tolerant of confusion.

4/12/84. Last night Karen accompanied me to Memorial Hall, where I had psyched myself up to give blood for the first time. As I was talking about it in the morning, my left arm went numb. Psychosomatics, I thought; my body likes to throw temper tantrums.

The hall was filled with jelly beans and juice, sign-up tables, temperature and blood pressure tables, folding chairs, and M*A*S*H-type tables where people lay to give blood. Karen was very warm, almost fainted from the heat, but I felt comfortable. Then I learned my own nervousness had raised my temperature to 99.4 — the upper limit of accepting donors is 99.5.

At the next station, responding to the transfusions I’d had when I washospitalized, the nurse asked if I would give an extra vial, since the transfusions meant I had built up valuable antibodies in my blood. I said I would.

It was when she asked me if I’d had any fainting spells or convulsions that my dysmenorrheic history came into play — and the reactions I had while menstruating in the months following my laparoscopy. Because I do convulse and ultimately pass out from pain and muscular dysfunction, I was rejected as a donor. I was told that only after a full year without symptoms should I try to donate again.

(My Aunt S, years ago: “Oh, I’m sure the pain is just your imagination.”)

8/30/84. This morning I awoke with cramps and knew I’d be late to work. I took a Zomax and collapsed on the couch — then, when I had enough strength, crawled upstairs and collapsed much more convincingly on the bed.

By 8:30 I was well — it always fascinates me how the pain vanishes, and — unless it’s a whopper that stays for six hours and departs leaving sore muscles — usually doesn’t leave a trace.

8/31/84. Cramps from 3:10-5:30 AM (after getting to bed about midnight). Today I dragged myself to work and hover between listlessness and bursts of adrenalin to keep my senses working.

Before I’d gone to sleep — feeling exhausted but otherwise fine — I thought, “Amazing. No pain. I feel as if it’s all over, can’t even remember what it felt like.” Like labor, I suppose. So when I rolled awake at 3:10 and felt the suddenly familiar pain and its build-up I tried to verbalize to myself just what happens.

My first reaction is in the legs and arms. To give in to tension in my lower abdomen causes sharp, excruciating pain; the initial stages have me pointing my toes and flaring them as well — otherwise my thighs tense — and they become disabled soon enough. I start with the extremities to distract me from the pain, almost like ferrying muscle spasms away from the center.

My fingers interlock,and twist. Or my hands hold onto each other, palms pushing together in an isometric fashion. At times I stretch myself and pull, rack-style, to concentrate on the arms and legs rather than on the abdomen.

This is a useful, but temporary, way to alleviate the pain. Soon enough my leg muscles in particular, and thighs especially, become fatigued and begin to hurt. I relax them — and the pain in my abdomen leaps up to full intensity. I find something to do with my hands — in last night’s case, focusing on the peeling skin from my sunburn gotten at Crane’s Beach. Usually I dig my nails into my flesh, or scratch it, or give it a hard rub, to focus my attention away from the pain.

In later stages my body twists and turns as a whole, when my small muscular groups have been strained to capacity. (If the pain gets bad enough I go into convulsions here; fortunately this didn’t happen last night.) My legs become rigid and sometimes jerk at odd angles, to try to “divert” feeling into muscles as yet un-strained.

The cramps occur in waves that don’t always decline to base level. There are times when there is severe pain but it is held constant. I lie perfectly still (any movement sets off spasms), nauseous, and mentally retreat from the pain. My face, creased during spasms, is perfectly smooth — except for the taut muscles in my abdomen my body is completely relaxed — until the spasms begin again.

During the spasms my breathing is hard. I push, the way I imagine a woman does in labor — tightening the stomach muscles as I push my diaphragm up. Somewhere in the pain process, there is a switch: from diverting muscular tension to extremities, to premeditated pushing at the source of pain in an attempt to vanquish it by using its own power.

When hard breathing no longer sufficies I moan. It is a low, guttural moan — my adenoids draw up and I push from the diaphragm — almost in true singer’s form, but much more ragged (though the harder I push the moan at times, the “purer” the tone). When my throat is this open I often feel the need to yawn, and the rush of oxygen and blood to my brain provides quick but brief relief from the pain.

When the waves are such that I have brief respite — no pain at all — my mind is blank. All I am aware of half-consciously is letting that lack of pain course through me. When the spasms return I am quickly brought back to consciousness in which, in less excruciating stages, I “negotiate” with the pain. In more excruciating stages, I do battle with it.

In these more excruciating stages — which I did not experience last night but which have the potential to arise — the convulsions occur. I lose control of my voice — as my entire body tenses, my moan rises to a high pitch and finally to a thin scream. At such stages I plead to the pain, to the higher powers, and alternately react to the pain with undiminished rage. (How dare it treat me like this!)

As the spasms decrease and the respites lengthen I lose consciousness. I am able to dimly sense when the pain seems to have stopped for good, and the feeling is one of utmost serenity.


 

Once again, Thank you all for your stories and the time you’ve put into them.  A special Thank You to E.J. for allowing me to use her amazing story of suffering, trials, tribulations and pain.

Thank you,

Richard K.

iCareConsulting@att.net

%d bloggers like this: