My Big Mouth

Today I received my first injection of Prolia. This is a medication that treats osteoporosis—loss of bone density—that affects millions of women and men as we age. As I understand it, this medication cannot make new bone, but it can help prevent further loss. The causes of osteoporosis, my primary physician tells me, are largely genetic. My mother had this issue and I am structurally built along the same lines: petite, fine-boned. There are so many medical things I wish I had asked my mother, but at the time I was an oblivious thirtysomething, living my life, allergic to thoughts of the future. Now I am 66 and the future is here and real. In so many ways I try to live as if I were 35, but bone scans don’t lie.

I live in a small city in the Hudson Valley and we do have a local hospital. When I left Brooklyn, I gave up my city doctors with some sadness, especially my gynecologist, who had taken good care of me for years. Consistency has value. The same woman examined my breasts and read my mammograms and sonograms and if I had what felt like an emergency, the office squeezed me in. Since moving here, I have been with the same primary care physician for almost a decade and she cares for me in a similar way, even though insurance companies, including Medicare, would prefer that she take less care. I have been less fortunate with gynecologists. I have cycled through several. The previous one leaves, I get shifted over to a new person, and just when I am getting to like them, they move away. This happened about six weeks ago, when my then gynecologist ordered a scan and told me that a new doctor would be taking over her practice. The new gynecologist’s nurse called me three weeks ago to tell me that the condition of my lower lumbar spine—previously osteopenia— had progressed in the wrong direction. I figured that this new gynecologist would now prescribe Prolia, the drug that my primary doctor had tried to prescribe several times for me and failed as my then insurance wouldn’t cover it. So for some years I had been taking an oral medication called alendronate that kind of works but also has unpleasant side effects, such as intermittent but quite acute heart burn. I had figured out some hacks, but let’s just say that sometimes I didn’t take it as I was supposed to because my digestion couldn’t take any more assault.

This new gynecologist had never met me and perhaps because it was a busy week, made the decision to refer me to an endocrinologist in Albany for further treatment. Okaaaay, I said.

I called the endocrinologist in Albany and was told that the first available appointment was in mid-September. No, this was not acceptable. First, I am told I have a serious condition that needs a specialist and then I am told I need to wait—what—seven months?!? So that my already not-dense-enough bones can get worse?

Fortunately, my mother gifted me with a big mouth and when necessary I am not afraid to use it. I called my primary physician and got an appointment right away. I asked if she could try again for the Prolia, now that I am older and on Medicare. She said she could prescribe, but it still might be a struggle. Yikes, I thought. Two years ago, I tripped and fell on one of the many crumbling sidewalks in our town, sustaining a hairline fracture in my left foot. Painful and incapacitating as that was for a month of my life, now I felt lucky that I hadn’t busted up worse.

We waited for approval and this time it came and promptly. Because of my Medicare deductible, the cost would be $700. Yes, there are payment plans, but really?! A billion dollars a day spent per day in Iran but nothing for us? My fury was already at high boil, but the alternative was to continue with the medication that causes heartburn or inaction, now unacceptable. My mother died at 78, but my dad is 100. If I got his longevity gene, I might be around for a while and if that is so, I do not want to be doing that with a crumpled spine, if I can possibly avoid it.

Prolia is shipped chilled and requires continuous refrigeration. And so, this morning, I walked up to the hospital—weight-bearing exercise! Good for bones!—and received the injection in my belly. Nothing to it, over in a flash. The nurse told me it would take a year to see results. And, because of insurance company limits on care, I won’t be able to get another bone density scan for three years. So, it will be anyone’s guess as to the results of this intervention.

“Really?” I asked her. “Don’t they want to know if it’s working?”

“Well, no,” she replied with a sigh and a twisted smile. “Insurance companies tell us how to practice medicine.”

More fury, but at least I have been as proactive as the system allows. And I am fortunate to make a decision to pay $700 in addition to my insurance costs. I am upping intake of everything with calcium and Vitamin D3. The bone scan got my attention and hopefully it is not too late to stabilize or perhaps even reverse course.

I share this story to remind women that even if you take Pilates or yoga or go to Crossfit every day, this may not be enough if you are genetically predisposed to bone loss. I am also here to tell you that you may encounter resistance from insurance companies that will infuriate you, but I hope you will persevere. Until something shifts so that we can have universal healthcare, we must open our mouths to advocate for our bodies…since no one else will do it for us.

And also, happy spring! Snowdrops have sprung up in my garden and I can’t wait to be planting again.

THANK YOU for reading and I’d love to hear from you! More posts on Fridays at noon. I hope you’ll subscribe (paid subscriptions help support independent writing on Substack!) and share with other readers. A free and open press has never been more important, especially as we experience life under an administration in Washington that is no friend to writers or readers.

You can find out more about my memoirs Perfection and Eva and Eve here and purchase here.

I work privately with memoir writers. You can reach out via my website: juliemetz.com.