In totally honesty, what fame there may be from being part of such a small and unusual medical minority is minimal. No important medical reference is likely to list my actual name or even a quick sketch of my actual case. However, my assumed diagnosis most definitely sets me apart from the main herd.
In this blessed respect I am truly and delightfully unique. As a kid being unique all I wanted. Like so many children at some point in their childhood, I’d convinced myself I was special. However, this kind of special is not exactly what I had in mind. But for the past twenty years this is the unique that I have.
The isolation I felt back then as a member of such a miniscule patient care group was magnified with a failure to be able to connect with a more informed medical community, a peer group to share with, and teamwork philosophy between agencies and organizations with respect to breast cancer, ovarian cancer, etc.
This is because for practical purposes none existed. If any focus had been given, it was directed primarily at elderly women, with whom at the time this condition was generally associated. One option, perusing the pages of actual medical studies and journals at the University of Washington Library was available, should I be able to interpret what was in them.
"OSTEOPORATIC fractures lower a patient’s quality of life and is responsible for more than 1.5 million fractures annually, including:over 300,000 hip fractures; and approximately 700,000 vertebral fractures; 250,000 wrist fractures; and 300,000 fractures at other sites."
- National Osteoporosis Foundation
Interestingly enough, I recall that my doctors were not comfortable at the time my fractures presented themselves to write in the blank space provided for a diagnosis because they lacked the necessary data to definitively state that the fractures I had suffered were positively associated with my pregnancy, so this section was left empty.
The medical care folks and I have generally proceeded since then to behave as if I am a person who has the kind of osteoporosis associated with pregnancy, but the certainty they would hope to have to write some actual words down is not there, so officially – technically I don’t even have a diagnosis.
I've been living since in this state of ambiguity. It’s one of those weird places to be, which is why a quick visit before writing this blog with some friendly folks at the website MedicineNet.com – “We bring the doctors' knowledge to you” for a general definition for the word “diagnosis” was a nice refresher for me.
MedcineNet.com says that in it’s original Greek; the word for diagnosis was used to suggest “a discrimination, a discerning between two possibilities.”
It appears that in more current times the usage of the word has been defined more tightly. The website states now diagnosis is “the nature of a disease: the identification of an illness.” Skimming this material, an old light bulb in my head goes off. This sheds a lamp once more on the reasons why the space where the official diagnosis would be written remains blank to this very day
"WOMEN can lose up to 20 percent of their bone mass in the five to seven years following menopause, making them more susceptible to osteoporosis. Specialized tests called bone mineral density (BMD) tests can measure bone density in various sites of the body."
- National Osteoporosis Foundation
Once my bone calcium decline was stable, I was basically sent home with the instructions to take calcium supplements such as the kind included in over-the-counter antacids, engage in some kind - no details described other than walking - of weight bearing exercise, and possibly show myself back at the clinic when I hit my menopausal years.
Menopause, it was explained to me over twenty-one years ago would be a critical time because most every woman at that age shows a significant decline in calcium density. For a person like myself who had already done so up to two decades earlier, there is no reason to expect that I will not show this (second decline as well. So what level of bone density is in my future?
This question is no more ambiguous than the original question of "Just how did this happen?" However, as with most unknowns, some of the possible scenarios are upsetting, even frightening in their possible implications. And those are just the ones in my mind! Meanwhile I was angry and depressed about the topic for years.
Compounding all of this, I have been relatively unsuccessful in organizing what little care I might have within my power. This includes developing a regular program of exercise and crusading in public for increased monetary and social support for osteoporosis research. I've frittered far too much time being distracted with other matters, which ironically include a diagnosis of adult ADHD at the end of my late forties.
While this last development ultimately shed the most convincing light on how one condition has impacted the self-care of another, it has also been a hurdle. Up to a dozen years earlier I had been examining the possibility of ADHD at a time when the same medical community as a whole was not yet convinced that it existed. So my local attempts to address this second question had been turned away. And I a prospective patient was frustrated and upset once more at being hung out to dry.
Ultimately, as many others have done before me, I've had to accept who I am, the period of history in which I live, and the fact all that is within my power is to endeavor to live in these times as best as I am able. In my case, more recently it's occurred to me that I can create a space of my own. How long it remains is unknown. No doubt it could change, but then no matter.
The plan is to create a picture on paper that goes back to the day the radiologist’s report on my spine came in. Then, I’ll file through my memories and redraw the entire scene as to allow that younger version of me to reach inside my brain and return the image of an upside-down woman to one whose standing all right.
***
For a general introduction on osteoporosis go to the National Osteoporosis Foundation's excellent website at: http://www.nof.org/. Since my trip in the mid-eighties to University of Washington Medical School in Seattle, WA these two excellent resources have been subsequently developed: http://osteoed.org/;http://courses.washington.edu/bonephys/.
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