Friday, March 20, 2009

A History of Me

None of you want me to start out with birth, obviously. Let's face it, most people are only really intersting to themselves. Still, I want my story to be in context, so I guess I should begin with some things about me, so you understand, and then my story mightmake some kind of sense.

I have learned in life that people tend to discount another's pain. In part, of course, because we cannot feel another person's pain. Additionally, I think that we are conditioned as we mature to "shake it off," by parents, peers and others. This is part of growing up. Everyone can think of a toddler or small child who has fallen down and scraped a knee. Though the injury is temporarily painful, all of us know it is not serious, and learning a bit of stoicism for life's smaller hurts is a beneficial and good thing.

When I was in high school, I broke my hand warming up for a volleyball game. Though I was regularly encouraged to shake it off and re-enter the game, the stars I saw every time my hand made contact with the ball made me decline. Since the coach assured my mother that I was fine, I didn't even see a doctor for it for another four days, when my father finally saw it and was very concerned (it was mishapen, discolored and swollen, even days later).

Later in life, I developed tendonitis in both wrists. I was working as an administrative assistant for a small but lucrative real estate practice. When I told the owner that my doctor had recommended ergonomic changes (this was before it was so commonplace), the owner told me that he would do no such thing, and if he so much as heard the words "tendonitis" or "carpal tunnel" ever leave my lips again I would be fired on the spot. I never mentioned the problem again, finally changing jobs a little over a year later. However, by the time I was in a position to request ergonomic changes, permanent damage had occurred. I was diagnosed with bilateral carpal tunnel a few years later, and have given myself high blood pressure from living on ibuprofen for so long.

I've learned to ignore and live with pain. I honestly was doing that with the various pelvic pain symptoms I had. The symptoms started to be bad enough to make me physically ill during my cycles several years ago. When I brought this worrisome change up to my doctors during annual exams, I was assured that it was just PMS, and they offered me an anti-depressant. Since my biggest complaint was pain that made me physically ill, I declined, and just mixed flexeril, ibuprofen and tylenol on the days when it would make me sick, and lie down for about twenty minutes until the worst of the symptoms passed as the pain medications and muscle relaxants took effect.

Last fall the pain became more insistent, and wasn't letting up. One of my first complaints, aside from the pain, was intermittent constipation. We went for a colonoscopy first, which found a pre-cancerous polyp and removed. It didn't account for the constipation or the pain. By then it was running my life, and great amounts of time were spent resting on the couch, because the pain was regularly making me sick (daily). At times I wouldn't be able to eat dinner after making it, because I would have to lie down to recover.

My fiance went to the doctor with me, and voiced his own concerns. The doctor gave me a regular prescription for pain medication and suggested a gynecologist. I didn't like the first one, and ended up getting a second opinion, and finally was scheduled for a laparoscopy and cystoscopy earlier this March.

While I've been sick one of the things I've struggled most with is the worry that "this is all in my head." For one, I have learned in life to ignore pain and push through it, and have been doing that for years. Having my pain get to a point where I couldn't ignore it has been very distressing for me. Worse, since it isn't getting better, like most pain does over time, I really began to wonder what was causing it. It was making me so sick and so weak that my fiance, a nurse, was beginning to be very frightened it was cancer. That possibility made us postpone our wedding indefinitely while we searched for a diagnosis. It would have been unfair to marry him, discover I was terminally ill, and leave him responsible for hundreds of thousands of dollars in medical expenses, especially if I didn't beat it. Constantly I vascillated between both possibilities - the disease would kill me, or the disease wasn't real.

Finally, when scheduling me for the laparoscopy, the gynecologist suggested that it was either adenomyosis or interstitial cystitis, both of which, he assured me, were incredibly painful diseases. Adenomyosis would be cured by a hysterectomy (something I actually welcomed at forty), and interstitial cystitis had no cure, but some treatments that improved symptoms.

When I got home from the appointment, I went online (Google is my friend) and searched for information on interstitial cystitis. When I began to research regular treatments, and saw that most included an anti-depressant and counseling to learn to cope with the pain, I honestly said, "I'd rather have cancer." Facing an illness where many doctors really do not care to treat the pain, even when the pain has been proven to be as bad as end stage cancer, and knowing that the illness is chronic, debilitating and currently incurable, seemed overwhelming. I told friends and family, "Pray for adenomyosis." I know I did, frequently, repeatedly.

As the pain continued to grow, and I weighed possible diagnoses, I would cry when I would picture a life with pain like I was enduring and envision nothing but regular strength tylenol to allow me to cope. I'm not going to pretend to be brave or noble. Nothing crushed my spirit more than having pain that was so severe I could no longer clean my own house or make dinner for my family. Facing that pain for a lifetime was enough to make me consider ending my life. I remembered my assurances to my father when he was diagnosed with SCA - that we valued him for who he was, not what he could do. In the end, when we lost him to cancer, I was relieved for him, because he was allowed to die before he was so disabled he was miserable. It was a blessing for him, even though it was a loss for us.

Finally, when I pondered an illness which could possibly leave me miserable forever, I truly understood how hard things had to be for my father.

1 comment:

  1. This is heartbreaking. I know how pain can wear you down and how depressing it can be to contemplate a lifetime of it. Sending you hugs and prayers. I wish I could also send you a cure.