My physical therapist suggested I try a TENS device to help with pain management and let me have one to try.
TENS is an acronym for Transcutaneous Electrical Nerve Stimulation.
Mine is about the size of my cell phone with wires extending to small "sticky" electrode patches which the PT showed me where to place on my back. It can run on either regular house current or 9 volt batteries, the latter allowing me to be somewhat more mobile.
The basic principle of TENS is that its vibrations interfere with the pain signal. I've heard that it works on about 50% of the people 50% of the time, but I thought it was worth a try, as the pain I'm experiencing after about an hour or two of sitting or standing is unrelentingly intolerable, and this definitely limits my activity.
So far it seems to be working well enough. The pain isn't completely gone but it's bearable. When it gets bad I turn it on for about 15 minutes and I do feel better. And as as I'm told sometimes happens, this "better" lasts for a while longer. When the pain returns I give it another session.
While I don't much care for having wires running from my body to yet another thing to haul around in my purse, the TENS device has given me a little more mobility. And it does not impair driving.
By no means am I back to my usual functioning self, but it's given me some ability to do some things that were simply too painful because they involved sitting or standing for more than an hour or two.
Sunday, October 14, 2018
Monday, September 24, 2018
INADEQUATE WARNINGS AND AN IGNORED MODEL
It certainly appears that Amgen is not about to warn patients of the consequences of even a short delay in getting the semiannual Prolia injections.
See, for example, https://www.ispot.tv/ad/w8q3/prolia-hiking-featuring-blythe-danner.
When you get a Prolia injection, the nurse may give you a card like this:
As a warning, this card has no more utility than the little card you get for your next dental cleaning! No warning whatsoever about the danger of even a short delay. (The only thing added besides the date was the "+ 1 week" to assure Medicare payment!)
So I urged Dr. B. to at least warn her patients.
She did so by means of this red-bordered card she said she now gives patients on Prolia.
This is one doctor's apparent effort to warn, but it cannot begin to have the outreach of a large pharmaceutical manufacturer that advertises on prime time TV with a well-known actor touting the vaunted advantages of Prolia.
However, this doctor's attempt fails to mention:
1. The danger of even short delays, and,
2. information about what to do if unable to keep an appointment, and,
3. What to do and, most importantly, WHOM TO CALL if you are blocked by the "front desk" for ANY reason, as I was when I tried to explain the importance of getting that Prolia shot on time even though the new doctor did not have an opening for an appointment yet!
I tried to explain this in the draft handout below.
It is important, for example, for a large medical center especially, to provide a phone number should an appointment change be needed, answered by staff prepared to warn patients of the consequences of delay.
This draft leaves space for such a number to be included and gives a stronger, much clearer warning!
If every doctor administering Prolia gave patients a warning along these lines, including the name and telephone number for someone who could intervene if, for any reason the "front desk" prevented the administration of Prolia on time, I believe much suffering could be averted. Mine certainly would have been!
Also, patient records and other files should be RED FLAGGED to alert ALL staff (including schedulers) that this patient is on Prolia and that their injections must not be delayed.
I specifically asked about this when I was told that the new doctor could not see me for months after my shot was due. I was told that I would have to wait until I saw her to get that shot. I assumed this was correct information. It wasn't. And it left me with severe pain and disability now nearly entering a third year.
So while patients would benefit from a properly worded reminder card, office staff WORKING UNDER THE DIRECTION OF THE MEDICAL PROFESSIONALS must be prepared to convey proper information, instructions and reminders as well!
Also, in the wake of many cases like mine that I am learning about, Amgen needs to take necessary steps too, beginning with using the five letter word word "DELAY" in its warnings to patients!
Medical professionals may understand that words like "discontinuation" and "stopping" are enough, but patients information definitely requires warnings using the word DELAY as well.
This is why -- even though I'm just one person, and in pretty bad shape even to be sitting up to do this -- I'm doing what I can to get the word out to as many people as I can reach. Because no one else seems to be doing it!
This blog is part of that effort!
See, for example, https://www.ispot.tv/ad/w8q3/prolia-hiking-featuring-blythe-danner.
When you get a Prolia injection, the nurse may give you a card like this:
So I urged Dr. B. to at least warn her patients.
She did so by means of this red-bordered card she said she now gives patients on Prolia.
This is one doctor's apparent effort to warn, but it cannot begin to have the outreach of a large pharmaceutical manufacturer that advertises on prime time TV with a well-known actor touting the vaunted advantages of Prolia.
However, this doctor's attempt fails to mention:
1. The danger of even short delays, and,
2. information about what to do if unable to keep an appointment, and,
3. What to do and, most importantly, WHOM TO CALL if you are blocked by the "front desk" for ANY reason, as I was when I tried to explain the importance of getting that Prolia shot on time even though the new doctor did not have an opening for an appointment yet!
I tried to explain this in the draft handout below.
It is important, for example, for a large medical center especially, to provide a phone number should an appointment change be needed, answered by staff prepared to warn patients of the consequences of delay.
This draft leaves space for such a number to be included and gives a stronger, much clearer warning!
/////////////////////////////////////////////
[To be given to EVERY Patient with EVERY Prolia injection]
DEAR PATIENT:
Please READ this CAREFULLY!
Ask your DOCTOR to explain anything you do not understand!
You have been prescribed a drug called PROLIA®.
This drug may help keep your bones strong.
Your Doctor can explain this to you.
PROLIA must be injected every six months.
Your next injection is scheduled for [date].
YOU MUST GET YOUR PROLIA SHOT
ON TIME!!!
EVEN A SHORT DELAY CAN RESULT IN PAINFUL BROKEN BONES!!!!
ON TIME!!!
EVEN A SHORT DELAY CAN RESULT IN PAINFUL BROKEN BONES!!!!
IF FOR ANY REASON YOU CANNOT KEEP YOUR APPOINTMENT FOR YOUR NEXT PROLIA SHOT ON [DATE], CALL (###) TO SET UP ANOTHER TIMELY APPOINTMENT.
IF YOU ARE PREVENTED BY ANYONE IN THIS OFFICE FROM SCHEDULING YOUR NEXT PROLIA SHOT ON TIME, CALL (###) ###-#### AS SOON AS POSSIBLE TO ARRANGE FOR A TIMELY PROLIA INJECTION.
IF YOU ARE PREVENTED BY ANYONE IN THIS OFFICE FROM SCHEDULING YOUR NEXT PROLIA SHOT ON TIME, CALL (###) ###-#### AS SOON AS POSSIBLE TO ARRANGE FOR A TIMELY PROLIA INJECTION.
///////////////////////////////////////////////////////////
Also, patient records and other files should be RED FLAGGED to alert ALL staff (including schedulers) that this patient is on Prolia and that their injections must not be delayed.
I specifically asked about this when I was told that the new doctor could not see me for months after my shot was due. I was told that I would have to wait until I saw her to get that shot. I assumed this was correct information. It wasn't. And it left me with severe pain and disability now nearly entering a third year.
So while patients would benefit from a properly worded reminder card, office staff WORKING UNDER THE DIRECTION OF THE MEDICAL PROFESSIONALS must be prepared to convey proper information, instructions and reminders as well!
Also, in the wake of many cases like mine that I am learning about, Amgen needs to take necessary steps too, beginning with using the five letter word word "DELAY" in its warnings to patients!
Medical professionals may understand that words like "discontinuation" and "stopping" are enough, but patients information definitely requires warnings using the word DELAY as well.
This is why -- even though I'm just one person, and in pretty bad shape even to be sitting up to do this -- I'm doing what I can to get the word out to as many people as I can reach. Because no one else seems to be doing it!
This blog is part of that effort!
Monday, September 3, 2018
HOW MUCH DID TV ADS COST? HOW MUCH WOULD WORDS OF WARNING COST?
Prime time TV now carries ads starring actress Blythe Danner along with other healthy looking women enjoying happy, active lives because they are on Prolia.
You can see these ads here: https://www.ispot.tv/brands/dHV/prolia
How much did these TV ads cost? How much would it have cost to add warnings about delay as well as warnings that once ON Prolia there is no protocol (according to Amgen representatives) for getting off?
You can see these ads here: https://www.ispot.tv/brands/dHV/prolia
How much did these TV ads cost? How much would it have cost to add warnings about delay as well as warnings that once ON Prolia there is no protocol (according to Amgen representatives) for getting off?
Monday, August 27, 2018
PROGRESS NOTE: DISCOURAGED, CONFUSED AND TRAPPED IN THE PROLIA GILL NET
Progress Note:
Over six months since my backbone disaster I was still exhausted and confused as so much of life slipped away. But the good news was that the latest tests ordered by Dr. B. showed that I was not clearing Prolia too fast and could therefore wait for the usual time for my next shot. (There seems to be no way to get an earlier shot through Medicare or even to find out just what the price is without insurance. Prices around $1200 show up on the internet but that’s a guess.) I've e-mailed Amgen's lawyer to ask about this.
So far no response. (Direct calls to Amgen for this information wound up in a wild goose chase of infinite phone loops.)
Do I need to switch to Reclast (yearly IV?). Or maybe some other drug? This has been suggested. Actually Prolia seemed to be stopping bone loss somewhat (despite the problems it has caused) and had I been warned about delay, and had the U. of C. personnel taken precautions during the change in doctors I might not be in this condition now. Just a few simple words could have avoided all of this! It's water over he dam now but this injury has already destroyed many months of my life, and much may be permanent. It makes me angry whenever I think of it.
Also, what's the downside of Reclast or the other drugs? What role do other drugs or conditions have in all of this? What supplements should I be taking? Many questions. Few answers. I'm now seeing a lot online about this on social media. No way to check out these stories but I think if I'd researched a lot more and trusted doctors a lot less I'd never have started Prolia!
August 27 I spoke with Amgen once again. I asked if they could instruct me on a protocol to get off of Prolia safely. The nurse (they seem to be all nurses who answer these phones but occasionally I reach a pharmacist) with whom I spoke said they have no such protocol, adding that osteoporosis is a chronic condition and I will need to be on this (or some) medication for the rest of my life!
I have spoken at other times with other nurses on the phone at Amgen asking the same question: Does Amgen know how to get off Prolia safely? They have no answer for this beyond "Ask your doctor."
And my doctor, Dr. B., has spoken with Amgen and they appear to have no useful advice for her either in this regard!
I feel like a fish caught in a gill net! How many other poor fish are caught this way in Amgen's Prolia gill net?
My internist asked a specialist colleague about this who confirmed that there is no "protocol" for getting off of Prolia.
Meantime I have spent the spring and summer mostly indoors, getting out for a walk however painful a few times a week. I do my exercises several times daily in bed and in the building pool a few times a week, and I march around the living room for about 20 minutes every most days with 3-5 lb. weights in my hands. I see my physical therapist downtown twice a week to check me out and update my exercise program.
All of this is exhausting. I have but a fraction of my former energy and the constant discomfort/pain is a drain. I drive my car to the top of the Outer Drive and back once a week to keep the battery in shape. That takes about half an hour. I've been at friends' homes a few times but never without discomfort morphing into pain (relieved only when I can lie down for a while to take the excruciating pressure off my back.)
Now at least I'm strong enough to do my own food prep I'm making and drinking at least a quart of raw veggie juice every day as well.
I have almost totally relinquished organizational activities. And I expect to spend the Rosh Hashanah and Yom Kippur holidays pretty much in bed. My social self has a hard time coping with this degree of isolation.
I'd like to get away to someplace warm at the end of winter but don't know if I can take on such an ambitious activity by then.
And all the while, as I am learning more and more, this drug may be doing me harm; yet I cannot find a way to escape it without disaster! Is there any way out of the Prolia gill net?
Over six months since my backbone disaster I was still exhausted and confused as so much of life slipped away. But the good news was that the latest tests ordered by Dr. B. showed that I was not clearing Prolia too fast and could therefore wait for the usual time for my next shot. (There seems to be no way to get an earlier shot through Medicare or even to find out just what the price is without insurance. Prices around $1200 show up on the internet but that’s a guess.) I've e-mailed Amgen's lawyer to ask about this.
So far no response. (Direct calls to Amgen for this information wound up in a wild goose chase of infinite phone loops.)
Do I need to switch to Reclast (yearly IV?). Or maybe some other drug? This has been suggested. Actually Prolia seemed to be stopping bone loss somewhat (despite the problems it has caused) and had I been warned about delay, and had the U. of C. personnel taken precautions during the change in doctors I might not be in this condition now. Just a few simple words could have avoided all of this! It's water over he dam now but this injury has already destroyed many months of my life, and much may be permanent. It makes me angry whenever I think of it.
Also, what's the downside of Reclast or the other drugs? What role do other drugs or conditions have in all of this? What supplements should I be taking? Many questions. Few answers. I'm now seeing a lot online about this on social media. No way to check out these stories but I think if I'd researched a lot more and trusted doctors a lot less I'd never have started Prolia!
August 27 I spoke with Amgen once again. I asked if they could instruct me on a protocol to get off of Prolia safely. The nurse (they seem to be all nurses who answer these phones but occasionally I reach a pharmacist) with whom I spoke said they have no such protocol, adding that osteoporosis is a chronic condition and I will need to be on this (or some) medication for the rest of my life!
I have spoken at other times with other nurses on the phone at Amgen asking the same question: Does Amgen know how to get off Prolia safely? They have no answer for this beyond "Ask your doctor."
And my doctor, Dr. B., has spoken with Amgen and they appear to have no useful advice for her either in this regard!
I feel like a fish caught in a gill net! How many other poor fish are caught this way in Amgen's Prolia gill net?
My internist asked a specialist colleague about this who confirmed that there is no "protocol" for getting off of Prolia.
Meantime I have spent the spring and summer mostly indoors, getting out for a walk however painful a few times a week. I do my exercises several times daily in bed and in the building pool a few times a week, and I march around the living room for about 20 minutes every most days with 3-5 lb. weights in my hands. I see my physical therapist downtown twice a week to check me out and update my exercise program.
All of this is exhausting. I have but a fraction of my former energy and the constant discomfort/pain is a drain. I drive my car to the top of the Outer Drive and back once a week to keep the battery in shape. That takes about half an hour. I've been at friends' homes a few times but never without discomfort morphing into pain (relieved only when I can lie down for a while to take the excruciating pressure off my back.)
Now at least I'm strong enough to do my own food prep I'm making and drinking at least a quart of raw veggie juice every day as well.
I have almost totally relinquished organizational activities. And I expect to spend the Rosh Hashanah and Yom Kippur holidays pretty much in bed. My social self has a hard time coping with this degree of isolation.
I'd like to get away to someplace warm at the end of winter but don't know if I can take on such an ambitious activity by then.
And all the while, as I am learning more and more, this drug may be doing me harm; yet I cannot find a way to escape it without disaster! Is there any way out of the Prolia gill net?
Tuesday, August 21, 2018
WHAT THREE GREAT POETS SAID TO ME
Alexander Pope (1688-1744), considered by many to be the foremost English poet of the early 18th century, had much to say on the condition of Man.
Now, as I deal with immobility and pain and the inability to live what for me was a normal life, these lines from Alexander Pope's Essay on Man (Epistle 2, part 2) keep flashing in my mind's eye like neon signs from Hell:
When I consider how my light is spent Ere half my days in this dark world and wide, And that one talent which is death to hide Lodg'd with me useless, though my soul more bent To serve therewith my Maker, and present My true account, lest he returning chide; "Doth God exact day-labour, light denied?" I fondly ask. But Patience to prevent That murmur, soon replies: "God doth not need Either man's work or his own gifts; who best Bear his mild yoke, they serve him best. His state Is kingly. Thousands at his bidding speed And post o'er land and ocean without rest: They also serve who only stand and wait." ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
3. A Psalm of Life by Henry Wadsworth Longfellow
 |
| Alexander Pope 1688-1744 |
Self-love, the spring of motion, acts the soul;
Reason's comparing balance rules the whole.
Man, but for that, no action could attend,
And but for this, were active to no end:
Fix'd like a plant on his peculiar spot,
To draw nutrition, propagate, and rot;
Or, meteor-like, flame lawless through the void,
Destroying others, by himself destroy'd.
For I do indeed feel like a plant fixed in one place, to "draw nutrition, propagate and rot."
(A link to the full text is posted below).
~~~~~~~~~~~~~~
Even earlier, however, John Milton (1608-1674) in "On His Blindness" had assured himself that despite his disability, his life still had purpose, and held that "they also serve who only stand and wait." (This text also posted below).
 |
| John Milton, 1608-1674 |
~~~~~~~~~~~~~~~~
But "standing and waiting" is not what I was designed for. My entire life has been about being "up and doing" as exemplified in the work of the American poet Henry Wadsworth Longfellow.
 |
| Henry Wadsworth Longfellow 1807-1882 |
This great poet, who immortalized Paul Revere's famous ride, and countless other real and mythic heroic figures of Amercan history, obviously had no patience for idlers, as we read in his "Psalm of Life." (Full text printed below.)
"Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait."
But what am I to make of the last line of the final stanza of his "Psalm of Life?" Learn to Labor and to Wait? Wait for what? And therein lies my dilemma!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here are some full texts for reference.
1. Alexander Pope's Essay on Man is too long to print here but you may find full text at:
2. On his Blindness by John Milton
A Psalm of Life
What The Heart Of The Young Man Said To The Psalmist.
Tell me not, in mournful numbers,
Life is but an empty dream!
For the soul is dead that slumbers,
And things are not what they seem.
Life is real! Life is earnest!
And the grave is not its goal;
Dust thou art, to dust returnest,
Was not spoken of the soul.
Not enjoyment, and not sorrow,
Is our destined end or way;
But to act, that each to-morrow
Find us farther than to-day.
Art is long, and Time is fleeting,
And our hearts, though stout and brave,
Still, like muffled drums, are beating
Funeral marches to the grave.
In the world’s broad field of battle,
In the bivouac of Life,
Be not like dumb, driven cattle!
Be a hero in the strife!
Trust no Future, howe’er pleasant!
Let the dead Past bury its dead!
Act,— act in the living Present!
Heart within, and God o’erhead!
Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time;
Footprints, that perhaps another,
Sailing o’er life’s solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.
Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday, August 20, 2018
A Limerick -- Because it Helps to Laugh when I'd Rather Cry!
My very helpful Physical Therapist Dr. Sanjoy Roy, who is helping me get my body back to some degree of pain free utility, said I needed to stretch my Quadratus Lumborum muscle. This muscle, known as the "Q.L.," is a large, trapezoidal, deep abdominal muscle. It is hard to find, but I'm working on it (along with a whole bunch of other exercises!)
And I'm writing about it too! Dr. Roy, this is dedicated to you!
A Roman who spoke at the Forum,
Said "I fear that my speeches may bore 'em!
People started to snore,
And one dropped to the floor,
And stretched out his Quadratus Lumborum!"
As I watch my active life disappear and spend my days working to restore what I can of my body, I need to laugh at something! So writing this gives me a chuckle!
And I'm writing about it too! Dr. Roy, this is dedicated to you!
A Roman who spoke at the Forum,
Said "I fear that my speeches may bore 'em!
People started to snore,
And one dropped to the floor,
And stretched out his Quadratus Lumborum!"
As I watch my active life disappear and spend my days working to restore what I can of my body, I need to laugh at something! So writing this gives me a chuckle!
Sunday, August 19, 2018
Joan Finds her Iliopsoas with a Little Help from a Friend
A dear friend who is an experienced naprapath thought I would benefit from stretching the iliopsoas muscle (actually a pair of muscles) that wanders around the hip and leg like an inebriated rattlesnake.
She showed me some stretches for the iliopsoas during the course of a dinner party at Ariane Glazer's house, and I think they will help ease some of the pain I am experiencing now.
So Jane Fresne, this is dedicated to you!
Anatomy studies are deep,
And students have schedules to keep.
They cried "Teacher, please show us,
The iliopsoas,
And then let us go home and sleep!"
Everyone should study anatomy, so here are some pictures to inspire you!
She showed me some stretches for the iliopsoas during the course of a dinner party at Ariane Glazer's house, and I think they will help ease some of the pain I am experiencing now.
So Jane Fresne, this is dedicated to you!
Anatomy studies are deep,
And students have schedules to keep.
They cried "Teacher, please show us,
The iliopsoas,
And then let us go home and sleep!"
Everyone should study anatomy, so here are some pictures to inspire you!
 |
| Rembrandt Does It |
 |
| Female Students do it |
 |
| A High School Biology Teacher Does It; with Spandex! |
Wednesday, August 8, 2018
A DOCTOR VISIT AND A LONELY EVENING
I'm feeling a little better and can stay upright a little longer.
Today began with a confusing visit to Doctor B.
This will be the last time I'll see her downtown. After this she'll only be at the Hyde Park U of C campus. But now I think I can get there -- albeit with difficulty -- where even a few weeks ago this would have been out of the question.
At last she took what I had to say about the thyroid supplement (levothyroxin) seriously. Before she had simply told me not to stop taking it. But today I explained the reasons why I have been taking it. (It's always on my record but no one ever asks me why). And she agreed I could cut back. That's good, because I've been reading more about this and how it interferes with calcium metabolism.
This is a much more complicated story actually, but this much will suffice here.
This evening was a wonderful evening at Carol D'Anca's home for our group that has helped with our Plant Based Nutrition for Life Meetup that is now shutting down. (More about that elsewhere - but we did what was needed and now it was time to say goodbye!)
I was so glad I could be there and I made it through a long and happy evening without pain. I'm sure the Tylenol #3 I took had something to do with it, but I'm sure the endorphins produced during a happy evening with friends had such to do with this as well!
Being able to drive to an evening out and enjoy it all was a huge step my road to recovery even though I was exhausted the next day!
Postscript: I had another lovely evening August 27 at my friend Ariane's home. I managed without drugs this time mostly because I brought along my exercise mat and lay on the floor while we chatted after dinner. Again, I was exhausted the following day but it was so worth it!
Today began with a confusing visit to Doctor B.
This will be the last time I'll see her downtown. After this she'll only be at the Hyde Park U of C campus. But now I think I can get there -- albeit with difficulty -- where even a few weeks ago this would have been out of the question.
At last she took what I had to say about the thyroid supplement (levothyroxin) seriously. Before she had simply told me not to stop taking it. But today I explained the reasons why I have been taking it. (It's always on my record but no one ever asks me why). And she agreed I could cut back. That's good, because I've been reading more about this and how it interferes with calcium metabolism.
This is a much more complicated story actually, but this much will suffice here.
This evening was a wonderful evening at Carol D'Anca's home for our group that has helped with our Plant Based Nutrition for Life Meetup that is now shutting down. (More about that elsewhere - but we did what was needed and now it was time to say goodbye!)
I was so glad I could be there and I made it through a long and happy evening without pain. I'm sure the Tylenol #3 I took had something to do with it, but I'm sure the endorphins produced during a happy evening with friends had such to do with this as well!
Being able to drive to an evening out and enjoy it all was a huge step my road to recovery even though I was exhausted the next day!
Postscript: I had another lovely evening August 27 at my friend Ariane's home. I managed without drugs this time mostly because I brought along my exercise mat and lay on the floor while we chatted after dinner. Again, I was exhausted the following day but it was so worth it!