Robbin L Marcus
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Resistance - Living with Osteoporosis

3/28/2024

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I vividly recall bouncing on my grandmother’s small lap as she sang “Five foot two, eyes of blue” into my ear. She loved that song – my grandfather courted her with in back in the early 1920s. 

There was a pervasive standard of beauty that celebrated tiny, birdlike women a hundred years ago. My grandmother, who fit that bill, took full advantage of her moment in the sun. Size five shoes, impossibly small wrists, she was barely 5’2”.

My grandfather was smitten.

My mother was 5’4’’, I was once 5”6 ¾. We all have those tiny wrists – mine is 5 ¼” all the way around. My feet are a European 37/US 7. 

By the time she died, my grandmother was 4’ 11”.

Somewhere in the early 80s, while my mother was still alive, a new medical term started appearing all over the news – osteoporosis. From the descriptions blaring over the television, it seemed clear that my grandmother had it. Mom and I made her go get checked. Indeed, she was at high risk of fracture, but was not a candidate for any of the oestrogen replacements offered at that time due to her history as a breast cancer patient.  My grandmother became increasingly fearful of falling and fracturing something. She shrank further as she stayed bent to look at the ground while she was walking. We tried to get her out of her heeled shoes and into some sneakers, but her heels no longer rested on the ground and sneakers were very uncomfortable for her. She resisted any help that was offered, firmly and clearly. Mom and I gave up.

I was 25 years old in 1984. Since then, osteoporosis, like the sword of Damocles, has been hanging over my head.  I took pounds of calcium supplements. I ate right. I exercised regularly (still do.) And yet, as a tiny little white woman with a family history of osteoporosis, I knew it was coming down the track. 
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American women of my generation remember clearly the actress Sally Field appearing on TV in the early 2000s, hawking the wonder drug that was Boniva. Just as clearly, we remember the debunking and loss to her reputation when it was revealed that Boniva increased the incidence of fractures of the femur, the strongest bone in the body. That class of osteoporosis drugs, the Bisphosphonates, terrifies many of us and is the primary reason for treatment resistance among women over 50.


The train arrived at my station early after menopause. My bone density score took a plummet in my spine a year after I slipped down the stairs and cracked my sacrum. My wake-up call. It had been difficult to exercise during that year-long recovery, and the results of that were clear. I begged my doctor for another chance to get back to my health and bring my scores back to “just” osteopenia. I worked hard to do that, went on hormone replacement therapy, and I did it. 

Four years ago, even with doing all the things I knew to do, I started to feel what I can only describe as a crackling in my spine. When I moved, it crinkled and crackled. It didn’t happen all the time, but when it did, I was acutely aware of it. I also noticed that it seemed to require all my Alexander Training to “think up.” Sometimes I’d see myself in the mirror and notice a bit of a hump starting just behind my forward head position. What in the world….

My next bone density test was just terrible. 

My doctor begged me to start medication. Every fiber of my being was screaming “NO!” We had a clear discussion on the three classes of drugs she considered the best option for me. I agreed to think about it.

I went out to lunch with 10 friends to celebrate a gal pal’s birthday. When it came to my turn to talk about what was new, I took a deep breath and brought up osteoporosis. There were five other women at the table in the same dilemma. We were all scared to death – what was worse – the treatment or letting it go? Several others were on Prolia, an injectable with the least amount of side effects and they were all pleased with their responses to it. 

Reluctantly, I went on Prolia. Three years later I’m back to osteopenia and my numbers have climbed dramatically. The crackle is gone. I have about 2 years before my doctor advises switching drugs. The rest of the options are not terrific. There are new drugs in the pipeline. 
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I watch and hope and continue to exercise. 
Osteoporosis is an enormous and growing public health problem. Once considered an inevitable consequence of ageing, it is now eminently preventable and treatable.

Ironically, despite tremendous therapeutic advances, there is an increasing treatment gap for patients at high fracture risk(…)Despite remarkable advances, concerns about rare side-effects of anti-resorptive drugs, particularly bisphosphonates, and the absence of clear evidence in support of their long-term efficacy is leading many patients who could benefit from drug therapy to not take these drugs. As such, there remains an important clinical need to develop ways to enhance patient acceptance and compliance with these effective drugs, and to continue to develop new drugs that do not cause these side-effects and have prolonged anabolic effects on bone. 
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-Osteoporosis Treatment: recent developments and ongoing challenges, Sundeep Khosla, MD and Lorenz C Hofbauer, MD, Prof , article published in “Lancet,” July 7, 2017.

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Resistance - Is is my ankles, or something else??

3/27/2024

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This is the pond where I learned to skate as a child.  The pond in the story was far bigger than this one! RLM

I sat on the cold log lacing my skates. I could feel the icy breeze blowing in from the pond surface on my reddened cheeks and earlobes, the only parts of me that weren’t thoroughly covered in damp wool. Struggling to stand, wobbling away as always, I made my way to the edge. 
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The translucent ice was bumpy and rutted, especially at the edges where the small children came and went and dug their picks in. The further away from the edge, over the deeper water, the clearer the ice became. There was a smoother feeling and look of clarity where no one else had been. I glided over the bumps towards the darker ice, loving the freedom that skates gave me. 

A group of my friends were not far away. I skated up to them. 

“C’mon! We’re going all the way to the end!” and off they went in a flash of blades and chatter. I took off after them, determined to keep up, determined to stop the unstoppable wobble in my ankles. I knew I had about an hour, tops, and then I’d either twist my ankle, fall, or both. 

I didn’t talk about it anymore unless I really hurt myself. My parents just said, “You need to skate more and strengthen your ankles.” But I was plenty strong. My legs could hike and walk and bike for miles, and did, every day. I was a free-range kid who lived outside whenever possible. I knew deep in my heart that muscles were not the problem, but I had not the words or the knowledge to know what was.

Earth Wind and Fire’s ‘September Song’ pulsed out from the sound system. “Come on! Let’s get out on the dance floor!” I jumped up to join my college friends and get the party started. My beautiful new platform clogs and I were ready for anything, except me falling off them.  Which, of course, I did. Repeatedly, in any number of situations, until I finally learned that my ankles were not going to let me wear those kinds of shoes. 
It was a beautiful spring day. I was with a troupe of Morris Dancers, having the time of my life, entertaining the crowds in Richmond, Virginia who’d come out to see us welcome in the spring. Most of the time we danced on pavement, but just now we were parading over to do a mass dance on the lawn under the statue of Robert E Lee (yes, the one that recently came down.) I capered up, leg bells jingling. Coming down my right foot landed in a hole. Mole sized. Just enough to catch my foot so well that my ankle twisted once in each direction before I was able to free it. 

That double injury was enough to finally send me to a doctor, who sent me to a Physiotherapist, who kept me Morris dancing for a few more years as long as I always wore a brace on that ankle.  But no one could explain why my ankle was so weak, other than telling me I’d already sprained it so many times that my ligaments were loosened.
The resistance I encountered throughout my life to being a person living with EDHS* was simply stunning. My hypermobility was never acknowledged, never considered, always discounted. The numerous dislocations, back injuries, stomach upset episodes – all of it – met with blind resistance from doctors and family alike. I didn’t hear the words EDHS until my late 30s. I had to be in my 50s to finally find out that literally everything that had every been wrong with me was all completely interconnected by a collagen disorder. 

Years later I’m still angry about this – but now when I encounter a resistant doctor, I tell them what I have. I make them learn about it. I refuse to see physicians or somatic therapists of any kind who don’t understand. 

I can resist, too. 

*Ehlers-Dahmlos Hypermobility Syndrome 
For more information:
https://www.ehlers-danlos.org/what-is-eds/


Research shows men in chronic pain tend to be regarded as “stoic” while women are more likely to be considered “emotional” and “hysterical” and accused of “fabricating the pain.”
Research shows women’s physical pain is also often attributed to psychological causes.
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  • Lindsey Bever, The Washington Post, 12/13/23, How Doctor’s Dismiss Women’s Pain
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2024 Blogs = some Resistance!

3/26/2024

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Writing on a Theme of Resistance, March 2024
Introduction  
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by Robbin Marcus

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“It is easier to resist at the beginning than at the end.” 
― Leonardo da Vinci

“Come, child, come…” whispered the wind through the branches. I look up to see a path beckoning me. Not yet, I say to myself.
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Picture
“Jump! Just Jump!” burbles the water sliding down the rocks to the swimming hole. I can’t, I say to myself.  I’ll put a toe in the water, though. 
 
The deer says nothing, but locks eyes with me, reproachfully. 
Ok, I say to myself. One more step. I’ll sign up for a group. 
 
The rocks hum, deeply, loudly, bone-shakingly. “Claim your power,” they insist.
 
I look, exasperated, at the boulders. What more do you want? I’ve been maiden and mother. I’m fully embracing crone. 
 
“NO, YOU ARE NOT” says everything in the woods, simultaneously.
 
 Is resistance futile? Who and what am I resisting? Am I resisting for someone else? Is that person even alive? 
 
These are the questions I want to explore in this year’s writings. Join me on the path of (?) least resistance??
What will follow are excerpts from a 21 day writing challenge I did in February and March of 2024. I have chosen selected writings from that challenge that support my work and are a good addition to this particular body of work. Enjoy! - Robbin
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    Robbin Marcus


    ​

    An occasional post from me, about stuff that interests me.

    2025 blog series:
    Cleaning Out the Old

    2024 blog selections: Resistance

    ​2023 blog series:
    Slow Forward 
    ​
    2020 blog series:
    1) Processing - Experience, Thought, Action
    ​2) Diving for Light - Shedding 
    light on a dark time
    ​

    2019 blog series: 
    Exploring the Power of Habit 

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