A Short Verse

A word like “flood” can only spell doom, And a doc’s name like that can bring only gloom! For horrid mistakes there can never be room, So his mouth should be sealed like the doors to a tomb! ###

ABOUT THE REPETITION

I apologize for the repetition in this blog!  I sometimes add posts when I am sad or in pain just to let off steam.   I doubt many others read this blog.   But if you are a visitor here, this may explain why there is so much repetition.   

Maybe someday I'll sort it out and straighten it up, but for now, it is what it is.  A place for me to deal with the sadness and anger I am experiencing at the loss of pleasant retirement years due to the painful damage resulting from the unbelievably irresponsible words that fell like a toxic flood from the from the mouth of a hyper-educated medical specialist who should have known better! 

Today is Tuesday, August 8, 2023 -- a lovely summer day in Chicago.  I now live in the senior apartment building where I moved not long ago, and today I might be enjoying long walks in the sunshine.  

But while I do the best I can to get out and get moving, it is always with discomfort and even pain caused by the totally unnecessary iatrogenic (doctor-related) vertebral fractures discussed in this blog. 

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UPCOMING DATES AS OF AUGUST 12, 2023

Last Prolia was Thursday, May 11, 2023 at Northwestern.

Next shot: Thursday,  November 16, 2023.

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Here are the last few Eylea dates for Retina with Dr Chaturvedi at Illinois Retina, 25 East Washington Streets

Last Eylea shot was Tuesday, August 29, 2023 with Dr. Chaturvedi at 25 East Washington. 

Next Eylea will be Thursday, October 26, 2023, at 9:05 a.m. at same office. 

So this was previously a monthly event but now seems to be every 2 months.

Next Prolia Shot will be November 16, 2023.  8:30 a.m., escort pickup at 7:30, to go to Northwester, 676 St. Clair, Room 14-100. 

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I have an appointment with Dr. Sarai for eyeglasses on September 19, 2023, at 10:30 with a 9:30 escort pickup.   Last time I saw him was April 13, 2022.  1116 West Taylor Street.   312-829-6173.  Village eyecare.  

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MORE ABOUT THIS BLOG --WITH MORE REPETITION

Through this blog -- an unfolding account -- I share what happens when a trusted doctor gives a patient inaccurate or misleading information. 

In this case, it was an eye specialist -- a retinal specialist actually -- who flooded me with totally erroneous information about why I had an eye condition called "macular degeneration."  

When I asked this specialist why I had this eye condition, his answer was: "Because you are on Prolia!!"   This is the drug I was prescribed for osteoporosis, to be injected by a bone specialist every six months.    

Believing what this eye specialist (erroneously) told me, I tried to get off Prolia by delaying the appointment for my next shot.  I thought I could perhaps "wean" myself off this drug without consequences.    Bad idea!  The result of my effort to save my eyes by getting off Prolia was several vertebral fractures that have left me with a flood of pain and disability to this day!  

Only later did I learn that the osteoporosis drug Prolia had nothing to do with the eye condition.  It was the osteoporosis itself that was the link!  

But the dangerously inaccurate and definitely misleading information purveyed by a respected retinal specialist  -- who should have known better -- was a major factor in destroying any hopes I might ever have had for the enjoyable retirement activities I so looked forward to during my working years. 

As of this date, late in 2022, I have been living for over four years with the life-altering pain and disability resulting from that inaccurate information purveyed by a retinal specialist who should have known a lot better!       

 

Prolia (the registered trademark name for the drug denosumab, manufactured by Amgen, Inc. and wrongly cited by the doctor here as being responsible for my eye condition), is a monoclonal antibody administered by injection every six months for the treatment of osteoporosis.  

There is strong evidence to suggest that even short delays in this six month schedule may result in fractures such as I experienced.  

I had read the warnings about "not stopping Prolia without consulting a physician," and I had been on Prolia for years with no intention of stopping.   

But it was the flood of erroneous information given to me by that retinal specialist about my eye condition that caused me to stop Prolia, leading to the painful fractures described herein.  

This could have been entirely avoided!  Instead of saying that the eye condition in question was because you are on Prolia,  the doctor could simply have said because you have osteoporosis.  

This was essentially the opinion of every medical expert I consulted on the subject.  

I share this in hopes that it may spare others unnecessary pain!

Please note that this blog is a work in progress.  I will continue to add to it and also make revisions mostly for the sake of currency, brevity and clarity.

This blog is therapeutic for me.  It helps to get the poison of my anger out of my system, especially at the medical "expert" whose flood of spectacularly inaccurate words created such painful and permanent damage to the only body I will ever be given on this earth!   I also hope it will warn others!   However, I apologize for the length and repetitiveness of many of the posts.

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Here, in this rather large nutshell, is how in just a few days I changed from an active 80 something going on 60, to a semi-invalid who feels like she is going on 120!

This totally unnecessary iatrogenic disaster might have been avoided by a few well placed words of warning.  More prominent warnings by  Amgen, Inc., the manufacturer of Prolia, might have saved me, and perhaps many others with similar eye conditions from a flood of pain and disability.   

I would like to see more easily obtainable, reliable information consumers about eye disorders that may be linked to osteoporosis. 

The posts in this blog are mostly in reverse chronological order,  newest first (this introduction excepted).  They include my account of the effects of this totally avoidable situation that basically destroyed what I have every reason to believe would otherwise have been an active and reasonably pain free old age!   

Here, for convenience, are links to a few more of the early posts about events setting the stage for the subsequent years of pain and disability.  

http://www.joansbackbonedisaster.com/2018/07/getting-started-with-new-drug-short.html

and: 
http://www.joansbackbonedisaster.com/2018/07/seduced-and-abandoned_5.html

But more than anything -- a modicum of common sense by a specialist eye doctor who surely knew better than what he told me -- could have spared me the flood of immeasurable pain and the physical loss, as well as any chance of enjoying activities I had planned for my retirement years. 

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BECAUSE YOU ARE ON PROLIA REVISITED

 I am still trying to figure out why the retina specialist whom here I will call Dr. Deluge answered my question about why I had macular degeneration by saying "Because you are on Prolia."    

As discussed elsewhere this caused me to believe I had to choose between my bones or my eyes, and I live each day with the flood of pain of resulting when I acted on that belief!

Could he have meant "because you have osteoporosis?"

If so, why didn't he say that. to allow my life to go on as normal?

The thoracic and lumbar fractures I now live with will always create problems for me.  And my body will always be deformed and likely a lot weaker.   

But at least I can protect myself from more damage and still get my eyes taken care of and Prolia shots as well!  

My last Prolia shot was on May11, 2023 at Northwestern.  

The next Prolia shot will be on Thursday, November 16, 2023 at 8:30 a.m. at Northwestern with Dr. Hahr.   (676 St. Clair, Room 14-100). 

My next Retina date is on August 29, 2023 with Dr. Godspeak.   

I hope he will make these issues clear to his patients -- which Dr. Deluge so carelessly and/or thoughtlessly and/or deliberately and/or disastrously failed to do!   

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HOW EMILY DICKINSON MIGHT RELATE THIS!

HOW EMILY DICKINSON MIGHT RELATE THIS!* 

When lawyers screw up they may be disbarred.

Comprehending this fact should not be so hard!

Clients will pay and give trust unalloyed. 

Never expecting that they’ll be destroyed!

Per contra: 

When when docs’ words leave patients in tatters, 

They just go right on as if nothing else matters! 

So I drowned in floods of horrendous advice,  

From a careless physician, at least once or twice!  

jdl 2022

*My reaction to being carelessly told by a retina doctor that my eye condition — macular degeneration — was because I was on Prolia, causing me, fearing for my eyesight, to skip a Prolia shot, resulting in three painful vertebral fractures!!!   

In fact, as I learned too late from what turned out to be a more reliable authority, the eye condition was related to osteoporosis and not to Prolia!  

Adding this in January, 2023:

When you're dumb as a sack full of hammers,  

You should only treat eyes from a spud, 

But, pardon my verbal bad manners,

That rule washed away in a flood!

What more can I say of these matters? 

I really was plain out of luck!

That doc left my body in tatters!

No question, he was one dumb f---!

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QUESTION FOR A RETINA DOCTOR: A POEM WRITTEN DECEMBER 11, 2022

I asked the doctor why he stuck that needle in my eye!

“It’s plain to see!” he told me, “and here’s the reason why!”

“You have an eye condition: macular degeneration.”

“Why do I have this?” I replied.  “What is the explanation?”  

No pause or hesitation for that doctor’s quick reply:

“Because you are on Prolia, and that’s the reason why!” 

“Oh my gosh” I thought at once, “Now I will have to choose!”  

“My vision or my backbone; Oh, which one would I lose?”

At last I made the awful choice: my bones would have to go.

I didn’t get my Prolia shot, the rest, I guess, you know!

Soon after, in a flood of pain, three vertebrae were shot!

Life as I knew it ended, right there on the spot!

No more driving, no more travel, just a lot of pain!

My active life cut with a knife — and sent right down the drain!

Not long afterwards I learned I’d got bad information. 

And why that doctor said those words?  I have no explanation.

All too late I learned that this condition of the eyes,  

Is from osteoporosis, NOT Prolia; but I was too late wise!

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WORDS IN A FLOOD-- A POEM -- December 8, 2022

Arrogant, thoughtless words in a flood!

Could it be from a brain that is only a spud? 

So sharp with the needle, so dull with the words, 

That I’m dragging my years like a sack full of turds!

I’ve said it once, twice and I’ll say it again - 

I live with such pointless and unneeded pain!

Some days I just wish that I weren’t alive,  

But venting this anger helps me to survive!

Wherever he is with his careless old tongue, 

I hope he’s not harming folks - aging or young!

My many nice plans for retirement gigs, 

Including some travel and fun with the kids, 

Are consigned to the trash heap of “never to be,” 

For his arrogant thoughtlessness did that to me!

Joan Levin,  December 8, 2022

Dedicated to Dr. Timothy Flood