SOME DATES TO REMEMBER

JANUARY 17, 2017 AND JULY 18, 2017:  PROLIA SHOTS  (UNDER DR. A.) BOTH ON TIME WITH NO PROBLEM.   (AS WERE ALL PRECEDING ONES AT THE PRESCRIBED 6 MONTH INTERVALS).

SOMETIME BEFORE JANUARY 22, 2018 WHEN NEXT PROLIA SHOT DUE,  DR. A RETIRED  AND I WAS ASSIGNED TO DR. B.     MY PROLIA SHOT WAS DUE THEN BUT DR. B WAS ALREADY BOOKED UP AND COULD NOT ON OR SEE ME BEFORE JANUARY 22. 

THEREFORE PROLIA SHOT ORIGINALLY SCHEDULED FOR JANUARY 22 OR 23, 2018 WAS CANCELLED BECAUSE OF DR. A'S RETIREMENT AND DR. B'S BUSY SCHEDULE AND I COULD NOT HAVE PROLIA SHOT (NORMALLY ADMINISTERED BY A NURSE) WITHOUT FIRST SEEING DR. B., WHOSE NEXT FREE APPOINTMENT WAS ON MARCH 16, 2018, THAT IS,  NEARLY TWO MONTHS AFTER MY PROLIA SHOT WAS DUE!  

 MY BIG MISTAKE:  THINKING THE WORLD-FAMOUS UNIVERSITY OF CHICAGO MEDICAL CENTER KNEW WHAT IT WAS DOING!

IN FEBRUARY 2018, WHILE ON A TRIP, I EXPERIENCED PAIN WHICH OVER THE NEXT FEW WEEKS BECAME EXCRUCIATING AND DID NOT RESPOND TO REST AND ASPIRIN.  I HAD NEVER HAD PAIN LIKE THIS IN MY LIFE! 

WHEN I GOT HOME, IN TERRIBLE PAIN, MY NORTHWESTERN INTERNIST SAW ME AND SENT ME FOR XRAYS REVEALING THREE VERTEBRAL FRACTURES!  

I CALLED THE UNIVERSITY OF CHICAGO DOCTORS AND GOT A PROLIA SHOT MARCH 16, 2018, as noted above, two months after it was due.  

I ALSO SAW THE NEW DOCTOR, DR. B., WHO ACTUALLY  LAUGHED BEFORE EXPLAINING TO ME WHY THE DELAY IN GETTING MY PROLIA SHOT HAD CAUSED MY BONES TO BREAK!   AND THIS, WHEN IT WAS HER OWN INSTITUTION THAT HAD CREATED THIS DELAY IN THE FIRST PLACE!   

I could only think of this line from Shakespeare's Romeo and Juliet:

"He jests a scars that never felt a wound!"  Glad to give you something to jest about, Doctor!  

MORE ON THIS THIS ELSEWHERE IN THIS BLOG!

HOW LONG CAN I STAY ON PROLIA

When an earlier Prolia shot was late, as noted elsewhere in this blog, bones broke.

But now I'm told you cannot stay on Prolia for over 10 years 

So what to do?

https://melioguide.com/osteoporosis-treatment/how-long-can-you-take-prolia/

Prolia Labeling

https://www.proliahcp.com/?&utm_source=bing&utm_medium=cpc&utm_campaign=2017_ProliaHCP_Branded_Treatment_Exact%2BPhrase&utm_term=prolia%20prescribing%20information&utm_content=Treatment_PI_Brand_Exact&gclid=d52413ae26231bef4ac34c6d043cf00e&gclsrc=3p.ds 

Melioguide

https://melioguide.com/osteoporosis-treatment/how-long-can-you-take-prolia/#respond#:~:text=They%20do%20not%20persist%20for%20more%20than%20six,persist%20for%20longer%20than%20three%20to%20six%20months%2C

I need to interview my doctors more closely about this.  

There are links on this topic elsewhere in this blog. 

http://www.joansbackbonedisaster.com/2020/03/will-i-have-any-vision-in-2020.html

PROLIA DIRCT TO CONSUMER TV ADS

As if this drug hadn't already caused enough damage when most patients learned about it from their doctors, Prolia (denosumab) is now touted in Direct to Consumer (DTC) advertising on television!  

Here is a link to a few of the spots you might have seen: 

https://www.ispot.tv/brands/dHV/prolia 

One of these repeatedly aired Prolia spots features a woman slipping and falling accompanied by the words "forget something?"  

The implication is presumably that she if didn't get her Prolia shot she would be at risk for fractures.  

Since I can't get around very well because of my Prolia-related fractures, I watch a lot of TV, and so I see these ads at all hours!  

I only hope that others seeing these ads and considering Prolia will discuss it with doctors who are fully informed and prepared to convey to their patients the horrendous downsides of Prolia!

And given what Prolia has done to my eyes (see post on Prolia and Macular Degeneration) perhaps a future ad should have the lady falling down because she is ON Prolia but now she is BLIND!  

http://www.joansbackbonedisaster.com/2020/03/will-i-have-any-vision-in-2020.html

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HOW TO TRAIN AN OLD WOMAN

When I was ten years old we moved from the city to a leafy green suburb.  I missed my old friends but quickly made new ones and I liked my new school. But the very best thing about this move was that I could have a dog!

My dog was so sweet!  I loved him and I took him to obedience class and worked with him on basic skills like "sit," "stay," etc.   But, while sweet and friendly, he was not at all interested in obedience training.  So while he eventually learned a few few basic commands he only obeyed them when it pleased him to do so. That said, he was always a dear companion!

Sometimes when he was lonely at night he would cry.  At first I would pick him up and let him stay with me.  But I was told that if I did so,  he would never learn to sleep through the night, so I made myself ignore his cries.  In time he was "trained," but It still makes me sad to think about this.

Later when my sons were born, the "authorities," including no less than Doctor Spock, advised letting babies "cry it out” a bit when putting them down to sleep.  And indeed, in time they learned that once they were settled down in bed their sad whimpers would avail them nothing and they would go to sleep.  They were "trained."  But I never got over feeling guilty about this either.  

Today the tables are turned. My children are training me.  I’m almost immobilized by the pain of multiple vertebral fractures resulting from the medical mismanagement of the drug Prolia (as described elsewhere on these pages).  This, plus the COVID19 epidemic, keeps me quite close to home.  

Any reasonable social life -- dinner at a restaurant or a day at the beach with friends or family, or other social get-togethers -- is quite out of the question for both of these reasons.  

I live alone, which is fine, but I do like to chat with others occasionally, especially my family.   Even a weekly phone call about nothing in particular would be so welcome. 

 

But this only happens sporadically.  Everyone has busy lives.  That’s how it is and I live with it.  My stuffed animals have become my conversation companions, and I live with it. Like my little dog who learned to stay close when walking and to sleep quietly through the night, I’m learning this too!  In time I'm sure I'll be trained.

I keep reminding myself: An old lady is not a young beagle or even a human infant.  I should be able to take care of myself and not be a nuisance.  I do my best. I'm trying hard to be trained!

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WHEN YOU'RE DOWN AND OUT

Nobody Knows You When You're Down and Out was a song of the Great Depression, but it's how I feel now when I'm down and out with disability and pain.  

I've discussed this song elsewhere in this blog but it keeps coming back for me so here it is again!   This time with more background and a performance by the great Bessie Smith!

Here's more about that song!   

https://en.wikipedia.org/wiki/Nobody_Knows_You_When_You%27re_Down_and_Out

It was written by James Cox in 1923 and first recorded by Bessie Smith.   Many have sung it since, but none like Bessie Smith, so listen here:

bessie smith nobody knows you when you're down and out

Here are the words so you can sing along! 

Nobody Knows You When You're Down and Out

Once I lived the life of a millionaire,
Spending my money, I didn't care
I carried my friends out for a good time,
Buying bootleg liquor, champagne and wine

Then I began to fall so low,
I didn't have a friend, and no place to go
So if I ever get my hand on a dollar again,
I'm gonna hold on to it till them eagle's grin

Nobody knows you when you down and out
In my pocket not one penny,
And my friends I haven't any
But If I ever get on my feet again,
Then I'll meet my long lost friend
It's mighty strange, without a doubt
Nobody knows you when you down and out
I mean when you down and out

Mmmmm, when you're down and out,
Mmmmm, not one penny
And my friends I haven't any,
Mmmmm, well I felt so low
Nobody wants me round their door,
Mmmmm, without a doubt,
No man can use you wen you down and out
I mean when you down and out

Songwriter: James Cox 

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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