THE QUESTIONABLE BLESSINGS OF A BROKEN BACK

Worried about exposure to COVID-19?  Check in with the University of Chicago and maybe they can break your back just as they did mine!   Then all you will want to do is stay home!  

In years prior, 2016, 2017 and 2018, I enjoyed brief mid-winter getaways to the Cayman Islands, a still-reasonable Caribbean spot with warm weather and beautiful beaches.

It was in 2018 on the last of these trips that I began to experience the pain that was shortly thereafter diagnosed as multiple vertebral fractures, occasioned by the delay in receiving my regular Prolia injections for osteoporosis.  

This delay resulted directly from the failure of the University of Chicago to manage these injections properly during a change in medical personnel.  

This was not a matter of an error in advanced medical decision-making.  Rather this error, which effectively ended my normal, active life, resulted from a colossal and totally unnecessary failure of what should have been the routine clerical task of properly scheduling patient appointments; an error which persisted even when specifically raised by the patient!    

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Travel has been out of the question since my back broke.  But I'm trying to look at the bright side: travel these days, involving airports, airplanes, buses, etc. could expose me to COVID-19.  

So, University of Chicago, if you run out of COVID-19 vaccine, you might consider screwing up the appointments of your osteoporosis patients just as you did mine, leaving them with painful fractures to give them plenty of protection when they can no longer engage in any normal social activities or travel without pain!

This discovery could surely reap another Nobel Prize or at least a Lasker to add to the University of Chicago's already formidable heap of these awards!

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W. H. AUDEN SAID IT WELL

Between the COVID19 pandemic and my fractures this has been a lonely time.  I stay at home and hope for chatty phone calls from friends and family.  Anything for connection! 

I am in mind of lines from a poem by the contemporary British poet W. H. Auden -- in a much longer poem, Night Mail.  

Now, more than ever, I appreciate bikur cholim, visitation of the sick, discussed in another post.  

During COVID19 it is better that this not be in person -- but how welcome are friendly e-mails, chatty phone calls -- anything to remind me that I have not totally disappeared!

Here is the entire poem:  

https://allpoetry.com/Night-Mail

These lines from this poem speak clearly to me:

Asleep in working Glasgow, asleep in well-set Edinburgh,
Asleep in granite Aberdeen,
They continue their dreams,
But shall wake soon and hope for letters,
And none will hear the postman's knock
Without a quickening of the heart,
For who can bear to feel himself forgotten?

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Note: This post also appears at: https://joanscovid19blog.blogspot.com

SOME INSPIRATION FROM PRESIDENT ROOSEVELT

A color print of President Franklin Delano Roosevelt hangs on the wall where I can see it from my bed.  

It is there to remind me of all that President Roosevelt, our 33rd President, accomplished while serving serving twelve years as President of the United States beginning in 1933 during a severe economic depression and ending when he died in office in 1945.

I need to be reminded that he did all of this while dealing with the painful and crippling results of polio (or "infantile paralysis" as it was then known).  

FDR was born on January 30, 1882 and died during his fourth term as President on April 12, 1945 at the age of 63.

Some of FDR's views and associations were certainly troublesome and this has been well-documented elsewhere.    

But his accomplishments included: 

-- Bringing us out of the Great Depression with the "New Deal" and other innovative federal programs, 

-- Leading us (and the free world) through a World War on two fronts, 

-- Enunciating and implementing programs to support the "Four Freedoms" (Speech, Hunger, Want and Fear), 

-- Initiating the "March of Dimes" to heighten awareness and support of research to end Polio (or Infantile Paralysis as it was known in those days). 

The reason he is included in this blog is that he did all of this, as noted, while dealing with the painful and crippling results of this dread disease.

As I consider FDR's life, I tell myself that I can surely put up with a couple of broken vertebrae, no matter how much pain comes with every step!

However, dealing with the anger of knowing how totally unnecessary this pain and disability was, resulting as it did from the failure of Amgen to give adequate warning about its osteoporosis drug Prolia, coupled with the dangerously incompetent administration of this drug by the University of Chicago, will take longer.

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A FAMOUS POET SPEAKS TO ME

Over half a century ago in an English literature course at Antioch College we were given an exam in which, among other things, we were asked to write an essay on a line from Alfred Lord Tennyson's epic poem "The Lady of Shalott."    

Based on an Arthurian legend, this poem recites the saga of a young noblewoman consigned to spend her days locked in a tower where, using a mirror in the window of her lonely cell, she would sadly watch young lovers embracing in the shadows below.  

In the very center of the poem you will find this verse: 

But in her web she still delights 

To weave the mirror's magic sights, 

For often thro' the silent nights 

A funeral, with plumes and lights 

       And music, came from Camelot: 

Or when the moon was overhead 

Came two young lovers lately wed; 

'I am half sick of shadows,' said 

       The Lady of Shalott. 

The line we were asked to discuss in our final exam was the last one: "I am half sick of shadows said the Lady of Shalott."  

Today as I watch the world go by through my window or sadly decline outings with family and friends because the pain resulting from the administrative ineptitude of University of Chicago Medicine (as well as COVID-19), this poem comes to mind.  

These days, my primary daily contact with the outside world is via television.  And what is television but shadows?  

I am, indeed, half sick of shadows!

The Lady of Shallot
                        

Read more about this poem and its history here:

https://en.wikipedia.org/wiki/The_Lady_of_Shalott

When done with this link, use "back" button (<) to return to this page.

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A GUILTY MOMENT OF SCHADENFREUDE

scha·den·freu·de

/ˈSHädənˌfroidə  noun.

Pleasure derived by someone from another person's misfortune. 

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Having spent the past two years unable to enjoy many pleasures of late middle age (or early old age, if you will) such as vacation travel, outdoor walks, movies, theatre, concerts, restaurant meals with family and friends, etc., because of the pain from multiple vertebral fractures associated with the medical mismanagement of the osteoporosis drug Prolia, I now find much of the world is in the same situation as I am -- trapped at home because of the emergency of the highly contagious and even lethal Corona Virus, COVID-19.  

Does this make me feel better? Not really.  

Does any of this take away the pain?   Of course not! 

Do I feel sorry for so many in all walks of life whose activities and livelihoods are so terribly disrupted now? 

Certainly I do!  And maybe I can empathize more than most, having lived through two years of this myself!

Do I wish any of this on the doctors and staff at University of Chicago whose mismanagement (described elsewhere in this blog) left me with unrelenting pain and disability?   

I'll need to think about this. Maybe there could be a bit of schadenfreude here.     I'm not all THAT saintly 

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ARE BISPHOSPHONATE DRUGS OR PROLIA ASSOCIATED WITH MACULAR DEGENERATION?

I'm dealing with macular degeneration (which I now have in both eyes) and learning more about possible links between osteoporosis and this condition and possibly the role of some of the osteoporosis drugs, particularly Prolia (denosumab).  But this may be true of the oral bisphosphonate drugs as well.   Obviously age is a common factor but retinal specialists treating me have suggested this and I have seen literature to support this.  More on this as I learn more!  

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May 8, 2021  Adding this article:

https://www.ehealthme.com/ds/prolia/macular-degeneration/#:~:text=Macular%20degeneration%20is%20found%20among%20people%20who%20take,Prolia%20from%20the%20FDA%2C%20and%20is%20updated%20regularly.

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REPURPOSING AN OLDER POEM FOR A NEWER DRUG

Many years ago the FDA approved three drugs for male erectile dysfunction.   It turned out that they had side effects that could adversely affect vision.

This also turns out to be the case with Amgen's Prolia, which already appears to be associated with macular degeneration -- as of May, 2021 dry in my left eye, wet in my right eye.  

(This association with Prolia was confirmed by the retinal specialist now treating me for macular degeneration!)

So here is a poem I wrote over fifteen years ago.  

I need to write another poem for Prolia.  But here is the original.  

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A “Dear Doctor” letter: 

 

Dear Doctor, as you toil at daily grind, 

Consider him, in lusty state of mind,

Who trembles at love’s doorstep, yet can’t cope.

For him Three Muses gently lift his hope! 

Viagra, Levitra and Cialis are their names,

And justly they have earned their worldwide fames!

Lately sprung from Pfizer, Bayer and Lilly,

They’ve made a lot of swains act downright silly!

But a darker side to pharmaceutic passion,

Should surely place your scrip on stricter ration.

Cupid’s arrows can be a sweet surprise,

But never when they strike you in the eyes.

So please accept these gentle protestations:

Love may be blind, but please, Doc, not your patients! 

 

Joan Levin -- 2005

 

 

JUVENT? MARODYNE?

Juvent and Marodyne are two devices that jiggle you around and purport to help with osteoporosis by stimulating bone growth.

I'm working with both of them.  

bright and JoansBones for inspire.com  for name Rawchi

maybe JoansBones there too?