This is a post I’ve been meaning to write for a long time. Having been through a somewhat hectic week, and feeling rather strung out by recent pain levels, I thought I’d try to jot down some of my thoughts in a more experiential post, and at a later time, explore the topic with some research.
First, I have to apologize for abandoning my attempt at daily blogging, or rather, offer an explanation as to why it didn’t work for me, and likely wouldn’t work for most people in chronic pain, especially those who are still able to work in some capacity to make a living. The quick answer is, there isn’t quite enough room in the chronic illness time-space continuum for such a commitment. My part-time work had kept me entirely engaged until mid-February, and despite carving out the time for my blog, I eventually crashed into the hard limits of Sjogren’s and the whole work-sleep-repeat cycle wasn’t terribly sustainable, nor conducive for accessing the energy required to pursue creative endeavours. That, and the pain flare up that had me visit the ER for the usual scrabbling in the dark, and the experience of a pain med that rather than offer relief, cast me into a deeper depression for a few days.
In the middle of one of those sleepless and dark nights, I stumbled upon the spark of an ebook that I wanted to write, about sensitivity and its relationship to depression and chronic pain. As I began to exercise research skills long neglected from my abandoned grad school days, I found myself getting excited about the topic and began writing the early review chapters of the book. I use the word ‘chapters’ advisedly, as it’s a long time since I’ve granted myself real time to dedicate to a writing project, and I knew it would be better to commit to something shorter upon which I could elaborate later (much like this post). Even since that early success and enthusiasm, I’ve had a difficult stretch meeting life’s commitments, much less spend time writing, which only confirms my wisdom in taking a graduated approach to what I feel is embarking on my true life’s work.
Last month, I reached the one-year anniversary of the nagging chronic pain in my kidney region. I also use this vague phrase advisedly, and will elaborate later in this post. I celebrated this milestone with a trip to the ER in response to the urging of my concerned wife and naturopath. Both were keen to see a scan done and perhaps more testing, to try to figure out what this pain was about.
I am no stranger to pain. Around my 17th year, I developed crippling pelvic cramps with my period: the kind that left me doubled over for a good hour or two at a time. Back then, I wasn’t able to easily swallow pills, so I dealt with all those episodes without pain medication. Some 5 years later I started on the contraceptive pill, and I suspect this only aggravated my body’s natural disposition to forming cysts. Within a couple of years, the acute food poisoning/giardia episode that triggered my autoimmune disease had me scrambling to different specialists to scan my body and map the source of the terrible abdominal pain that plagued me for 8 months. During one such scan, the first large (7cm) ovarian cyst was discovered.
As part of my journey, that cyst was drained (I discovered later, a rather useless procedure) in 1996. Around that time, the crippling pelvic pains took on a life of their own. I discovered quickly that heat helped, and I often spent a lot of time curled on the floor of my bedroom or the shower, applying heat for the hour or two it took for each ‘burster’ to pass.
Over the years, I began to develop terrible joint pain in addition to the muscle pain I already endured (which I think is part of the body’s natural reaction of ‘tensing’ in response to pain). This pain was attributed by my rheumatologist at the time to the drying effects of Sjogren’s, which had manifested in all sorts of ways: dental decay, chronic sinus and throat infections, bronchitis and pneumonia.
All along, I had the not-so-subtle sense that the medical industry thought I was somehow making this pain up. I became used to being discounted and disbelieved, often suffering in silence, especially in those years I lived alone with no way of taking myself to a hospital, even if I’d wanted to. When you’re on the floor, it’s hard to even think about dialling 000 (the Australian equivalent of 911).
In 2003, a benign mass was removed with my right ovary. Five years later, as my other ovary shattered, I experienced the true depths of pain. Later that day in the hospital, as the surgeon removed what was left in an emergency hysterectomy, she discovered what my intuition had always known: I was bleeding internally, and had been for some years: every time one of those cysts burst. The surgeon cleaned up the mess in my pelvic cavity, and later told my wife that I was a brave woman to have lived with the pain I’d obviously been experiencing.
Brave. That’s a nice word to hear after so many unacknowledged years of suffering.
However, now I’m back to square one with this past year of ‘kidney’ pain. Over the years, I became quite used to bladder infections that sometimes had kidney involvement, and with the help of a former naturopath, had some effective ways of treating it. I think these infections lay squarely within the realms of Sjogren’s syndrome and, after so many years, didn’t particularly worry me. So when my kidney started having episodes of pain last February, I didn’t think a lot about it and used the usual herbal, ‘Yellow Dock’, to remedy it.
However, the episodes kept coming. There were periods of acute, stabbing and then dull pain, and sometimes nausea. The doctor looked for infection, but didn’t find any, and that was that. There was a tiny bit of blood in the urine, but she wasn’t particularly worried about this. By June, the pain had settled into a dull, chronic pain, and didn’t go away. Again, the blood and urine tests didn’t show a lot to worry about, but I asked to see my internist. He sent me to another internist, who reportedly had greater knowledge of the kidney. By about September, I got to see the internist. I told him my history, he asked about my eating, drinking, smoking and exercise habits. He was concerned I think about my lack of exercise. I know it concerned me. I have generally been able to keep a basic yoga practice going, and some walking, but by the time I saw him, most of that had dwindled due to pain issues.
Exercise is difficult with even mild to moderate chronic pain. I don’t know that doctors make that connection. I remember in my early twenties, dealing with yet another gum infection, the dentist prescribed me a stronger painkiller (likely a Panadol Forte – like a Tylenol 1 with codeine), saying that I couldn’t hope to garner the resources to work on feeling better until the pain (which included severe headaches) receded sufficiently. I could have hugged her. It’s a lesson that a lot of doctors could learn.
Yes, there are a lot of people seeking the escape of a drug-mediated release. It seems increasingly common in our society, and I think it says more about the psychic burden of living in our times than it does necessarily about the perceived weakness or moral decreptitude of those seekers.
However, for some of us, pain medication is just the promise of a brief easing of, or respite from, the never-ending, mind/body/soul-destroying crush of constant, unrelenting pain. This ‘kidney’ pain wasn’t too bad on the scale of things, hovering around a 4-6 out of 10, with the occasional excursion to 8 or 9. I knew what a ’10’ was, thanks to my emergency back in 2008. Yes, the pain wasn’t too bad. Yes, others have it much worse. But on the top of all the other little (and not so little) chronic pains, in my experience of the world, it felt like the proverbial straw that broke the camel’s back. I wanted to do something about it.
The new internist advised me that I needed to drink LOTS of water. I needed to pee 2 or 3 litres a day to have a healthy kidney. I needed to avoid chocolate and green leafy vegetables. He didn’t even tell me why. I learned later that he must have been thinking of a kidney stone undetectable by ultrasound, X-ray, or CT scan, all of which I’d had by then. He told me that the CT scan looked okay – never quantifying what okay was – perhaps sure that I was a hypochondriac seeking more attention (I’m not sure who enjoys negative attention, but it’s not me), drugs, or something else. He told me that I didn’t have a tumour or an aneurysm, so I should be relieved. Somehow, I wasn’t. He told me that after a month, if the pain persisted, I should return. I drank the water (I don’t know if I was peeing 2 or 3 litres, but it was a lot by my regular standards). I drank bottle after bottle of pure blueberry juice.
The pain persisted, but I didn’t return. Why? Mostly, because I knew that the specialist, like my GP, thought I was making a big deal about nothing. Blood in your urine? If you can’t see it, then it’s no big deal. Evidence in blood or urine tests? Flagged abnormal, but not in the range that shows kidney damage occurring, then it’s no big deal.
What have I learned about the medical industry’s response to chronic pain? It’s a pain, literally. When I saw my doctor last week for the results of the latest unremarkable ultrasound, I could see it in her face: a kind of ‘what do you expect me to do?’ expression of incredulity. She even said (in medicine’s defence) that some people expect to go to specialists and find an answer to their problems (This, even as she set up other referrals for me, that I’m not sure I should take). Not me, doctor. This isn’t my first rodeo.
I’ve been living with pain since 1990. That’s nearly 22 years, which kind of shocks me to put that number out there. You see, I’ve gotten used to minimizing my own experiences, dismissing them, following medicine’s party line that I should not be feeling what I feel.
In 2008, a surgeon cut me open, and even with her vast experience, my body surprised her. Brave: she said I was brave.
Yet here I am again in 2012, thinking that I’m making too much of this. My naturopath tells me there should be more to life than this. I’d like to believe her, but medicine has told me that I’m expecting too much. Everything I experience and feel is not significant, and I’m causing them trouble, trying to find an explanation for it. I’m sure my GP would be happy if I didn’t bother her anymore. Same goes for those specialists. I’m not denying the heavy workloads under which they operate – weighed down by the proliferation of chronic pain sydnromes out there, which are surely symptomatic of the stresses of our times.
However, to tell all those people that their pain is only significant if it’s acute, if one day, an organ or body part shatters, then what we are saying is we can only deal with catastrophes. With diagnostic medicine at its most advanced, we can scan almost anything in the body in great detail, and if we can’t see it, our healers are telling us that we can’t believe it.
The doctor presses the spot near my right kidney on my body and I jump. Due to my pain syndromes, she could get that response anywhere. She now rethinks her diagnosis. Perhaps a torn muscle, a fractured bone? I ask if those cause blood in the urine. No. She reconsiders, that the blood, insignificant as it is, must be a coincidence, a presentation of some other problem. The pain is in the muscle layers above the kidney, she tells me, and is most likely not in the kidney. She thinks I should take Lyrica, now quite well-known as a fibromyalgia drug.
I should digress briefly to say that I know what body-mind stress-induced muscle pain is like. I experienced a chronic painful one in 2010 that likewise sent me to the ER, but resolved only with the intervention of a gifted counsellor. This pain is not like that, but the doctor has introduced doubt in my mind. Have I fussed too much? Made too big a deal of something that really isn’t anything? Even if a part of my mind tells me that a torn muscle or even a bone fracture would heal in a year, I defer logic to her training.
So, I’ll wait, hoping that with the help of the naturopath I can resolve this chronic pain, without the need for the catastrophic medicine I required in those small morning hours in 2008.