This is Part VIII of a multi-part essay about my own personal experience with osteoporosis. I will be taking you through the diagnostic and treatment phases of my care in hopes that it provides you a better understanding of osteoporosis in general, and pearls that you can use to better your own bone health.
"So the relationship of each moment in the whole of all the
others is implied by its total content: the way in which it "holds"
all the others enfolded within it."
David Bohm, Wholeness and the Implicate Order
My constitution was fire, according to the acupuncturist. Looking back over my life and the intensity with which I approached things...well, I could relate to that assessment. But the smell of being "scorched"...that was just embarrassing...
Bone has three main functions: it supports the frame, protects organs from hard knocks, and acts as a reservoir for energy (fat) and minerals. I had a hunch that it was the last that would hold the most clues to the cause of my osteoporosis, especially since the biopsy showed that my bones were gaunt, with thin, disconnected trabeculae. They looked totally spent—scorched from years of, well, that was the question. Years of what? Malabsorption of nutrients? But the doctor had said I didn't have any absorption issues. Could it have been all those years of training in athletics? With my eyes focused on making the US Olympic Team since I was 13 years old, I had certainly stressed my body to the core. Had it been all those years of stressing my adrenal glands, stressing the overall functions of my body, that had sucked the energy out of me. Could those years have sucked the reserve function right out of my bones? There are lots of athletes who train hard for years and years and don't end up with osteoporosis. So that, at least by itself, wouldn't make sense either. But there was no denying, from the biopsy, it certainly looked like my bones had given just about all that they could give. And now, at the age of 45, all that was left was just empty chambers. And it looked as if they had been running on empty for quite some time.
The endocrinologist had ordered over 30 lab tests but everything was coming up normal, or at least that was his interpretation. At first I just went along with what he said; after all, his expertise on the subject was obviously considerably greater than mine. But, by a year into this mess (of being diagnosed with osteoporosis) my understanding of the technical aspects of bone loss improved and I began to look back over the lab tests more closely. While they were mostly pretty good, I noticed that some of the results were just a little off, just a little out of the normal reference range. I began to wonder, could these have meaning, as they relate to osteoporosis, that the doctor may not have understood?
Doctors focus on body parts and body fluids to help them understand a disease. But it's really impossible to understand everything...every slight variance in lab test and every "minor" symptom a patient presents with. And even if a doctor did understand these variances, would they try to put all those bits of information together, like pieces of a puzzle, in an effort to understand the patient as a "whole?" For example, I had told my endocrinologist that my skin was sometimes extremely sensitive, at times I was irritable (for me that was really unusual), and my stomach often hurt after long intense runs. I had also told him that I sometimes felt a slight overall body weakness. I couldn't really describe some of these feelings very well and I guess my ability to compete on a high level in road races and triathlons put him at ease that these vague symptoms weren't from something terrible brewing. In fact, he didn't seem to be interested in any of these symptoms, and as for the slightly-off lab work, that was quickly tossed aside.
After my biopsy, several months passed when I thought things might be better, but then I sustained several more rib fractures from very minor traumas. I was getting frustrated. I didn't see any progress in the investigation and now I was breaking again. We didn't seem to be any closer to finding answers to why I had osteoporosis than we were at the beginning. With each visit to UConn there was just a repeat of all the lab tests that had already be done...nothing new and no focus on what lead to follow next. In fact, there just didn't seem to be any leads at all. The only thing that was happening was just a reiteration that I needed to take a bisphosphonate medication which I did not want to do.
With my greater understanding of osteoporosis and my closer look at the lab work (especially those results that were just outside of the normal reference range), I noticed some interesting connections. The "normal" comprehensive metabolic profile (CMP) for example, showed an elevated level of bilirubin, a breakdown product of red blood cells.
My hunch was that each of my symptoms and the "slightly off" lab tests could have some significance. Each of these might hold clues to understanding the "whole" of me, or at least to the source of my severe bone loss. I felt that implicate* within each symptom, within each slightly-off lab test, there could be some view of the whole answer. Like cells that each hold the same DNA map of the complete organism within them, my symptoms had implicate within them the wholeness of my body's dysfunction. In other words, the biology of each symptom was part of the biology of the disease, which was part of the biology of my whole body's functioning. Each symptom was significant to some extent or another. But like DNA, which is nothing without the cell that cradles it, each symptom and slightly off lab test by itself had no meaning. Even the low bone density (bone quantity) meant little without a vision of the whole structure: what my risks for fractures were, what my bone quality was, what my muscle strength was, and how my organs were functioning. Everything had to be, or at least should be, looked at together.
In addition to the high calcium in my urine and the elevated N-telopeptide indicating a high rate of bone loss, I was now aware of this elevated level of bilirubin in my blood. Could this have meaning? When I thought back to the first weeks after my diagnosis, I now remembered that the endocrinologist had said that I had a mild disorder called Gilbert's Syndrome. In retrospect I saw that he was referring to this elevated bilirubin. But I also remembered that he said it didn't have any bearing on my osteoporosis and we had both quickly dismissed it.
Now, a year later, the elevated bilirubin** and my renewed interest in a possible malabsorption issue prompted me to run some lab tests on my own. One of these tests was for fatty acids and the results were startling. I was extremely low in polyunsaturated fatty acids. I didn't understand it, how could I be deficient in these? My diet included oils such as corn and safflower; I ate peanuts and fish and lots of other foods that contain high amounts of essential fatty acids. They were in my diet...but maybe I wasn't absorbing them? The endocrinologist said there was no connection in this either. But I started to think that maybe the fatty acid deficiency was somehow keeping the inflammation going on in my hip. After-all the hip was still hurting, a year now since the hip pain first began and since I had initially been diagnosed with osteoporosis.
Could the low blood polyunsaturated fatty acids and the Gilbert's Syndrome have something to do with the lingering hip pain—or the osteoporosis—or both! Maybe, I was beginning to see what could be the head of a faint trail. All of a sudden it felt as though I had stepped into nature's complex biochemical laboratory where life's continual transformations are fueled and formed. I began to understand chains of biochemical interactions that I never knew existed, and these chains, like strands in a spider web, were being woven by all the biochemical influences of every organ system in the body. The biochemical trails through this web were confusing and seemed infinite.
In an effort to uncover more strands to this yet completed web, I began to think back to the days in high school and college where I had so much abdominal pain after runs that I had to curl up on the floor and wait for the pain to go away. And then I remembered that this pain, although not as frequent or intense, but there none-the-less, sometimes occurred into my 30s...and, into my 40s. Not all the time, but just after hard runs I would sometimes have intense abdominal pains. It had actually just become part of me and I really didn't think about it any more. But now, reading about Gilbert's—nausea, abdominal pain, weakness—especially after the stress of intense exercise and dehydration...well, now things were starting to make sense. The web was starting to take shape.
There are things we can only learn about an organism by taking
it apart—but to understand that organism we must fully engage
with it as a dynamic, interconnected whole. It is no wonder that
different parts of the body—the skin, joints, spine, organs—may
all be affected by a disease process even when they have no
obvious or direct physical, chemical, or neurological
connection with each other or the process itself.
* "Implicate" (order) is a term developed by David Bohm, a theoretical physicist, who developed a mathematical and physical theory that explored the concept that everything is connected.
** (For more on bilirubin and osteoporosis visit my blog.)
