Plowing on with gratitude on all fronts – Bone Talk

It’s fair to say that I’ve been a rule follower for most of my life. After all, I am an eldest child.

I have always valued and protected my health, making sure I eat healthy foods and do many of my favorite exercises such as walking, yoga, swimming and cycling. I have been grateful for good health.

So I was stunned when, at age 61, I learned that I had quite severe osteoporosis. I heard this after begging my doctor for one DXA scan. She said I didn’t have any risk to warrant the screening. I argued that I have a small frame, which puts me at risk. She finally gave in three years after my original request.

After the shock of the diagnosis and the anger at the lack of prevention wore off, I had to do something – quickly, I thought. My grades were that bad. Two endocrinologists told me to take anti-resorptive medication immediately, and my doctor gave me a 25-year-old book on building bone.

Of course I needed more than this. There was probably someone who could help me tackle this on all fronts. I never believed in taking a pill. But this search proved futile for quite some time.

I took the medication and was fortunate that I had no side effects. But I was plagued by doubts about whether and how to lead an active life. How was I supposed to do yoga now? What about gardening; lifting my luggage, and most importantly – my grandchildren? How was I supposed to live my life? I hated thinking of myself as vulnerable.

So many questions, so few answers. It was clear that the specialists I consulted did not have a holistic approach.

A search for the Bone Health and Osteoporosis Foundation website led me to answers that made sense to me through a newly formed monthly virtual support group over three years ago. It’s called OsteoBoston and is led by an experienced facilitator who hosts expert presentations in all aspects of wellness to improve bone health. Over time, I have learned so much about the latest research and how diet, bone-building exercises, nutritional supplements, and medications can work together to improve this condition. Just as valuable is the second hour of our Zoom calls, in which the 30+ people (mainly women) learn from and support each other. And while I never got a one-stop-shop, one-place approach, OsteoBoston has been a lifesaver.

As I reflected on my journey over the past six years, I realized that it wasn’t my doctor’s fault for not giving me a basic DXA screening. She was just following protocol. Why isn’t this done for bone health, just as baseline mammograms at age 40 detect and treat breast cancer? If it is common for women to lose significant bone in the years after menopause, should they not have a basic DXA scan before menopause to detect bone loss, treat it early, and prevent unnecessary suffering and mobility loss caused by fractures ?

So today, I am still a rule follower, but I listen to a variety of sources and the wisdom of experience to determine which rules I follow. I know where to find the latest research. I have an endocrinologist I trust. I do bone-building exercises most days and eat a variety of calcium-rich foods. I am confident that I am doing everything I can to deal with this condition. The medications I have been taking have improved my bone strength. And I am also satisfied that this learning process has given me the tools to prevent further bone loss. I am forever grateful to this OsteoBoston support group, which includes people from all over the country. Thanks to the leadership’s dedication, we now have a YouTube channel sharing recordings of more than 25 recorded presentations and a website where we can share our resources at osteoboston.org.

Finally, I now accept that this is a lifelong condition that must be managed. And as I do that, I want to focus on advocating for early screening and education to help others become aware of how important bone health is to our well-being.

I hope to be around for a long time and I want a body that supports my dreams.

This story is part of a support initiative called Voices of Osteoporosis: Stories of Hope and Inspiration. If you have experienced osteoporosis as a patient or caregiver, we invite you to share your story. Your story can inspire others to learn how to protect their ability to live their best life and stay strong. click here learn more.